Journal articles
Salazar Rivera J, Alsaadi N, Parra-Esquivel EI, Morris C, Boyle C (2023). A Scoping Review of Interventions Delivered by Occupational Therapists in School Settings. Journal of Occupational Therapy, Schools, & Early Intervention, 1-25.
Morrow EM, Morris C, Theologis T, Frost J (2023). Allied health professionals' views on important outcomes of children's elective lower limb orthopaedic surgery: a qualitative interview study to inform a core outcome set.
Disabil Rehabil, 1-9.
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Allied health professionals' views on important outcomes of children's elective lower limb orthopaedic surgery: a qualitative interview study to inform a core outcome set.
PURPOSE: a common methodological limitation of research that guides surgical procedure selection for children's elective lower limb orthopaedic surgeries is inconsistent outcome selection. Improving outcome consistency can be achieved through the development of a core outcome set (COS). The aim of this study is to identify which outcomes are considered important for children's elective lower limb orthopaedic surgeries by allied health professionals (AHPs) and explore why they select these outcomes, to inform a COS development project. METHODS: Online semi-structured interviews were conducted with relevant AHPs. Participants were selected using maximum variation purposive sampling; selection was based on profession and inpatient/outpatient role. The data set was analysed using an inductive and deductive approach to thematic analysis. RESULTS: Four physiotherapists, three orthotists, three prosthetists, and two occupational therapists were interviewed. Most identified outcomes of importance related to "activities and participation". From the data, we conceptualised that AHPs with effective multidisciplinary communication focused on child-centred outcomes, while clinicians with limited multidisciplinary teamwork focused on role-based outcomes. CONCLUSIONS: There is concurrence between outcomes identified as important in this study, and other qualitative studies in similar populations. These important outcomes were seldom measured in previous studies or in routine clinical practice.Implications for rehabilitationAllied health professionals (AHPs) prioritise activity and participation outcomes after children's elective lower limb orthopaedic surgery.It is important to the rehabilitation of children after elective lower limb orthopaedic surgery that all involved AHPs collaborate with the wider multidisciplinary team.Multidisciplinary team communication encourages collaborative outcome identification, and discourages role defined outcome focus.
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Al-Najjar N, Bray L, Carter B, Castle AP, Collingwood A, Cook G, Crudgington H, Currier J, Dietz KC, Hardy WAS, et al (2023). Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.
BMJ Open,
13(3).
Abstract:
Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.
INTRODUCTION: Sleep and epilepsy have an established bidirectional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but was delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical and cost-effectiveness in children with Rolandic epilepsy between standard care (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components. METHODS AND ANALYSES: CASTLE Sleep-E is a UK-based, multicentre, open-label, active concurrent control, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in outpatient clinics and allocated 1:1 to SC or SC augmented with COSI (SC+COSI). Primary clinical outcome is parent-reported sleep problem score (Children's Sleep Habits Questionnaire). Primary health economic outcome is the incremental cost-effectiveness ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D Instrument). Parents and children (≥7 years) can opt into qualitative interviews and activities to share their experiences and perceptions of trial participation and managing sleep with Rolandic epilepsy. ETHICS AND DISSEMINATION: the CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands (HRA)-Nottingham 1 Research Ethics Committee (reference: 21/EM/0205). Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners and policymakers. Pseudo-anonymised individual patient data will be made available after dissemination on reasonable request. TRIAL REGISTRATION NUMBER: ISRCTN13202325.
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Garrood A, Bjornstad G, Borek A, Gillett A, Lloyd J, Brand S, Tarrant M, Ball S, Hawton A, McDonald A, et al (2023). Healthy Parent Carers: Acceptability and practicability of online delivery and learning through implementation by delivery partner organisations.
Health Expect,
26(5), 2050-2063.
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Healthy Parent Carers: Acceptability and practicability of online delivery and learning through implementation by delivery partner organisations.
BACKGROUND: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer-led group-based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID-19. METHODS: the study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. RESULTS: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co-created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll-out of the programme with other delivery partner organisations. CONCLUSIONS: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. PATIENT AND PUBLIC CONTRIBUTION: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.
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Merrick H, Driver H, Main C, Kenny RPW, Richmond C, Allard A, Bola K, Morris C, Parr JR, Pearson F, et al (2023). Impacts of health care service changes implemented due to COVID-19 on children and young people with long-term disability: a mapping review.
Dev Med Child Neurol,
65(7), 885-899.
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Impacts of health care service changes implemented due to COVID-19 on children and young people with long-term disability: a mapping review.
AIM: to identify the research on childhood disability service adaptations and their impact on children and young people with long-term disability during the COVID-19 pandemic. METHOD: a mapping review was undertaken. We searched the World Health Organization Global COVID-19 database using the search terms 'children', 'chronic/disabling conditions', and 'services/therapies'. Eligible papers reported service changes for children (0-19 years) with long-term disability in any geographical or clinical setting between 1st January 2020 and 26th January 2022. Papers were charted across the effective practice and organization of care taxonomy of health system interventions and were narratively synthesized; an interactive map was produced. RESULTS: Reduction of face-to-face care and usual provision had a huge impact on children and families. Adoption of telehealth provided continuity for the care and management of some conditions. There was limited evidence of changes to mental health services, transitions of care, social care, or child-reported satisfaction or acceptability of service changes. INTERPRETATION: the long-term impacts of service change during the pandemic need full evaluation. However, widespread disruption seems to have had a profound impact on child and carer health and well-being. Service recovery needs to be specific to the individual needs of children with a disability and their families. This should be done through coproduction to ensure that service changes meet needs and are accessible and equitable.
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Firouzeh P, Morris C, Sonnenberg LK, Manns P, Pritchard L (2023). Parent experience with ankle-foot orthoses for their young children with cerebral palsy: a qualitative study.
Disabil Rehabil, 1-8.
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Parent experience with ankle-foot orthoses for their young children with cerebral palsy: a qualitative study.
PURPOSE: This study explored the experiences of parents of young children with cerebral palsy who used Ankle-Foot Orthoses (AFOs). MATERIALS AND METHODS: Parents of children with cerebral palsy (n = 11; age range 2-6 years) who used solid or hinged AFOs participated. Interpretive Description, a qualitative methodological approach focused on the application of findings to clinical practice, was used. Semi-structured interviews were conducted, and themes were developed using thematic analysis. RESULTS: Four themes described parent experience with their children's AFOs: 1) "Hear what I am saying": Collaborative decision-making with families, 2) "Is my child going to be excluded because of AFOs?": Parent and child adjustment was a journey, 3) AFOs created financial and practical challenges, 4) the perceived benefits of AFO use. CONCLUSIONS: Adjusting to AFOs was a challenging and time-consuming process for parents and children, which may have resulted in lower frequency and duration of use than anticipated by clinicians. Clinicians must be aware of the physical and psychosocial adjustment process as children and families adapt over time and work with families to ensure AFO use is optimized and individualized.
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Carter B, Bray L, al-Najjar N, Piella AT, Tudur-Smith C, Spowart C, Collingwood A, Crudgington H, Currier J, Hughes DA, et al (2023). The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial.
Trials,
24(1).
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The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial
Abstract
. Background
. In paediatric epilepsy, the evidence of effectiveness of antiseizure treatment is inconclusive for some types of epilepsy. As with other paediatric clinical trials, researchers undertaking paediatric epilepsy clinical trials face a range of challenges that may compromise external validity
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. Main body
. In this paper, we critically reflect upon the factors which impacted recruitment to the pilot phase of a phase IV unblinded, randomised controlled 3×2 factorial trial examining the effectiveness of two antiseizure medications (ASMs) and a sleep behaviour intervention in children with Rolandic epilepsy. We consider the processes established to support recruitment, public and patient involvement and engagement (PPIE), site induction, our oversight of recruitment targets and figures, and the actions we took to help us understand why we failed to recruit sufficient children to continue to the substantive trial phase.
. The key lessons learned were about parent preference, children’s involvement and collaboration in decision-making, potential and alternative trial designs, and elicitation of stated preferences pre-trial design.
. Despite pre-funding PPIE during the trial design phase, we failed to anticipate the scale of parental treatment preference for or against antiseizure medication (ASMs) and consequent unwillingness to be randomised. Future studies should ensure more detailed and in-depth consultation to ascertain parent and/or patient preferences. More intense engagement with parents and children exploring their ideas about treatment preferences could, perhaps, have helped predict some recruitment issues. Infrequent seizures or screening children close to natural remission were possible explanations for non-consent. It is possible some clinicians were unintentionally unable to convey clinical equipoise influencing parental decision against participation. We wanted children to be involved in decisions about trial participation. However, despite having tailored written and video information to explain the trial to children we do not know whether these materials were viewed in each consent conversation or how much input children had towards parents’ decisions to participate. Novel methods such as parent/patient preference trials and/or discrete choice experiments may be the way forward.
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. Conclusion
. The importance of diligent consultation, the consideration of novel methods such as parent/patient preference trials and/or discrete choice experiments in studies examining the effectiveness of ASMs versus no-ASMs cannot be overemphasised even in the presence of widespread clinician equipoise.
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Taylor H, Pennington L, Morris C, Craig D, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D, et al (2022). Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops.
BMJ Paediatrics Open,
6(1), e001425-e001425.
Abstract:
Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops
BackgroundYoung children with neurodisability commonly experience eating, drinking and swallowing difficulties (EDSD). Little is documented about which interventions and outcomes are most appropriate for such children. We aimed to seek consensus between parents of children with neurodisability and health professionals on the appropriate interventions and outcomes to inform future clinical developments and research studies.MethodsTwo populations were sampled: parents of children aged up to 12 years with neurodisability who experienced EDSD; health professionals working with children and young people (aged 0–18 years) with neurodisability with experience of EDSD. Participants had taken part in a previous national survey and were invited to take part in a Delphi survey and/or consultation workshops. Two rounds of this Delphi survey sought agreement on the appropriate interventions and outcomes for use with children with neurodisability and EDSD. Two stakeholder consultation workshops were iterative, with the findings of the first discussed at the second, and conclusions reached.ResultsA total of 105 parents and 105 health professionals took part. Parents and health professionals viewed 19 interventions and 10 outcomes as essential. Interventions related to improvement in the physical aspects of a child’s EDSD, behavioural changes of the child or parent, and changes in the child or family’s well-being. Both parents and health professionals supported a ‘toolkit’ of interventions that they could use together in shared decision making to prioritise and implement timely interventions appropriate to the child.ConclusionsThis study identified interventions viewed as essential to consider for improving EDSD in children with neurodisability. It also identified several key outcomes that are valued by parents and health professionals. The Focus on Early Eating, Drinking and Swallowing (FEEDS) Toolkit of interventions to improve EDSD in children with neurodisability has been developed and now requires evaluation regarding its use and effectiveness.
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Rapson R, King T, Morris C, Jeffery R, Mellhuish J, Stephens C, Marsden J (2022). Effect of different durations of using a standing frame on the rate of hip migration in children with moderate to severe cerebral palsy: a feasibility study for a randomised controlled trial. Physiotherapy, 116, 42-49.
Nguyen L, van Oort B, Davis H, van der Meulen E, Dawe-McCord C, Franklin A, Gorter JW, Morris C, Ketelaar M (2022). Exploring the “how” in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom.
Research Involvement and Engagement,
8(1).
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Exploring the “how” in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom
AbstractBackgroundInvolvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The purpose of this paper is to describe and reflect on different approaches between researchers and young partners by experience based on six research projects conducted in Canada, Netherlands, and United Kingdom.MethodsFrom six exemplar research projects, at least one researcher and one young partner by experience were asked to collaboratively (1) describe the project; (2) summarise the values and practicalities of the project; and (3) reflect on their partnership. Thematic analysis was applied to the findings from these reflective exercises, which included meeting summaries, recordings, and notes.ResultsAll projects shared similar values, including mutual respect between all team members. Young partners were offered a variety of opportunities and approaches to being involved, for example in recruiting participants, co-analysing or (co-)presenting results. Supports were provided to the teams in a variety of ways, including organizing accessible meetings and having dedicated facilitators. Regular and proactive communication was encouraged by using asynchronous modes of communication, establishing reference documents, and a personal approach by facilitators. Facilitators aimed to tailor the needs of all team members by continuously discussing their preferred roles in the project. While most projects did not offer formal research training, various learning and skill development opportunities were provided throughout, including presenting skills or advocacy training.ConclusionWith this paper, we demonstrated the value of reflection, and we invite others to reflect on their partnerships and share their lessons learned. Our recommendations for involvement of young people in research are: (1) Remember that it is okay to not know what the partnership might look like and there is no single recipe of how to partner; (2) Take the time to invest in partnerships; (3) Provide ongoing opportunities to reflect on partnerships; (4) Consider how to balance the power dynamics; and (5) Consider how to incorporate diversity in the background of young partners in research.
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Sellers D, Pennington L, Bryant E, Benfer K, Weir K, Aboagye S, Morris C (2022). Mini‐EDACS: Development of the Eating and Drinking Ability Classification System for young children with cerebral palsy.
Developmental Medicine & Child Neurology,
64(7), 897-906.
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Mini‐EDACS: Development of the Eating and Drinking Ability Classification System for young children with cerebral palsy
AbstractAimTo develop and test Mini‐EDACS to describe developing eating and drinking abilities of children with cerebral palsy (CP) aged between 18 and 36 months.MethodThe existing Eating and Drinking Ability Classification System (EDACS) was modified to define Mini‐EDACS content. Mini‐EDACS was developed in three stages: (1) EDACS was modified after application to videos of standardized feeding evaluations of children with CP aged 18 to 36 months (n = 130); (2) refined content and validity of Mini‐EDACS was established through an international Delphi survey; (3) interobserver reliability was assessed by comparing Mini‐EDACS levels assigned by speech and language therapists (SaLTs) from video data and parent report.ResultsMini‐EDACS provides age‐appropriate descriptions for children aged 18 to 36 months with CP. Eighty‐nine stakeholders participated in the Delphi survey; required levels of agreement were met after one round (i.e. >80% agreement). Thirteen SaLTs completed paired ratings from 43 video recordings: absolute agreement was 58% (kappa 0.43; intraclass correlation coefficient 0.78; 95% confidence interval 0.63–0.87).InterpretationMini‐EDACS provides a valid system for classifying eating and drinking performance of children with CP under 3 years old. Results suggest moderate agreement and good reliability when rating Mini‐EDACS levels from video recordings of young children with CP.
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Taylor H, Pennington L, Craig D, Morris C, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, Garland D, et al (2021). Children with neurodisability and feeding difficulties: a UK survey of parent-delivered interventions.
BMJ Paediatrics Open,
5(1).
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Children with neurodisability and feeding difficulties: a UK survey of parent-delivered interventions
Background Eating, drinking and swallowing difficulties (EDSD) are common in children with neurodisability, and have physical and non-physical causes. EDSD have substantial impacts on the child and family. Little is currently documented about what advice is usually given by professionals, including the interventions commonly used, and what informally constitutes â € best clinical practice'. We aimed to identify current UK practice of parent-delivered interventions for EDSD for children with neurodisability, and the outcomes valued by professionals and parents. Methods Two populations were sampled: health professionals working with children and young people (aged 0-18 years) with neurodisability who experience EDSD (n=421); parents of children with neurodisability aged up to 12 years who experience EDSD (n=359). Questionnaires were developed based on the findings from updates of three systematic reviews, a mapping review of interventions used with this population, and in consultation with health professionals and parents. The questionnaires were distributed through UK health professional and parent networks and mainstream and specialist schools. Results Diverse professional groups, including speech and language therapists, occupational therapists, paediatricians and dietitians, support children with EDSD and neurodisability. A range of parent-delivered interventions, such as food and drink modification, positioning and modification of mealtime environment, were recommended by health professionals and are used by and acceptable to parents. Health professionals thought the interventions were effective but parents' views were less consistent. Both health professionals and parents rated better general health and improved nutrition as the most important outcomes. Conclusions These survey findings outline current UK practice of parent-delivered interventions for EDSD in young children with neurodisability. The survey suggests key outcomes to measure in assessing the effectiveness of interventions. Further research is now needed to fully evaluate the effectiveness of interventions and move towards an evidence-based approach to best practice.
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Pease A, Goodenough T, Borwick C, Watanabe R, Morris C, Williams C (2021). Development of a core outcome set for evaluative research into paediatric cerebral visual impairment (CVI), in the UK and Eire.
BMJ Open,
11(9), e051014-e051014.
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Development of a core outcome set for evaluative research into paediatric cerebral visual impairment (CVI), in the UK and Eire
ObjectivesCerebral visual impairment (CVI) comprises a heterogeneous group of brain-related vision problems. A core outcome set (COS) represents the most important condition-specific outcomes according to patients, carers, professionals and researchers. We aimed to produce a COS for studies evaluating interventions for children with CVI, to increase the relevance of research for families and professionals and thereby to improve outcomes for affected children.DesignWe used methods recommended by the Core Outcome Measures in Effectiveness Trials Initiative. These included a proportionate literature review of outcomes used in previous studies; qualitative interviews with children and families; a two-round Delphi survey involving parents, children and professionals and a consensus meeting to ratify the most important outcomes.SettingTelephone interviews and online Delphi surveys of participants who all lived in UK or Eire.ParticipantsEighteen parents and six young people were interviewed. Delphi participants (n=80 did both rounds) included professionals working with children who have CVI (teachers, orthoptists, ophthalmologists, optometrists, qualified teachers for visually impaired, family members (parents and siblings) and affected children.ResultsThe literature review included 13 studies yielding 37 outcomes. Qualitative interviews provided 22 outcomes. After combining and refining similar items, the first round contained 23 outcomes and the second 46. At the consensus meeting, 5 attendees recommended 27 outcomes for inclusion in the CVI COS, of which 15 were ratified as most important, including 4 related to vision; 1 to family well-being; 1 to adults around the child being informed about CVI and the rest to the child’s abilities to engage with people and surroundings.ConclusionsGood engagement from participants led to the development of a COS. Future research will be useful to identify the best ways to measure COS items and potentially to update this COS as more interventions for CVI are developed.Trial registration numberISRCTN13762177.
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Farr WJ, Green D, Bremner S, Male I, Gage H, Bailey S, Speller S, Colville V, Jackson M, Memon A, et al (2021). Feasibility of a randomised controlled trial to evaluate home-based virtual reality therapy in children with cerebral palsy.
Disabil Rehabil,
43(1), 85-97.
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Feasibility of a randomised controlled trial to evaluate home-based virtual reality therapy in children with cerebral palsy.
PURPOSE: Evidence is increasing for effective virtual reality therapy for motor rehabilitation for children with Cerebral Palsy. We assessed the feasibility of a virtual reality therapy mode of intervention, appropriateness of measures, and potential cost-effectiveness. METHODS: a 12-week, 2-group, parallel-feasibility trial (ISRCT 17624388) using Nintendo Wii FitTM at home. Children aged 5-16, with ambulatory Cerebral Palsy, who were able to follow simple instructions were randomised to two groups; one supported by physiotherapists (individualised activity programme), the other unsupported with children having free choice (control). Children were assessed in clinic at baseline, week 6, and week 12 by blinded assessors. Feasibility of the intervention was assessed via recruitment, adherence, and usefulness of measurement tools. RESULTS: Forty-four children were eligible (out of 48 approached): 31 consented, 30 were randomised, 21 completed the study; 10 in the supported group and 11 in the unsupported group. Nine children discontinued from tiredness, after-school activities, homework, surgery, technical difficulties or negative system feedback. The supported group completed 19 of 36 (IQR 5-35) possible sessions; the unsupported group 24 of 36 sessions (IQR 8-36). Gross Motor Function Measure scores varied by Cerebral Palsy severity after the intervention. There were no adverse events. CONCLUSION: Virtual reality therapy offers potential as a therapeutic adjunct for children with Cerebral Palsy, warranting substantive confirmatory study. Gross Motor Function Measure, with modifications to improve sensitivity, appeared appropriate as a primary measure, with Timed up and Go test secondary. The intervention was inexpensive costing £20 per child. An explanatory trial to evaluate the clinical/cost-effectiveness of commercial system virtual reality therapy is feasible with minor methodological adaptation. Implications for rehabilitation Home-based interactive computer gaming was feasible, safe and cost effective as a therapy adjunct. Discontinue if additional pressures are present: imminent surgery, family resilience to technical difficulties, negative system feedback, after-school activities. Change in Gross Motor Function Measurement scores varied by severity of Cerebral Palsy.
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Lloyd J, Bjornstad G, Borek A, Cuffe-Fuller B, Fredlund M, McDonald A, Tarrant M, Berry V, Wilkinson K, Mitchell S, et al (2021). Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention.
BMJ Open,
11(8).
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Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention.
OBJECTIVES: Parent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the 'Healthy Parent Carers' (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement. INTERVENTION, SETTING AND PARTICIPANTS: HPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male). DESIGN: a preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial. RESULTS: HPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants' expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery. CONCLUSION: HPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme. TRIAL REGISTRATION NUMBER: ISRCTN151144652.
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Wilkinson K, Gumm R, Hambly H, Logan S, Morris C (2021). Implementation of training to improve communication with disabled children on the ward: a feasibility study.
Health Expectations,
24(4), 1433-1442.
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Implementation of training to improve communication with disabled children on the ward: a feasibility study
AbstractBackgroundParents of disabled children report poorer inpatient experiences when they stay in hospital, and some staff report finding communicating with disabled children challenging. This study tested the feasibility of implementing a training package for staff on paediatric wards to improve communication with disabled children, especially those with communication difficulties, and their families. The package was developed with parent carers and clinicians, and comprises a manual, a video of parent carers talking about real experiences, discussion points and local resources. The 50‐minutes training is intended for in‐house delivery by local facilitators.MethodsThirteen training sessions were delivered in paediatric wards across four hospitals in England, totalling 123 staff who took part. Participants completed questionnaires before (n = 109) and after (n = 36) training, and a sample of champions (senior clinicians) and facilitators were interviewed at the end of the study.ResultsFacilitators found the training easy to deliver, and participants felt they took away important messages to improve their practice. After the training, further changes were reported at an organizational level, including offering further training and reviewing practices.ConclusionsThis study provides supporting evidence for the implementation of a low‐cost, minimal‐resource training package to support staff communication with children and their families in hospitals. It provides promising indication of impact on behavioural change at the individual and organizational level.Patient and public contributionParent carers identified the need and helped to develop the training, including featuring in the training video. They were also consulted throughout the study on research design, delivery and reporting.
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Eke H, Hunt H, Ball S, Rogers M, Whear R, Allinson A, Melluish J, Lindsay C, Richardson D, Rogers J, et al (2021). Improving continence in children and young people with neurodisability: a systematic review and survey.
Health Technol Assess,
25(73), 1-258.
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Improving continence in children and young people with neurodisability: a systematic review and survey.
BACKGROUND: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. OBJECTIVE: the objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. DESIGN: a systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. RESULTS: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. LIMITATIONS: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. CONCLUSIONS: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. FUTURE WORK: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018100572. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.
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Manikam L, Allaham S, Zakieh O, Bou Karim Y, Demel I, Ali S, Wilson E, Oulton K, Morris C, Tann C, et al (2021). Online community engagement in response to COVID‐19 pandemic. Health Expectations, 24(2), 728-730.
Bull KS, Stubley S, Freeman A, Liossi C, Darlington AE, Grootenhuis MA, Hargrave D, Morris C, Walker DA, Kennedy CR, et al (2021). P06.03 Child, parent, and clinician selection of patient-reported outcome measures to use in pediatric neuro-oncology outpatient follow-up clinics. Neuro-Oncology, 23(Supplement_2), ii24-ii24.
Parr J, Pennington L, Taylor H, Craig D, Morris C, McConachie H, Cadwgan J, Sellers D, Andrew M, Smith J, et al (2021). Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study.
Health Technol Assess,
25(22), 1-208.
Abstract:
Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study.
BACKGROUND: Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child's nutrition, growth and general physical health. OBJECTIVE: to examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials. DESIGN: This was a mixed-methods study that included focus groups, surveys, an update of published systematic reviews of interventions, a systematic review of measurement properties of existing tools, evidence mapping, evidence synthesis, a Delphi survey and stakeholder workshops. SETTING: the study was carried out in NHS hospitals, community services, family homes and schools. PARTICIPANTS: Parents of children who had neurodisability and eating, drinking and swallowing difficulties. Professionals from health and education. Young people with eating, drinking and swallowing difficulties or young people who had previously experienced eating, drinking and swallowing difficulties. DATA SOURCES: Literature reviews; national surveys of parents and professionals; focus groups with parents, young people and professionals; and stakeholder consultation workshops. REVIEW METHODS: an update of published systematic reviews of interventions (searched July-August 2017), a mapping review (searched October 2017) and a systematic review of measurement properties using COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) methodology (searched May 2018). RESULTS: Significant limitations of the available research evidence regarding interventions and tools to measure outcomes were identified. A total of 947 people participated: 400 parents, 475 health professionals, 62 education professionals and 10 young people. The survey showed the wide range of interventions recommended by NHS health professionals, with parents and professionals reporting variability in the provision of these interventions. Parents and professionals considered 19 interventions as relevant because they modified eating, drinking and swallowing difficulties. Parents and professionals considered 10 outcomes as important to measure (including Nutrition, Growth and Health/safety); young people agreed that these were important outcomes. Stakeholder consultation workshops identified that project conclusions and recommendations made sense, were meaningful and were valued by parents and professionals. Parents and health professionals were positive about a proposed Focus on Early Eating, Drinking and Swallowing (FEEDS) toolkit of interventions that, through shared decision-making, could be recommended by health professionals and delivered by families. LIMITATIONS: the national surveys included large numbers of parents and professionals but, as expected, these were not representative of the UK population of parents of children with eating, drinking and swallowing difficulties. Owing to the limitations of research evidence, pragmatic decisions were made about interventions that might be included in future research and outcomes that might be measured. For instance, the reviews of research found only weak or poor evidence to support the effectiveness of interventions. The review of outcome measures found only limited low-level evidence about their psychometric properties. CONCLUSIONS: Opportunities and challenges for conducting clinical trials of the effectiveness of the FEEDS toolkit of interventions are described. Parents and professionals thought that implementation of the toolkit as part of usual NHS practice was appropriate. However, this would first require the toolkit to be operationalised through development as a complex intervention, taking account of constituent interventions, delivery strategies, implementation and manualisation. Subsequently, an evaluation of its clinical effectiveness and cost-effectiveness could be undertaken using appropriate research methods. FUTURE WORK: Initial steps include FEEDS toolkit development and evaluation of its use in clinical practice, and identification of the most robust methods to measure valued outcomes, such as Nutrition and Growth. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10454425. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 22. See the NIHR Journals Library website for further project information.
Abstract.
Author URL.
Katchburian LR, Oulton K, Main E, Morris C, Carr LJ (2021). Protocol for the Toxin Study: Understanding clinical and patient reported response of children and young people with cerebral palsy to intramuscular lower limb Botulinum neurotoxin-A injections, exploring all domains of the ICF. A pragmatic longitudinal observational study using a prospective one-group repeated measures design.
BMJ Open,
11(4), e049542-e049542.
Abstract:
Protocol for the Toxin Study: Understanding clinical and patient reported response of children and young people with cerebral palsy to intramuscular lower limb Botulinum neurotoxin-A injections, exploring all domains of the ICF. A pragmatic longitudinal observational study using a prospective one-group repeated measures design
IntroductionBotulinum neurotoxin-A (BoNT-A) is an accepted treatment modality for the management of hypertonia in children and young people with cerebral palsy (CYPwCP). Nevertheless, there are concerns about the long-term effects of BoNT-A, with a lack of consensus regarding the most meaningful outcome measures to guide its use. Most evidence to date is based on short-term outcomes, related to changes at impairment level (restrictions of body functions and structures), rather than changes in adaptive skills (enabling both activity and participation). The proposed study aims to evaluate clinical and patient reported outcomes in ambulant CYPwCP receiving lower limb BoNT-A injections over a 12-month period within all domains of the WHO’s International Classification of Functioning, Disability and Health and health-related quality of life (HRQoL).Methods and analysisThis pragmatic prospective longitudinal observational study will use a one-group repeated measures design. Sixty CYPwCP, classified as Gross Motor Function Classification System (GMFCS) levels I–III, aged between 4 and 18 years, will be recruited from an established movement disorder service in London, UK. Standardised clinical and patient reported outcome measures within all ICF domains; body structures and function, activity (including quality of movement), goal attainment, participation and HRQoL, will be collected preinjection and at 6 weeks, 6 months and up to 12 months postinjection. A representative subgroup of children and carers will participate in a qualitative component of the study, exploring how their experience of BoNT-A treatment relates to clinical outcome measures.Ethics and disseminationCentral London Research Ethics Committee has granted ethics approval (#IRAS 211617 #REC 17/LO/0579). Findings will be disseminated in peer-reviewed publications, conferences and via networks to participants and relevant stakeholders using a variety of accessible formats including social media.
Abstract.
Heys M, Lakhanpaul M, Allaham S, Manikam L, Owugha J, Oulton K, Morris C, Martin KR, Tann C, Martin J, et al (2020). Community-based family and carer-support programmes for children with disabilities.
Paediatrics and Child Health (United Kingdom),
30(5), 180-185.
Abstract:
Community-based family and carer-support programmes for children with disabilities
Children and young people (CYP) with disabilities face multiple challenges and unmet health needs. There is considerable variability in quality of health services across the UK for these children. Families report that they experience lack of information or misinformation about health, social care and education of their child. They also highlight a desire to engage with other families of CYP with disabilities. There is growing evidence that community-based group interventions in under-resourced settings are effective at improving quality of life for both CYP with disabilities and caregivers. Few similar interventions or evidence exists in the UK. This article provides an overview of relevant evidence and, using cerebral palsy as an exemplar, discusses the potential for group-based programmes for parent carers in the UK. Groups would aim to address information needs, support providers to deliver evidence-based care, and thereby improve the health and wellbeing of CYP with disabilities.
Abstract.
Crudgington H, Rogers M, Morris H, Gringras P, Pal DK, Morris C (2020). Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: a systematic review of measurement properties.
Epilepsia,
61(2), 230-248.
Abstract:
Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: a systematic review of measurement properties.
OBJECTIVE: to identify and appraise published evidence of the measurement properties for epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL). METHODS: We searched multiple databases for studies evaluating the measurement properties of English-language epilepsy-specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria. RESULTS: We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test-retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent-reported and evaluated more than other PROMs; QoLCE-55 has good and replicated evidence for structural and construct validity and internal consistency. Health-Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent-reported versions and good evidence of content, structural, and construct validity. SIGNIFICANCE: This review identified two leading candidate epilepsy-specific PROMs for measuring health-related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.
Abstract.
Author URL.
Crudgington H, Collingwood A, Bray L, Lyle S, Martin R, Gringras P, Pal DK, Morris C (2020). Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy & Behavior, 112, 107372-107372.
Liabo K, Boddy K, Bortoli S, Irvine J, Boult H, Fredlund M, Joseph N, Bjornstad G, Morris C (2020). Public involvement in health research: what does ‘good’ look like in practice?.
Research Involvement and Engagement,
6(1).
Abstract:
Public involvement in health research: what does ‘good’ look like in practice?
. Plain English summary
. Background
. Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.
. Aim
. This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.
. What we did and how we did it
. We wanted to establish what the literature defines as ‘good’ public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.
. Findings
. Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of ‘good’ involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.
.
. Abstract
. Background
. Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.
. Objective
. We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.
. Methods
. A structured review identified research-based principles for ‘good’ public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.
. Results
. We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five ‘values’ and seven ‘practice principles’ for ‘good’ involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.
. Conclusions
. Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what ‘good’ means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.
.
Abstract.
Stubley S, Freeman A, Liossi C, Darlington A-S, Grootenhuis M, Hargrave D, Morris C, Walker D, Kennedy C, Bull K, et al (2020). QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR a BRAIN TUMOUR. Neuro-Oncology, 22(Suppl 3), iii437-iii437.
Bull K, Stubley S, Kouzoupi N, Darlington A-S, Grootenhuis M, Hargrave D, Liossi C, Morris C, Walker D, Kennedy C, et al (2020). QOL-33. THE PROMOTE STUDY: DEVELOPMENT AND TESTING OF KLIK-UK, AN ONLINE PLATFORM, TO ENHANCE OUTPATIENT COMMUNICATION ABOUT HEALTH-RELATED QUALITY OF LIFE (HRQOL) AT THREE UK CHILDREN’S BRAIN TUMOUR TREATMENT CENTRES (CBTTCs). Neuro-Oncology, 22(Suppl 3), iii437-iii437.
Morris C, Blake S, Stimson A, Borek A, Maguire K (2020). Resources for parents raising a disabled child in the UK. Paediatrics and Child Health (United Kingdom), 30(8), 303-305.
Bull KS, Hornsey S, Kennedy CR, Darlington ASE, Grootenhuis MA, Hargrave D, Liossi C, Shepherd JP, Walker DA, Morris C, et al (2020). Systematic review: Measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury.
Neuro-Oncology Practice,
7(3), 277-287.
Abstract:
Systematic review: Measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury
Background: Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions about the most suitable PROM for use in clinical practice. Methods: We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the consensus-based standards for the selection of health status measurement instruments checklist. Results: Eight papers reported measurement properties of 4 questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency, whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change. Conclusions: Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.
Abstract.
Firouzeh P, Sonnenberg LK, Morris C, Pritchard-Wiart L (2019). Ankle foot orthoses for young children with cerebral palsy: a scoping review. Disability and Rehabilitation, 43(5), 726-738.
Crudgington H, Rogers M, Bray L, Carter B, Currier J, Dunkley C, Gibbon FM, Hughes D, Lyle S, Roberts D, et al (2019). Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.
Epilepsia,
60(5), 857-871.
Abstract:
Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.
OBJECTIVE: Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE). METHODS: We followed guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative. First, we identified outcomes that had been measured in research through a systematic review. Second, young people with RE, parents, and professionals were invited to take part in a Delphi survey in which participants rated the importance of candidate outcomes. Last, a face-to-face meeting was convened to seek consensus on which outcomes were critical to include and to ratify the final COS. RESULTS: from 37 eligible papers in the review, we identified and included 48 candidate outcomes in the survey. We sent invitations to 165 people registered to take part in the survey; of these, 102 (62%) completed Round 1, and 80 (78%) completed Round 2 (three young people, 16 parents, 61 professionals). In Round 2 we included four additional outcomes suggested by participants in Round 1. The consensus meeting included two young people, four parents, and nine professionals who were eligible to vote and ratified the COS as 39 outcomes across 10 domains. SIGNIFICANCE: Our methodology was a proportionate and pragmatic approach toward producing a COS for evaluating research on interventions aiming to improve the health of children with RE.
Abstract.
Author URL.
Bjornstad G, Wilkinson K, Cuffe-Fuller B, Fitzpatrick K, Borek A, Ukoumunne OC, Hawton A, Tarrant M, Berry V, Lloyd J, et al (2019). Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design.
Pilot and Feasibility Studies,
5(1).
Abstract:
Healthy Parent Carers peer-led group-based health promotion intervention for parent carers of disabled children: protocol for a feasibility study using a parallel group randomised controlled trial design
Abstract
. Background
. Parent carers of disabled children are at increased risk of mental and physical health problems. They often experience challenges to maintaining good health which have implications for their well-being and their ability to care for their children. In response to these needs, researchers and parent carers developed the Healthy Parent Carers (HPC) programme. It is a peer-led, group-based intervention that promotes behaviours associated with health and well-being. The aims of this trial are to assess the acceptability of the HPC programme and the feasibility of its delivery in the community and to assess the feasibility and acceptability of the design of the definitive trial to evaluate the programme’s effectiveness and cost-effectiveness.
.
. Methods
. We will establish six research sites and train facilitators to deliver the manualised intervention. Parent carers of children with special educational needs and disabilities will be individually randomised, stratified by group delivery site, to either take part in a group programme and online resources (intervention) or to receive access to the online resources only (control). Measures of mental health; well-being; health-related quality of life; health behaviours; patient activation; protective factors such as resilience, social connections, and practical support; and use of health care, social care, and wider societal resources will be collected before randomisation (baseline), immediately post-intervention, and 6 months later. Recruitment of participants, adherence to the programme, and the dose received will be assessed. Group sessions will be audio-recorded to evaluate the fidelity of delivery and participant engagement. Participants’ and facilitators’ feedback on the programme content and delivery, their experience, and the acceptability of the outcome measures and trial design will be collected through feedback forms, interviews, and focus groups.
.
. Discussion
. This trial will assess whether the programme delivery and evaluative trial design are feasible, to inform whether to progress to a definitive randomised controlled trial to test the effectiveness and cost-effectiveness of the Healthy Parent Carers programme.
.
. Trial registration
. ISRCTN, ISRCTN151144652, registered on 25 October 2018; ClinicalTrials.gov, NCT03705221, registered on 15 October 2018.
.
Abstract.
Humphreys G, King T, Jex J, Rogers M, Blake S, Thompson-Coon J, Morris C (2019). Sleep positioning systems for children and adults with a neurodisability: a systematic review.
British Journal of Occupational Therapy,
82(1), 5-14.
Abstract:
Sleep positioning systems for children and adults with a neurodisability: a systematic review
Introduction: Sleep positioning systems are often prescribed as part of a 24-hour postural management programme for children and adults with neurodisabilities. In a search for evidence of effectiveness for children with cerebral palsy a recent Cochrane review found two randomised controlled trials. This review aims to appraise a broader set of studies including any neurological diagnosis and users of all ages to inform therapists about the quality of the evidence underlying practice. Method: a comprehensive search for all peer-reviewed studies that evaluated the use of sleep positioning systems was conducted in MEDLINE, EMBASE, CINAHL, Cochrane Library databases, BNI, HMIC, PEDro, OTSeeker and clinical trials registries. Disability organisations, manufacturers and colleagues worldwide were also contacted. Titles were screened for relevance by two reviewers. Data were extracted into bespoke quantitative or qualitative forms by one reviewer and checked by a second. Findings were analysed into simple themes. Results: a total of 14 studies were eligible for inclusion; all were small and most were of low quality. Inferences of benefits cannot be made from the literature but also no harm was found. Conclusions: the body of evidence supporting practice remains small and mostly of low quality. Therapists should remain cautious when presenting the benefits to families.
Abstract.
Sellers D, Bryant E, Hunter A, Campbell V, Morris C (2019). The Eating and Drinking Ability Classification System for cerebral palsy: a study of reliability and stability over time.
J Pediatr Rehabil Med,
12(2), 123-131.
Abstract:
The Eating and Drinking Ability Classification System for cerebral palsy: a study of reliability and stability over time.
AIM: This study evaluated the inter-observer reliability and stability over time of the Eating and Drinking Ability Classification System (EDACS) for children and young people with cerebral palsy (CP). METHOD: Case records for 97 children with CP were examined to collect retrospective data about eating and drinking abilities at four time-points with a minimum of 2 years between each time-point. Sex, Gross Motor Function Classification System (GMFCS) level, presence of feeding tube and orthopaedic issues were recorded from case records. One speech and language therapist (SaLT1) classified eating and drinking ability using EDACS for all cases at all time-points; SaLT2 assigned EDACS levels for 50 cases at time-point 1; SaLT3 assigned EDACS levels for 24 cases at all time-points. Inter-observer reliability and stability over time were assessed using the Intraclass Correlation Coefficient (ICC). Associations between EDACS levels and functioning recorded with other Functional Classification Systems (FCSs) were calculated using Kendall's tau (τ). RESULTS: Out of 97 children, 48 were male, 48 had feeding tubes, and 83 had orthopaedic issues. ICC for EDACS levels recorded by SaLT1 across all time-points was 0.97 (95% CI 0.96-0.98); changes in EDACS levels occurred infrequently and never by more than one level. ICC between SaLT1 and SaLT2 at time-point 1 was 0.8 (95% CI 0.67-0.89); ICC between SaLT1 and SaLT3 across all time-points was 0.95 (95% CI 0.92-0.98). Association between GMFCS and EDACS was moderate (τ= 0.58). INTERPRETATION: Retrospective use of EDACS to classify children's eating and drinking abilities appears reliable; EDACS appeared stable over 6 or more years in 86% of the cases.
Abstract.
Author URL.
Kandiyali R, Hawton A, Cabral C, Mytton J, Shilling V, Morris C, Ingram J (2019). Working with Patients and Members of the Public: Informing Health Economics in Child Health Research.
Pharmacoecon Open,
3(2), 133-141.
Abstract:
Working with Patients and Members of the Public: Informing Health Economics in Child Health Research.
This paper considers patient and public involvement (PPI) in health economics research and how this might be facilitated. PPI refers to research carried out 'with' or 'by' members of the public and is now an important aspect of health research policies internationally. Patients and members of the public can be involved in all stages of the research cycle, from establishing whether the topic is important to influencing details of study design, wording of patient-facing documentation and interpretation and dissemination of findings. PPI has become commonplace in health services research. In the context of clinical trials, it has become imperative, with, for example, patients and members of the public informing the selection of outcome measures and recruitment methods, and qualitative research is frequently steered by PPI input regarding the content of interview topic guides and the interpretation of study findings. It is less common for PPI to be explicitly reported in the economic components of health services research. However, we argue that involvement is no less important in this area. The fundamental rationale for involving people in research is that it promotes democratic principles, research quality and relevance to service users. These arguments equally apply to health economics as to other health research disciplines. Our overarching aim in this paper is to show how health economic research might be informed by PPI. We report our experiences of PPI via case studies in child health, reflect on our learnings, and make suggestions for future research practice. Plain Language Summary This paper considers how to involve patients and members of the public in health economics research.Health economists often carry out research into the value for money (sometimes called 'cost effectiveness') of new ways of treating people. This can help in decisions about which treatments are publically funded. In an economic evaluation, the economist identifies and values the key things used to treat someone who is unwell. They also have to measure how unwell that person is and whether their health changes with treatment. They do this by asking them questions about how they rate specific aspects of their health. Economists compare costs and health outcomes of different treatments. Patient and public involvement in health research is really important because the public fund health systems (through taxation in the UK) and benefit from healthcare. This paper shares our ideas on and experiences involving the public in health economic research studies. All our examples come from the involvement of children and/or parents. We think our approaches would also apply to adults.
Abstract.
Author URL.
Hunt H, Abbott R, Boddy K, Whear R, Wakely L, Bethel A, Morris C, Prosser S, Collinson A, Kurinczuk J, et al (2019). “They've walked the walk”: a systematic review of quantitative and qualitative evidence for parent-to-parent support for parents of babies in neonatal care.
Journal of Neonatal Nursing,
25(4), 166-176.
Abstract:
“They've walked the walk”: a systematic review of quantitative and qualitative evidence for parent-to-parent support for parents of babies in neonatal care
The aim of this systematic review was to explore the effects and experiences of parent-to-parent support in neonatal intensive care from the perspectives of those giving, receiving, or implementing support. Electronic database searches (14 databases; February 2018) were supplemented with forward and backward citation chasing. Study selection, data extraction and quality appraisal were performed independently by two reviewers. Fourteen studies (6 quantitative and 8 qualitative) met our inclusion criteria. Four major themes were identified in the qualitative literature: ‘trust’, ‘hope’, ‘information’, and ‘connecting’. Quantitative studies showed parent-to-parent support increased perceptions of support, reduced maternal stress, and increased mothers' confidence in the ability to care for their baby. Whilst the rich qualitative evidence suggested mostly positive experiences of parent-to-parent support from all perspectives, robust trial evidence was lacking. Furthermore, differences in models for implementing parent-to-parent support provided limited opportunities to develop recommendations to guide best practice. The protocol for this study was registered on PROSPERO, registration number CRD42018090569.
Abstract.
Thomas N, Blake S, Morris C, Moles DR (2018). Autism and primary care dentistry: parents' experiences of taking children with autism or working diagnosis of autism for dental examinations.
Int J Paediatr Dent,
28(2), 226-238.
Abstract:
Autism and primary care dentistry: parents' experiences of taking children with autism or working diagnosis of autism for dental examinations.
BACKGROUND: Accessing and receiving preventative dental treatment can be difficult for children with autism due to sensory processing disorders and/or challenging behaviours coupled with a reported reluctance by dentists to treat these children. AIM: to gather dental experiences of UK parents of children with autism or working diagnosis of autism and explore how they feel primary care dental services can be improved. DESIGN: a total of 17 parents of children with a diagnosis or working diagnosis of autism took part in semi-structured interviews. Data were analysed thematically. RESULTS: Key themes identified were flexibility of the dental team and environment, confidence of the parents to advocate for their children's needs, continuity of services and clear referral pathways to specialist services. Cross-cutting all themes was the value of clear communication. The experiences provide greater understanding of issues such as hyper-empathy, the dental chair, challenges of the waiting room, perceived medical authority, and the importance of continuation of care. CONCLUSION: in line with previous research about the importance of family-centred care, a strong relationship between parents and the whole dental team is essential for children with autism to access dental examinations and have satisfactory experience of care.
Abstract.
Author URL.
Borek A, McDonald B, Fredlund M, Bjornstad GJ, Logan GS, Morris C (2018). Healthy Parent Carers programme: development and feasibility of a novel group-based health-promotion intervention. BMC Public Health, 18, 270-270.
Hunt H, Whear R, Boddy K, Wakely L, Bethel A, Morris C, Abbott R, Prosser S, Collinson A, Kurinczuk J, et al (2018). Parent-to-parent support interventions for parents of babies cared for in a neonatal unit - Protocol of a systematic review of qualitative and quantitative evidence.
Systematic Reviews,
7(1).
Abstract:
Parent-to-parent support interventions for parents of babies cared for in a neonatal unit - Protocol of a systematic review of qualitative and quantitative evidence
Background: Parents of babies admitted to neonatal units experience an arduous emotional journey. Feelings of helplessness, fear, sadness, guilt, grief and anger are common. These feelings can lead to anxiety, depression and post-traumatic stress which may persist long after discharge from the unit. Support from a parent with first-hand experience able to empathise with problems and challenges may help. This systematic review will identify quantitative and qualitative evidence to address the role of parent-to-parent support interventions for families of babies cared for in neonatal units, and combine the findings in an integrated synthesis. Methods: We are working in collaboration with a study-specific Parent Advisory Group (PAG) of parents who have relevant and varied lived experience of having a baby in neonatal care and those who have been involved in providing peer support. With the PAG, we will carry out a systematic review bringing together all existing research on parent-to-parent support for parents of babies cared for in neonatal units. This will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The protocol has been produced in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol extension (PRISMA-P). We have co-produced a plain language protocol summary with the PAG which details the different stages of the project, and this is available via our website (http://clahrc-peninsula.nihr.ac.uk/research/parent-to-parent-support) for anyone interested in learning more about the detail of the project. Discussion: all outputs will be available on the NIHR CLAHRC South West Peninsula (PenCLAHRC) website and promoted via PenCLAHRC networks as well as organisations that have been contacted throughout the project. PAG members will be involved in writing and reviewing the academic paper and final report and in co-producing dissemination products such as plain language summaries. The PAG will influence the main conclusions of the systematic review, aid interpretation and help to communicate results in the most appropriate ways. We will hold an impact conference with representatives from neonatal units, national neonatal networks, commissioners of services and parents to discuss what the findings mean for clinical practice and service provision. Systematic review registration: PROSPERO CRD42018090569
Abstract.
McConachie H, Livingstone N, Morris C, Beresford B, Le Couteur A, Gringras P, Garland D, Jones G, Macdonald G, Williams K, et al (2018). Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder.
Journal of Autism and Developmental Disorders,
48(4), 1041-1051.
Abstract:
Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder
Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.
Abstract.
Bull K, Darlington A-S, Grootenhuis M, Hargrave D, Liossi C, Morris C, Walker D, Kennedy C (2018). QOL-19. THE PROMOTE STUDY: PATIENT REPORTED OUTCOME MEASURES ONLINE TO ENHANCE COMMUNICATION AND QUALITY OF LIFE AFTER CHILDHOOD BRAIN TUMOUR. Neuro-Oncology, 20(suppl_2), i161-i161.
Morris C, Dunkley C, Gibbon FM, Currier J, Roberts D, Rogers M, Crudgington H, Bray L, Carter B, Hughes D, et al (2017). Core Health Outcomes in Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set.
Trials,
18(1).
Abstract:
Core Health Outcomes in Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set.
BACKGROUND: There is increasing recognition that establishing a core set of outcomes to be evaluated and reported in trials of interventions for particular conditions will improve the usefulness of health research. There is no established core outcome set for childhood epilepsy. The aim of this work is to select a core outcome set to be used in evaluative research of interventions for children with rolandic epilepsy, as an exemplar of common childhood epilepsy syndromes. METHODS: First we will identify what outcomes should be measured; then we will decide how to measure those outcomes. We will engage relevant UK charities and health professional societies as partners, and convene advisory panels for young people with epilepsy and parents of children with epilepsy. We will identify candidate outcomes from a search for trials of interventions for childhood epilepsy, statutory guidance and consultation with our advisory panels. Families, charities and health, education and neuropsychology professionals will be invited to participate in a Delphi survey following recommended practices in the development of core outcome sets. Participants will be able to recommend additional outcome domains. Over three rounds of Delphi survey participants will rate the importance of candidate outcome domains and state the rationale for their decisions. Over the three rounds we will seek consensus across and between families and health professionals on the more important outcomes. A face-to-face meeting will be convened to ratify the core outcome set. We will then review and recommend ways to measure the shortlisted outcomes using clinical assessment and/or patient-reported outcome measures. DISCUSSION: Our methodology is a proportionate and pragmatic approach to expediently produce a core outcome set for evaluative research of interventions aiming to improve the health of children with epilepsy. A number of decisions have to be made when designing a study to develop a core outcome set including defining the scope, choosing which stakeholders to engage, most effective ways to elicit their views, especially children and a potential role for qualitative research.
Abstract.
Author URL.
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, Altman DG, Moher D, Barber R, Denegri S, et al (2017). GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Research Involvement and Engagement, 3(1).
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, Altman DG, Moher D, Barber R, Denegri S, et al (2017). GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.
BMJ,
358Abstract:
GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.
Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2.Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.Results 143 participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus.Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on the BMJ and Research Involvement and Engagement journal websites.
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Gumm R, Thomas E, Lloyd C, Hambly H, Tomlinson R, Logan G, Morris C (2017). Improving communication between staff and disabled children in hospital wards: testing the feasibility of a training intervention developed through intervention mapping. BMJ Paediatrics Open, 1e000103
Farr W, Male I, Green D, Morris C, Gage H, Bailey S, Speller S, Colville V, Jackson M, Bremner S, et al (2017). Methodological Issues of using Placebos in Interventions Based on Digital Technology. Journal of Mobile Technology in Medicine, 6(2), 56-63.
Brett J, Staniszewska S, Simera I, Seers K, Mockford C, Goodlad S, Altman D, Moher D, Barber R, Denegri S, et al (2017). Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines.
BMJ Open,
7Abstract:
Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines
Introduction Patient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).Methods There were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.Discussion the process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.
Abstract.
Farr W, Green D, Male I, Morris C, Bailey S, Gage H, Speller S, Colville V, Jackson M, Bremner S, et al (2017). Therapeutic potential and ownership of commercially available consoles in children with cerebral palsy.
British Journal of Occupational Therapy,
80(2), 108-116.
Abstract:
Therapeutic potential and ownership of commercially available consoles in children with cerebral palsy
Introduction We conducted a survey amongst families of children with cerebral palsy to ascertain the ownership and therapeutic use and potential of commercial games consoles to improve motor function. Method Three hundred families in South East England were identified through clinical records, and were requested to complete an anonymised questionnaire. Results a total of 61 families (20% response) returned a completed questionnaire with 41 (68%) identified males and 19 (32%) identified females with cerebral palsy, with a mean age of 11 years 5 months (SD 3Y 7M). The large majority of families, 59 (97%), owned a commercial console and the child used this for 50–300 minutes a week. Returns by severity of motor impairment were: Gross Motor Function Classification System I (22%), II (32%), III (13%), IV (15%), V (18%). Consoles were used regularly for play across all Gross Motor Function Classification System categories. Conclusion the potential of games consoles, as home-based virtual reality therapy, in improving the motor function of children with cerebral palsy should be appropriately tested in a randomised controlled trial. Wide ownership, and the relative ease with which children engage in the use of commercially-based virtual reality therapy systems, suggests potential as a means of augmenting therapy protocols, taking advantage of interest and participation patterns of families.
Abstract.
Armstrong M, Morris C, Abraham C, Ukoumunne OC, Tarrant M (2016). Children's contact with people with disabilities and their attitudes towards disability: a cross-sectional study.
Disabil Rehabil,
38(9), 879-888.
Abstract:
Children's contact with people with disabilities and their attitudes towards disability: a cross-sectional study.
PURPOSE: to explore the association between children's self-reported contact with people with disabilities and attitudes towards them, as well the potential mediating influence of anxiety about interacting with people with disabilities and empathy for them. METHOD: 1881 children, aged 7-16 years, from 20 schools in South West England completed a survey assessing their contact with people with disabilities and their attitudes towards them. Anxiety about interacting with people with disabilities and empathy towards them were examined as potential mediators. Gender, school year, perceived similarity between people with and without disabilities, proportion of children with additional needs at the school and socioeconomic status (SES) were assessed as moderators. A random effects ("multilevel") regression model was used to test the contact-attitude association and moderation, and path analysis was used to test for mediation. RESULTS: Participants with more self-reported contact reported more positive attitudes towards disability (p
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Author URL.
Coon JT, Gwernan-Jones R, Moore D, Richardson M, Shotton C, Pritchard W, Morris C, Stein K, Ford T (2016). End-user involvement in a systematic review of quantitative and qualitative research of non-pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges.
Health Expectations,
19(5), 1084-1097.
Abstract:
End-user involvement in a systematic review of quantitative and qualitative research of non-pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges
© 2015 the Authors. Health Expectations. Published by John Wiley. &. Sons Ltd. Background: the benefits of end-user involvement in health-care research are widely recognized by research agencies. There are few published evaluations of end-user involvement in systematic reviews. Objectives: (i) Describe end-user involvement in a complex mixed-methods systematic review of ADHD in schools, (ii) reflect on the impact of end-user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement. Methods: End-users were involved in all stages of the project, both as authors and as members of an advisory group. In addition, several events were held with groups of relevant end-users during the project. Results: End-user input (i) guided the direction of the research, (ii) contributed to a typology of interventions and outcomes, (iii) contributed to the direction of data analysis and (iv) contributed to the robustness of the syntheses by demonstrating the alignment of interim findings with lived experiences. Challenges included (i) managing expectations, (ii) managing the intensity of emotion, (iii) ensuring that involvement was fruitful for all not just the researcher, (iv) our capacity to communicate and manage the process and (v) engendering a sense of involvement amongst end-users. Conclusions: End-user involvement was an important aspect of this project. To minimize challenges in future projects, a recognition by the project management team and the funding provider that end-user involvement even in evidence synthesis projects is resource intensive is essential to allow appropriate allocation of time and resources for meaningful engagement.
Abstract.
Armstrong M, Morris C, Abraham C, Tarrant M (2016). Interventions utilising contact with people with disabilities to improve children's attitudes towards disability: a systematic review and meta-analysis.
Disability and Health Journal,
10(1), 11-22.
Abstract:
Interventions utilising contact with people with disabilities to improve children's attitudes towards disability: a systematic review and meta-analysis
© 2016 Elsevier Inc. Background Children with disabilities are often the target of prejudice from their peers. The effects of prejudice include harmful health consequences. The Contact Hypothesis has previously shown to promote positive attitudes towards a range of social groups. Objective to conduct a systematic review and meta-analysis on the effectiveness of school-based interventions for improving children's attitudes towards disability through contact with people with disabilities. Methods a comprehensive search was conducted across multiple databases. Studies were included if it evaluated an intervention that aimed to improve children's attitudes towards disability and involved either direct (in-person) or indirect (e.g. extended) contact with people with disabilities. Data were synthesised in a meta-analysis. Results Twelve studies met the inclusion criteria. of these, 11 found significant effects: six used direct contact, two used extended contact, two used parasocial (media-based) contact and one used guided imagined contact. One parasocial contac t intervention found no significant effects. Three meta-analyses showed direct contact (d = 0.55, 95% CI 0.20 to 0.90) and extended contact (d = 0.61, 95% CI 0.15 to 1.07) improved children's attitudes; there was no evidence for parasocial contact (d = 0.20, 95% CI -0.01 to 1.40). Conclusions Direct, extended, and guided imagined contact interventions are effective in improving children's attitudes towards disability; there was no evidence for parasocial contact.
Abstract.
Janssens A, Rogers M, Gumm R, Jenkinson C, Tennant A, Logan S, Morris C (2016). Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies.
Developmental Medicine and Child Neurology,
58(5), 437-451.
Abstract:
Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies
Aim: to identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient-reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence. Method: MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria. Results: We identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS). Interpretation: on the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.
Abstract.
Armstrong M, Morris C, Tarrant M, Abraham, Horton M (2016). Rasch analysis of the Chedoke–McMaster Attitudes towards Children with Handicaps scale. Disability and Rehabilitation
Morris C, Blake S, Stimson A, Borek A, Maguire K (2016). Resources for parents raising a disabled child in the UK. Paediatrics and Child Health (United Kingdom)
Janssens A, Thompson-Coon J, Rogers M, Allen K, Green C, Jenkinson C, Tennant A, Logan S, Morris C (2015). A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part I: Descriptive Characteristics. Value in Health, 18(2), 315-333.
Janssens A, Rogers M, Thompson Coon J, Allen K, Green C, Jenkinson C, Tennant A, Logan S, Morris C (2015). A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part II: Evaluation of Psychometric Performance of English-Language Versions in a General Population. Value in Health, 18(2), 334-345.
Bailey S, Boddy K, Briscoe S, Morris C (2015). Involving disabled children and young people as partners in research: a systematic review.
Child Care Health Dev,
41(4), 505-514.
Abstract:
Involving disabled children and young people as partners in research: a systematic review.
Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research.
Abstract.
Author URL.
Morris C, Janssens A, Shilling V, Allard A, Fellowes A, Tomlinson R, Williams J, Thompson Coon J, Rogers M, Beresford B, et al (2015). Meaningful health outcomes for paediatric neurodisability: stakeholder prioritisation and appropriateness of patient reported outcome measures.
Health and Quality of Life Outcomes,
13:87Abstract:
Meaningful health outcomes for paediatric neurodisability: stakeholder prioritisation and appropriateness of patient reported outcome measures
Background
Health services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients’ priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties.
The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.
Methods
Relevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health.
Results
A total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable.
Conclusions
We propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.
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Richardson M, Moore D, Gwernan-Jones R, Thompson-Coon J, Ukoumunne O, Rogers M, Whear R, Newlove-Delgado T, Logan S, Morris C, et al (2015). Non pharmacological interventions for Attention Deficit Hyperactivity Disorder (ADHD) delivered in school settings: Systematic reviews of quantitative and qualitative research. Health Technology Assessment, 19(45)
Shilling V, Bailey S, Logan S, Morris C (2015). Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one-to-one service, a qualitative study.
Child Care Health DevAbstract:
Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one-to-one service, a qualitative study.
Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support.
Abstract.
Author URL.
Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, Janssens A, Stimson A, Coghill J, Robinson K, et al (2015). Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership.
BMJ Open,
1(5).
Author URL.
Blake SF, Logan G, Humphreys G, Matthews J, Rogers M, Thompson Coon J, Wyatt K, Morris C (2015). Sleep positioning systems for children with cerebral palsy.
Cochrane Database of Systematic Reviews(11:CD009257).
Author URL.
McConachie H, Parr JR, Glod M, Hanratty J, Livingstone N, Oono IP, Robalino S, Baird G, Beresford B, Charman T, et al (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder.
Health Technology Assessment,
19(41).
Abstract:
Systematic review of tools to measure outcomes for young children with autism spectrum disorder
Background
The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.
Objectives
To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.
Methods
The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.
Results
The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).
Conclusions
This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.
Future work
Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.
Study registration
This study is registered as PROSPERO CRD42012002223.
Funding
The National Institute for Health Research Health Technology Assessment programme.
Abstract.
Sharkey S, Lloyd C, Tomlinson R, Thomas E, Martin A, Logan S, Morris C (2014). Communicating with disabled children when inpatients: Barriers and facilitators identified by parents and professionals in a qualitative study.
Health Expectations Author URL.
Sellers D, Mandy A, Pennington L, Hankins M, Morris C (2014). Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy.
Developmental Medicine and Child Neurology,
56(3), 245-251.
Author URL.
Camden C, Shikako-Thomas K, Nguyen T, Graham E, Thomas E, Sprung J, Morris C, Russell DJ (2014). Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts.
Disability and Rehabilitation Author URL.
Janssens A, Williams J, Tomlinson R, Logan S, Morris C (2014). Health outcomes for children with neurodisability: what do professionals regard as primary targets?.
Arch Dis ChildAbstract:
Health outcomes for children with neurodisability: what do professionals regard as primary targets?
To identify what aspects of health clinicians target when working with children with neurodisability, and which might be appropriate to assess the performance of health services.
Abstract.
Author URL.
Morris C, Janssens A, Allard A, Thompson Coon J, Shilling V, Tomlinson R, Williams J, Fellowes A, Rogers M, Fellowes A, et al (2014). Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting.
Health Serv Deliv Res,
15(2).
Author URL.
Allard A, Fellowes A, Shilling V, Janssens A, Beresford B, Morris C (2014). Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents.
BMJ Open(4:e004611).
Author URL.
Shilling V, Bailey S, Logan S, Morris C (2014). Peer support for parents of disabled children part 1: perceived outcomes of a one-to-one service, a qualitative study.
Child Care Health DevAbstract:
Peer support for parents of disabled children part 1: perceived outcomes of a one-to-one service, a qualitative study.
Parents of disabled children are encouraged to seek peer support. Delivering one-to-one support requires resources; therefore, investigating how these services may impact on families and those providing the service is important when evaluating such services.
Abstract.
Author URL.
Sellers D, Pennington L, Mandy A, Morris C (2013). A systematic review of ordinal scales used to classify the eating and drinking abilities of individuals with cerebral palsy.
Dev Med Child Neurol,
4(56), 313-322.
Author URL.
McHugh C, Bailey S, Shilling V, Morris C (2013). Meeting the information needs of families of children with chronic health conditions.
Phys Occup Ther Pediatr,
33(3), 265-270.
Author URL.
Shilling V, Morris C, Thompson-Coon J, Ukoumunne O, Rogers M, Logan S (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies.
Dev Med Child Neurol,
55(7), 602-609.
Abstract:
Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies.
AIM: to review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well-being, impact on family, and economic and service implications. METHOD: We comprehensively searched multiple databases. Eligible studies evaluated parent-to-parent support and reported on the psychological health and experience of giving or receiving support. There were no limits on the child's condition, study design, language, date, or setting. We sought to aggregate quantitative data; findings of qualitative studies were combined using thematic analysis. Qualitative and quantitative data were brought together in a narrative synthesis. RESULTS: Seventeen papers were included: nine qualitative studies, seven quantitative studies, and one mixed-methods evaluation. Four themes were identified from qualitative studies: (1) shared social identity, (2) learning from the experiences of others, (3) personal growth, and (4) supporting others. Some quantitative studies reported a positive effect of peer support on psychological health and other outcomes; however, this was not consistently confirmed. It was not possible to aggregate data across studies. No costing data were identified. CONCLUSION: Qualitative studies strongly suggest that parents perceive benefit from peer support programmes, an effect seen across different types of support and conditions. However, quantitative studies provide inconsistent evidence of positive effects. Further research should explore whether this dissonance is substantive or an artefact of how outcomes have been measured.
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Author URL.
Morris C, Janssens A, Tomlinson R, Williams J, Logan S (2013). Towards a definition of neurodisability: a Delphi survey.
Dev Med Child Neurol,
55(12), 1103-1108.
Abstract:
Towards a definition of neurodisability: a Delphi survey.
AIM: the aim of this study was to develop, systematically, a consensus-based definition for 'neurodisability' that is meaningful to health professionals and parents of children with neurological conditions. METHOD: a multidisciplinary group of health professionals was recruited through child development teams and professional societies in the UK; several parents of children with neurological conditions worked with the research team. Professionals participated in three rounds of a Delphi survey. Participants rated their agreement with a proposed definition in each round, and feedback was used to refine the definition. Finally, a perspective was sought from international experts. RESULTS: Responses to the three rounds were as follows: round 1,245 out of 290 (84.4%); round 2,242 out of 300 (80.6%); and round 3,237 out of 297 (79.7%). Agreement with the proposed definition was extremely high in every round (89.0%, 90.1%, and 93.6% respectively). The final version of the definition was widely endorsed among professionals, parents, and a small number of international colleagues. The final definition is as follows: 'Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and/or neuromuscular system and create functional limitations. A specific diagnosis may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour'. INTERPRETATION: an agreed definition of neurodisability will be useful for conducting research or clinical evaluations with people affected by neurological problems.
Abstract.
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Bates J, Stebbins J, McCahill J, Theologis T, Morris C (2012). Correlation between the Oxford Foot Model kinematics and the Oxford Ankle Foot questionnaire. Gait & Posture, 36
Shilling V, Edwards V, Rogers M, Morris C (2012). The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals.
Child Care Health Dev,
38(6), 778-788.
Abstract:
The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals.
Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpatients. The aim of this structured review and synthesis was to integrate findings from qualitative studies reporting the experience of disabled children when they are hospital inpatients. Inclusion criteria were: qualitative studies that focused on the experience of children less than 18 years old, with a chronic health condition or neurodisability, during an inpatient stay. Studies of outpatient episodes or intensive care units were excluded. A systematic search identified relevant abstracts, selected papers were reviewed and data were extracted. The synthesis involved elucidating and integrating common themes. Eight relevant papers were identified; data were gathered from children, parents and staff. Communication between children and staff was a dominant theme and comprised giving the child information about their condition and appropriate involvement of the child/young person in discussions and decision making that affected them. Also important was communication between parents and staff, particularly around the division of care for their child. Other themes included emotions, particularly fears, the ward environment and confidence in staff. The review suggests that disabled children's experience as inpatients is not always optimal. Improving the communication skills of ward staff and providing information to disabled children and their families would improve disabled children's experience when they are inpatients.
Abstract.
Author URL.
Morris C, Bowers R, Ross K, Stevens P, Phillips D (2011). Orthotic management of cerebral palsy: recommendations from a consensus conference.
NeuroRehabilitation,
28(1), 37-46.
Abstract:
Orthotic management of cerebral palsy: recommendations from a consensus conference.
An international multidisciplinary group of healthcare professionals and researchers participated in a consensus conference on the management of cerebral palsy, convened by the International Society for Prosthetics and Orthotics. Participants reviewed the evidence and considered contemporary thinking on a range of treatment options including physical and occupational therapy, and medical, surgical and orthotic interventions. The quality of many of the reviewed papers was compromised by inadequate reporting and lack of transparency, in particular regarding the types of patients and the design of the interventions being evaluated. Substantial evidence suggests that ankle-foot orthoses (AFOs) that control the foot and ankle in stance and swing phases can improve gait efficiency in ambulant children (GMFCS levels I-III). By contrast, little high quality evidence exists to support the use of orthoses for the hip, spine or upper limb. Where the evidence for orthosis use was not compelling consensus was reached on recommendations for orthotic intervention. Subsequent group discussions identified recommendations for future research. The evidence to support using orthoses is generally limited by the brevity of follow-up periods in research studies; hence the extent to which orthoses may prevent deformities developing over time remains unclear. The full report of the conference can be accessed free of charge at www.ispoint.org.
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Lloyd C, Logan S, McHugh C, Humphreys G, Parker S, Beswick D, Beswick M, Rogers M, Thompson-Coon J, Morris C, et al (2011). Sleep positioning for children with cerebral palsy.
Morris C, Shilling V, McHugh C, Wyatt K (2011). Why it is crucial to involve families in all stages of childhood disability research.
Dev Med Child Neurol,
53(8), 769-771.
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Rosenbaum P, Gorter JW, Palisano R, Morris C (2010). 'The relationship of cerebral palsy subtype and functional motor impairment: a population-based study'.
DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY,
52(7), 682-683.
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Morris C, Doll H, Wainwright A, Davies N, Theologis T, Fitzpatrick R (2010). The Oxford Ankle Foot Questionnaire for Children: review of development and potential applications.
Prosthet Orthot Int,
34(3), 238-244.
Abstract:
The Oxford Ankle Foot Questionnaire for Children: review of development and potential applications.
There is increasing recognition of the credibility and utility of patient reported outcome measures, both in research and as routine quality indicators. This paper reviews the development of a questionnaire for children with foot or ankle problems and integrates the findings from three previously published studies in a cohesive way for the orthotic community. The Oxford Ankle Foot Questionnaire for Children was designed to evaluate the effectiveness of interventions. The development process was conducted in three phases. First the items were devised through focus groups with children affected by foot and ankle problems, and their parents. Second, test versions of child and parent questionnaires were evaluated to enable scales to be developed and tested for validity and reliability. Finally, findings from a prospective study assessing how scores changed over time and/or with treatment supported the longitudinal validity and responsiveness of the scales. The questionnaire offers an inexpensive and expedient means to evaluate the effectiveness of orthoses and other interventions used to treat children's foot or ankle problems. The Oxford Ankle Foot Questionnaire for Children has broad utility both in routine clinical settings, or applied research to evaluate treatment programmes and interventions used in paediatric orthopaedics, trauma and rheumatology.
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Morris C, Condie D (2009). Aiming to improve the health care of people with cerebral palsy worldwide: a report of an International Society for Prosthetics and Orthotics conference.
Dev Med Child Neurol,
51(9).
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Morris C (2009). Measuring participation in childhood disability: how does the capability approach improve our understanding?.
Dev Med Child Neurol,
51(2), 92-94.
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Morris C, Doll H, Davies N, Wainwright A, Theologis T, Willett K, Fitzpatrick R (2009). The Oxford Ankle Foot Questionnaire for children: responsiveness and longitudinal validity.
Qual Life Res,
18(10), 1367-1376.
Abstract:
The Oxford Ankle Foot Questionnaire for children: responsiveness and longitudinal validity.
PURPOSE: to evaluate how scores from the Oxford Ankle Foot Questionnaire change over time and with treatment using both distribution-based and anchor-based approaches. METHODS: Eighty children aged 5-16 and their parent or career completed questionnaires at orthopaedic or trauma outpatient clinics. They were asked to complete and return a second set of questionnaires again within 2 weeks (retest), and then mailed a third set of questionnaires to complete again after 2 months (follow-up). The follow-up questionnaires included a global rating of change 'transition' item. RESULTS: Child- and parent-reported mean domain scores (Physical, School & Play, and Emotional) were all stable at retest, whereas positive mean changes were observed at follow-up. As we hypothesised, trauma patients had poorer scores than elective patients at baseline, and showed greater improvement at follow-up. For trauma patients, mean changes in per cent scores were large (scores improved between 40 and 56 for the Physical and School & Play domains, and 17 and 21 for Emotional); all effect sizes (ES) were large (>0.8). For elective patients, the mean improvement in per cent scores were more moderate (Physical: child 10, ES = 0.4, parent 11, ES = 0.5; School & Play child 0, ES = 0, parent 9 ES = 0.4; Emotional: child 6, ES = 0.2; parents 8, ES > 0.3). Minimal detectable change (MDC(90)), an indication of measurement error, ranged from 6 to 8. Half the standard deviation of baseline scores ranged from 11 to 18. Minimal important difference could only be calculated for elective patients (9 child and 13 parent ratings), these ranged from 7 to 17. CONCLUSIONS: the findings support the responsiveness and longitudinal validity of the scales. Changes in domain scores of, or exceeding, the MDC(90) (6-8) are likely to be beyond measurement error; further work is required to refine the estimate of change that can be considered important.
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Malkin K, Dawson J, Harris R, Parfett G, Horwood P, Morris C, Lavis G (2008). A year of foot and ankle orthotic provision for adults: prospective consultations data, with patient satisfaction survey.
Foot (Edinb),
18(2), 75-83.
Abstract:
A year of foot and ankle orthotic provision for adults: prospective consultations data, with patient satisfaction survey.
OBJECTIVES: to characterise 12 months' adult, foot and ankle orthotic out-patient consultations in a regional centre; and to survey patients regarding their satisfaction with services received. METHODS: Prospective survey questionnaires completed by: (1) orthotists, during consecutive clinic consultations (n=4402 representing 2494 patients); (2) all patients receiving foot or ankle orthoses (n=1469), mailed 5 weeks later. Questions included a standard foot pain item, patients' perceived usefulness of the orthosis, and satisfaction with services received. Logistic regression identified factors associated with patients finding their orthosis 'very' or 'fairly helpful'. RESULTS: Consultations addressed myriad foot, ankle or other conditions. EVA (soft) foot orthoses were most commonly prescribed. The response rate from patients was 72%. Most (73%) said their orthosis would be 'very' or 'fairly helpful'. Following adjustment, females were less likely than males to find orthoses helpful (OR 0.71, p=0.031). All older age groups were at least twice as likely to find orthoses helpful as patients aged
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Morris C, Doll H, Wainwright A, Theologis T, Fitzpatrick R (2008). Development of the Oxford ankle foot questionnaire for children: scaling, relaibility and validity. Journal of Bone and Joint Surgery, 90-B, 1451-1456.
Morris C (2008). Development of the gross motor function classification system (1997).
Dev Med Child Neurol,
50(1).
Abstract:
Development of the gross motor function classification system (1997).
To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five-level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertize in cerebral palsy) was achieved. Interrater reliability (kappa) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.
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Morris C (2008). The EQUATOR Network: promoting the transparent and accurate reporting of research.
Dev Med Child Neurol,
50(10).
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Morris C (2007). A review of the efficacy of lower-limb orthoses used for cerebral palsy. Developmental Medicine & Child Neurology, 44(3), 205-211.
Morris C (2007). Definition and classification of cerebral palsy: a historical perspective.
Developmental Medicine and Child Neurology,
49(SUPPL.109), 3-7.
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Morris C, Liabo K, Wright P, Fitzpatrick R (2007). Development of the Oxford ankle foot questionnaire: finding out how children are affected by foot and ankle problems.
Child Care Health Dev,
33(5), 559-568.
Abstract:
Development of the Oxford ankle foot questionnaire: finding out how children are affected by foot and ankle problems.
BACKGROUND: a large number of children are affected by foot and ankle problems owing to congenital deformities, clinical syndromes, neuromuscular conditions or trauma. This study aimed to identify how children's lives are affected by foot and ankle problems from the child's perspective as the first stage in developing a family-assessed instrument. METHODS: This was a qualitative study using focus groups involving children with a variety of foot and ankle problems aged 5-7, 8-11 and 12-15 years, and separate concurrent groups for their parents. The focus groups were child-centred and involved creative activities; there were two main exercises. The first activity involved agreeing or disagreeing with several statements about children with foot and ankle problems; the second activity explored a typical 'day in the life' of a child with a foot or ankle problem. All the groups were audio-recorded and transcribed; grounded theory and comparative content analysis were used to identify and code themes participants reported as important. RESULTS: the groups ran successfully with children in all ages. Consistent themes identified by all groups were; (i) specific activities that were more difficult; (ii) physical symptoms; (iii) reduced participation in certain life situations; and (iv) self-consciousness. There were few differences in the issues raised by each age group although the life situations children encounter tend to become more complex as they get older; there is also the difficulty of negotiating a larger school campus at senior compared with junior school. There were no differences in the issues raised by children and their parents. CONCLUSIONS: Focus groups involving creative child-centred activities were used successfully to elicit children's experience of their health problems. In addition to expected activity limitations and physical symptoms some children with foot or ankle problems endure participation restrictions and self-consciousness that are exacerbated by the behaviour of other people or their environment, particularly at school. The findings of this study informed the development of a questionnaire to measure how severely children are affected by foot or ankle problems from the child's perspective.
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Morris C (2007). Measuring children's participation.
Dev Med Child Neurol,
49(9).
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Morris C (2007). Orthotic management of cerebral palsy.
DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY,
49(10), 791-796.
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Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL (2006). Do the abilities of children with cerebral palsy explain their activities and participation?.
Dev Med Child Neurol,
48(12), 954-961.
Abstract:
Do the abilities of children with cerebral palsy explain their activities and participation?
The aim of this study was to use family-assessed instruments and details of children's impairments to explore factors affecting the activities and participation of children with cerebral palsy (CP). A postal survey was conducted with families of a geographically defined population of children with CP aged 6 to 12 years. Family-assessed indices of children's activities and participation were the Activities Scale for Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). Families also assessed children's abilities using the Gross Motor Function and Manual Ability Classification Systems (GMFCS; MACS). Details of children's impairments were available from the 4Child epidemiological database and used with the GMFCS and MACS as explanatory variables in multiple regression analyses to identify their effect on children's activities and participation. Families of 175/314 (56%) children returned an assessment using the GMFCS and 129 (41%) children participated fully by returning all the questionnaires. Full participants (72 males, 57 females) did not differ from those who did not take part by their age, sex, CP characteristics, or associated impairments: GMFCS Level I-25, Level II-43, Level III-15, Level IV-14, Level V-23; MACS Level I-14, Level II-30, Level III-18, Level IV-13, Level V-13. Scores for the ASK and LAQ-CP Physical Independence and Mobility domains were predicted well by children's movement, manual, and intellectual disability, and also, to some extent, by the presence of seizures or speech problems. LAQ-CP domains for Economic and Clinical Burden and Social Integration were not well explained by children's abilities and impairments. Family assessment, therefore, offers a useful method for measuring children's activities and participation; however, currently available instruments do not fully represent all the domains in the International Classification of Functioning, Disability and Health. Children's abilities only partially explain their activities and participation.
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Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL (2006). Reliability of the manual ability classification system for children with cerebral palsy.
Dev Med Child Neurol,
48(12), 950-953.
Abstract:
Reliability of the manual ability classification system for children with cerebral palsy.
The aim of this study was to determine the reliability of family and professional assessment of manual ability using the Manual Ability Classification System (MACS) for children with cerebral palsy (CP) in the UK. Families who were taking part in a study measuring the activities and participation of children with CP were invited to classify their child's manual ability using the MACS. Postal surveys were conducted with the families and health professionals nominated by the families. Perfect agreement was assessed as a percentage; chance-corrected agreement was measured using Cohen's kappa (kappa), and reliability was determined using the intraclass correlation coefficient (ICC). Families of 91/128 (71%) children responded to the survey (53 males, 38 females; mean age 9y 11mo [SD 1y 11mo], range 6-12y) out of whom 88 indicated a single MACS level. Seventy-two children (82%) were classified with spastic CP, 12 (14%) with dyskinesia, two (2%) with ataxia, and two (2%) were not classified. There were 21, 27, 11, 10, and 19 children who were classified by their families in Gross Motor Function Classification System Levels I to V respectively; 14, 30, 18, 13, and 13 children classified by their families in MACS levels I to V. The survey of health professionals generated 60/71 (85%) responses from physiotherapists, 55/58 (93%) responses from paediatricians, and 21/24 (88%) responses from occupational therapists. There was perfect agreement between families and professionals for more than 50% of children; the indices of chance-corrected agreement ranged from kappa=0.3 to 0.5, and the reliability coefficients ranged from ICC 0.7 to 0.9. Indices of agreement and reliability between families and professionals were equivalent to those between different professionals. The MACS, therefore, offers a valid and reliable method for communicating about the manual ability of children with CP. Families and professionals may not always agree precisely on a MACS level, particularly if children's performance of manual tasks varies in different environments.
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Morris C, Rosenbaum P (2006). The GMFCS does not produce a score.
Dev Med Child Neurol,
48(8).
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Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL (2006). Who best to make the assessment? Professionals' and families' classifications of gross motor function in cerebral palsy are highly consistent.
Arch Dis Child,
91(8), 675-679.
Abstract:
Who best to make the assessment? Professionals' and families' classifications of gross motor function in cerebral palsy are highly consistent.
AIM: to determine the reliability of family assessment for the Gross Motor Function Classification System (GMFCS) for children with cerebral palsy in the UK. METHODS: Families of a complete geographically defined population of children with cerebral palsy between 6 and 12 years old were identified from the 4Child epidemiological database. Postal surveys were conducted with the families and any of the child's health professionals that were nominated by the families. RESULTS: Families of 129/314 eligible children took part in the study (41%). The indices of agreement and reliability between families and professionals were also equivalent to those observed between the professionals (kappa = 0.5, ICC > or = 0.9). Reliability coefficients were higher when more of the professionals classified children using direct observation rather than only reviewing their clinical records. CONCLUSIONS: Despite excellent reliability, families and professionals did not always agree exactly on a child's GMFCS level. Classifications may differ due to children's varying performance in different environments, in which case families will almost certainly know their children's ability in a broader range of settings. The indices of reliability of family assessment for the GMFCS meet the recommended criteria for use with individuals and groups, indicating that the method is suitable for use in research studies and clinical practice.
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Morris C, Kurinczuk JJ, Fitzpatrick R (2005). Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review.
Child Care Health Dev,
31(4), 397-407.
Abstract:
Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review.
BACKGROUND: There is a need to measure children's 'activity performance and participation' as defined in the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (WHO ICF). The aim of this review is to identify instruments that are suitable for use in postal surveys with families of children with cerebral palsy. METHODS: We conducted a structured review of instruments that use child or family self-assessment of 'activity performance and participation'. The review involved a systematic search for instruments using multiple published sources. Appraisal of the instruments used the predefined criteria of appropriateness, validity, reliability, responsiveness, precision, interpretability, acceptability and feasibility. RESULTS: There are relatively few child or family assessed instruments appropriate for measuring children's activities and participation. Seven instruments were identified that could potentially be administered by mail. The Assessment of Life Habits for Children (LIFE-H) was the most appropriate instrument as assessed by its content but the reliability of child or family self-assessment is not known. If the LIFE-H were shown to be a reliable self-report measure then the LIFE-H would be the recommended choice. Currently, the Activities Scale for Kids and the condition-specific Lifestyle Assessment Questionnaire for cerebral palsy (LAQ-CP) provide the broadest description of what and how frequently children with cerebral palsy perform a range of activities and thereby indicate participation. The LAQ-CP also provides additional contextual information on the impact of any disability on the participation of the family unit. CONCLUSION: There remains much scope for developing valid and reliable self-assessed measures corresponding to the WHO ICF dimensions of activities and participation.
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Morris C (2005). The design, conduct and reporting of clinical trials in prosthetics and orthotics.
Prosthet Orthot Int,
29(1), 115-117.
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Morris C, Bartlett D (2004). Gross Motor Function Classification System: impact and utility.
Dev Med Child Neurol,
46(1), 60-65.
Abstract:
Gross Motor Function Classification System: impact and utility.
In summary, the GMFCS has had, and continues to have, a major effect on the health care of children with CP. The number of citations of the GMFCS has been increasing every year, and the classification system has had good uptake internationally and across the spectrum of health professionals for use in research design and clinical practice by providing a system for clearly communicating about children's gross motor function. The utility of diagnostic labels such as diplegia has been questioned. However, although by definition CP is a disorder of posture and movement, the movement disability is often only one of the neurodevelopmental problems for many children with CP. When a complete description of a child's clinical presentation is required we recommend that the GMFCS be used together with the Surveillance of Cerebral Palsy in Europe classification indicating the type and topography of movement impairment. When appropriate the clinical profile will similarly be enhanced with details of other impairments and disabilities such as epilepsy or sensory, learning, feeding, or emotional disturbance. The observations in this annotation are constrained by the amount of information in the public domain. Although these sources adequately represent the effect of the GMFCS on research design, they are less likely to inform us of how the GMFCS is being used in administration, clinical practice, or education. It is not yet clear whether information is being used for these purposes or in assisting with case load management, as intended by the developers. By its localized nature, such information might remain difficult to gauge. We would therefore be interested to hear from others who are using the system for these or any other purposes.
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Morris C, Galuppi BE, Rosenbaum PL (2004). Reliability of family report for the Gross Motor Function Classification System.
Dev Med Child Neurol,
46(7), 455-460.
Abstract:
Reliability of family report for the Gross Motor Function Classification System.
The aim of this study was to determine the reliability of family reports for the Gross Motor Function Classification System (GMFCS), a condition-specific discriminative measure of severity of movement disability for children with cerebral palsy (CP). We conducted a cross-sectional survey using a short questionnaire with families of children with CP for whom we already had ratings of GMFCS level made by a health professional. We assessed the potentially confounding effect of whether the family had discussed the GMFCS with a professional. Two hundred and one questionnaires were posted to families of which 97 (48%) were completed and returned. Mean age of the children (53 males, 40 females) was 9 years 5 months (SD 1 year 1 month), range 6 to 11 years. Children of the families who responded encompassed the spectrum of types and distribution of impairment and severity of movement disability. The intraclass correlation coefficient (ICC) of agreement between professionals and families who had discussed their child's GMFCS level with a health professional (n=35) was 0.97 (95% confidence interval [CI] 0.96 to 0.98); for those who had not (n=52) the ICC was 0.92 (95% CI 0.91 to 0.93); and for the whole sample (n=93) the ICC was 0.94 (95% CI 0.90 to 0.96). Stability between ratings made by health professionals for children when they were in the 4 to 6 year age band of the GMFCS and ratings made by families for the same children when they were in the 6 to 12 year age band (n=35) was ICC=0.96 (95% CI 0.95 to 0.97). The excellent agreement demonstrated in this study suggests that family reports of the GMFCS made by using our questionnaire provide a reliable method for measuring gross motor function in children between 6 and 12 years old. This might be more efficient for observational studies of large populations, experimental research, or community health administration than direct observation, particularly when professional assessment is not feasible.
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Morris C (2002). A review of the efficacy of lower-limb orthoses used for cerebral palsy.
Dev Med Child Neurol,
44(3), 205-211.
Author URL.
Morris C (2002). Orthotic Management of Children with Cerebral Palsy.
Journal of Prosthetics and Orthotics,
14(4), 150-158.
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Morris C, Newdick H, Johnson A (2002). Variations in the orthotic management of cerebral palsy.
Child Care Health Dev,
28(2), 139-147.
Abstract:
Variations in the orthotic management of cerebral palsy.
OBJECTIVE: Anecdotal reports that children with cerebral palsy were provided different orthoses in two adjacent UK health districts were investigated using an observational comparative case study. METHOD: the populations were compared using an epidemiological register of children with cerebral palsy, which confirmed that a comparable health service response could be expected. Merging data from the register with the orthotic patient database facilitated comparison of the orthoses prescribed in each district. A survey questionnaire was used to gather the perceptions of clinicians in both districts to understand how each team decides which orthosis to prescribe. RESULTS: There was considerable variation in the types of orthoses prescribed between districts, and particularly of ankle foot orthoses. Survey respondents from the same profession described having the same roles, although clinicians expressed different responsibilities for initiating and sanctioning orthotic prescriptions in their district programmes. The survey also suggested that most clinicians were uncertain when prescribing orthoses, and clinical practice was therefore largely determined by professional preference. CONCLUSION: Defining the spectrum of activity limitation in geographically defined populations would enhance health services research and assist in the development of trials using different interventions to reduce those limitations.
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