Journal articles
Martin-Kerry J, Higgins S, Knapp P, Liabo K, Young B (In Press). Engaging children, young people, parents and health professionals in interviews: using an interactive ranking exercise within the co-design of multimedia websites.
Journal of Child Health CareAbstract:
Engaging children, young people, parents and health professionals in interviews: using an interactive ranking exercise within the co-design of multimedia websites
When planning paediatric trials, it is important to consider how best to communicate with children and young people (CYP) so they understand what they are taking part in. It is also important to consider what information they need. Involving CYP as research participants leads to research that is more relevant although it can be difficult to engage CYP in qualitative research to improve trial materials due to the topic area. This paper describes how a visual ranking exercise within qualitative interviews acted as a helpful conduit to engaging discussions to inform a co-designed website with information for trial participants. Forty people participated in interviews during which the ranking exercise was used (11 CYP aged 8 -18 years, 14 parents, 15 professionals). We found the ranking exercise supported participant engagement and prevented them feeling that particular responses were expected. It also enabled participants to discuss their ranking (and decisions behind this) with other participants and the researcher. Co-design interviews with CYP that use interactive exercises such as ranking are likely to elicit richer data than those relying on traditional questioning techniques.
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Liabo K, Cockcroft E, Boddy K, Farmer L, Bortoli S, Britten N (In Press). Epistemic justice in public involvement and engagement: creating conditions for impact. Health Expectations
Irgens EL, Berglen G, Christoffersen T, Henninen AP, Hermansen R, Karlsen MRE, Kokkvoll AS, Liabo K, Møllersen S, Rugland G, et al (2023). Our health, our research. Identifying public health research priorities among children and youth in a multiethnic population: protocol for a community-based participatory health research priority survey.
BMJ Open,
13(7).
Abstract:
Our health, our research. Identifying public health research priorities among children and youth in a multiethnic population: protocol for a community-based participatory health research priority survey.
INTRODUCTION: Emphasis on public involvement (PI) in health research has increased in the last 20 years. However, there is limited literature on PI in planning and conducting population-based health research. This study aims to identify child and adolescent health research priorities among children and stakeholder groups in Northern Norway by inviting PI groups to collaborate with researchers to develop and conduct a research priority survey. METHODS AND ANALYSIS: This is a community-based participatory research project. The methods for research prioritisation are informed by those developed by the James Lind Alliance. In addition, the survey design and engagement plans are developed in extensive collaboration with child and youth stakeholder groups. Nine PI groups have met three times to develop an anonymous child and youth health research priority survey, as well as strategies for recruitment and dissemination of results. All 5th-10th grade pupils in the Finnmark region will be invited to participate in the survey, as well as caretakers and adults working for and with children and youth. The survey results will be analysed in collaboration with the PI groups, and research priorities checked with existing research literature. ETHICS AND DISSEMINATION: the study is registered and approved by the Data Protection Authorities at the Finnmark Hospital Trust and the Expert Committee for Sami Health Research. Descriptions of methods applied and the survey results will be published in popular and scientific publications.
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Author URL.
Røssvoll TB, Hanssen TA, Rosenvinge JH, Liabo K, Pettersen G (2023). Patient and Public Involvement in Occupational Therapy Health Research: a Scoping Review.
OTJR (Thorofare N J),
43(1), 119-126.
Abstract:
Patient and Public Involvement in Occupational Therapy Health Research: a Scoping Review.
UNLABELLED: Patient and public involvement (PPI) in research has the potential to improve research validity and relevance. OBJECTIVES: to explore how PPI has been carried out and how its impacts have been reported in occupational therapy (OT) health research. METHODOLOGY: Scoping review based on a search in four databases for OT research with descriptions of PPI, published between 2010 and 2020. RESULTS: Across the 17 included studies PPI was reported in all stages of research. Descriptions of how PPI was carried out varied across the studies, and details with respect to the kind of approach used were lacking. Positive impacts on research design, research ethics, public collaborators and researchers were reported, but only anecdotally. Reflections and challenges related to PPI were also addressed. IMPLICATIONS: in future studies, comprehensiveness and consistency is needed to document the diversity of how PPI is carried out in OT health research.
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Author URL.
Røssvoll TB, Rosenvinge JH, Liabo K, Hanssen TA, Pettersen G (2023). Patient and public involvement in health research from researchers' perspective.
Health ExpectationsAbstract:
Patient and public involvement in health research from researchers' perspective
AbstractBackgroundPatient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)‐trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT‐trained researchers.MethodSemi‐structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis.ResultsProfessional background and clinical experience from person‐centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital.ConclusionCollaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations.Patient or Public ContributionThree public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.
Abstract.
Thomas C, Cockcroft E, Jenkins G, Liabo K (2023). Working with children and young people in research: Supportive practices and pathways to impact.
Journal of Child Health Care, 136749352311714-136749352311714.
Abstract:
Working with children and young people in research: Supportive practices and pathways to impact
Children and young people have much to contribute to the design and delivery of health research and care. Nevertheless, there are multiple barriers to meaningful and impactful involvement of children and young people. This narrative review synthesised existing literature on the involvement of children and young people as partners in health research. Authors screened electronic databases and reference lists to identify relevant studies. Data were extracted on how involvement was described, what young people contributed to, and the impact of their involvement. The review identified 15 reports; these reported researcher observations and findings from focus group discussions and questionnaires about the involvement. Impacts recorded in these studies included influence on research; outputs from involvement activities; shifts in researchers’ attitudes; a sense of achievement in young people; and fulfilling relationships. These impacts were associated with principles being followed: building relationships over time to allow for unexpected involvement in the research, flexibility so young people could contribute in ways that work for them, and training. Methods adapted to be youth-appropriate such as visual aids and icebreaker games also enabled impact. Impactful involvement relies on processes that respond to young people’s preferences for engagement and activities that support them to share their views.
Abstract.
Lang I, King A, Jenkins G, Boddy K, Khan Z, Liabo K (2022). How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors.
BMJ Open,
12(5).
Abstract:
How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors.
OBJECTIVES: Patient and public involvement (PPI) in health research is required by some funders and publications but we know little about how common it is. In this study we estimated the frequency of PPI inclusion in health research papers and analysed how it varied in relation to research topics, methods, funding sources and geographical regions. DESIGN: Cross-sectional. METHODS: Our sample consisted of 3000 research papers published in 2020 in a general health-research journal (BMJ Open) that requires a statement on whether studies included PPI. We classified each paper as 'included PPI' or 'did not include PPI' and analysed the association of this classification with location (country or region of the world), methods used, research topic (journal section) and funding source. We used adjusted regression models to estimate incident rate ratios of PPI inclusion in relation to these differences. RESULTS: 618 (20.6%) of the papers in our sample included PPI. The proportion of papers including PPI varied in relation to location (from 44.5% (95% CI 40.8% to 48.5%) in papers from the UK to 3.4% (95% CI 1.5% to 5.3%) in papers from China), method (from 38.6% (95% CI 27.1% to 50.1%) of mixed-methods papers to 5.3% (95% CI -1.9% to 12.5%) of simulation papers), topic (from 36.9% (95% CI 29.1% to 44.7%) of papers on mental health to 3.4% (95% CI -1.3% to 8.2%) of papers on medical education and training, and funding source (from 57.2% (95% CI 51.8% to 62.6%) in papers that received funding from the UK's National Institute for Health Research to 3.4% (95% CI 0.7% to 6.0%) in papers that received funding from a Chinese state funder). CONCLUSIONS: Most research papers in our sample did not include PPI and PPI inclusion varied widely in relation to location, methods, topic and funding source.
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Forbes C, Morley N, Liabo K, Bjornstad G, Boult H, Ahmed S, Ciesla K, Vafai Y, Bridges S, Logan S, et al (2022). Prioritising child health and maternity evidence-based interventions or service models: a stakeholder-driven process.
BMC Health Services Research,
22(1).
Abstract:
Prioritising child health and maternity evidence-based interventions or service models: a stakeholder-driven process
Abstract
. Aim
. A UK programme, led by the National Institute for Health Research (NIHR). (https://www.nihr.ac.uk) and coordinated by Applied Research Collaborations (ARC), (https://www.nihr.ac.uk/explore-nihr/support/collaborating-in-applied-health-research.htm) aimed to identify and select evidence-based, implementation-ready service innovations for evaluation. The programme focused on seven areas of health provision. We report on a prioritisation process designed to identify and assess innovations in one of these areas: child and maternal health (CH&M).
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. Methods
. We developed a three-stage, online, stakeholder driven process to 1) identify, 2) assess and prioritise and 3) select evidence-based interventions or service models, using crowdsourcing to identify projects and the APEASE criteria to assess and select projects. A brief evidence review was conducted for all initial suggestions to identify those with the largest evidence-base to take forward for ranking by stakeholders. Stakeholder workshops considered and ranked these suggestions using the APEASE criteria. We then conducted in-depth evidence reviews for the highest ranked suggestions. The Project Management Group and Advisory Board used these reviews and the APEASE criteria to select the final projects.
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. Results
. We received 32 initial suggestions from a range of clinicians, practitioners and researchers. Fourteen of the most evidence-based suggestions were considered and ranked at four themed stakeholder workshops. Nine suggestions were ranked for further in-depth evidence review and a final four projects were selected for implementation evaluation using the APEASE criteria. These were: 1. Maternal Mental Health Services Multidisciplinary Teams 2. Early years tooth brushing programme 3. Trauma-focused CBT for young people in care and 4. Independent Domestic Violence Advisors in maternity settings. Feedback from participants suggested that having public representatives participating in all stakeholder meetings, rather than being consulted separately, focused discussions clearly on patient benefit rather than research aims.
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. Conclusions
. The stakeholder-driven process achieved its aim of identifying, prioritising and assessing and selecting, evidence-based projects for wider implementation and evaluation. The concurrent process could be adapted by other researchers or policy makers.
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Abstract.
Allen M, James C, Frost J, Liabo K, Pearn K, Monks T, Everson R, Stein K, James M (2022). Use of Clinical Pathway Simulation and Machine Learning to Identify Key Levers for Maximizing the Benefit of Intravenous Thrombolysis in Acute Stroke.
Stroke,
53(9), 2758-2767.
Abstract:
Use of Clinical Pathway Simulation and Machine Learning to Identify Key Levers for Maximizing the Benefit of Intravenous Thrombolysis in Acute Stroke.
BACKGROUND: Expert opinion is that about 20% of emergency stroke patients should receive thrombolysis. Currently, 11% to 12% of patients in England and Wales receive thrombolysis, ranging from 2% to 24% between hospitals. The aim of this study was to assess how much variation is due to differences in local patient populations, and how much is due to differences in clinical decision-making and stroke pathway performance, while estimating a realistic target thrombolysis use. METHODS: Anonymised data for 246 676 emergency stroke admissions to 132 acute hospitals in England and Wales between 2016 and 2018 was obtained from the Sentinel Stroke National Audit Programme data. We used machine learning to learn decisions on who to give thrombolysis to at each hospital. We used clinical pathway simulation to model effects of changing pathway performance. Qualitative research was used to assess clinician attitudes to these methods. Three changes were modeled: (1) arrival-to-treatment in 30 minutes, (2) proportion of patients with determined stroke onset times set to at least the national upper quartile, (3) thrombolysis decisions made based on majority vote of a benchmark set of hospitals. RESULTS: of the modeled changes, any single change was predicted to increase national thrombolysis use from 11.6% to between 12.3% to 14.5% (clinical decision-making having the most effect). Combined, these changes would be expected to increase thrombolysis to 18.3%, but there would still be significant variation between hospitals depending on local patient population. Clinicians engaged well with the modeling, but those from hospitals with lower thrombolysis use were most cautious about the methods. CONCLUSIONS: Machine learning and clinical pathway simulation may be applied at scale to national stroke audit data, allowing extended use and analysis of audit data. Stroke thrombolysis rates of at least 18% look achievable in England and Wales, but each hospital should have its own target.
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Author URL.
Allen M, James C, Frost J, Liabo K, Pearn K, Monks T, Zhelev Z, Logan S, Everson R, James M, et al (2022). Using simulation and machine learning to maximise the benefit of intravenous thrombolysis in acute stroke in England and Wales: the SAMueL modelling and qualitative study.
Health and Social Care Delivery Research,
10(31), 1-148.
Abstract:
Using simulation and machine learning to maximise the benefit of intravenous thrombolysis in acute stroke in England and Wales: the SAMueL modelling and qualitative study
BackgroundStroke is a common cause of adult disability. Expert opinion is that about 20% of patients should receive thrombolysis to break up a clot causing the stroke. Currently, 11–12% of patients in England and Wales receive this treatment, ranging between 2% and 24% between hospitals.ObjectivesWe sought to enhance the national stroke audit by providing further analysis of the key sources of inter-hospital variation to determine how a target of 20% of stroke patients receiving thrombolysis may be reached.DesignWe modelled three aspects of the thrombolysis pathway, using machine learning and clinical pathway simulation. In addition, the project had a qualitative research arm, with the objective of understanding clinicians’ attitudes to use of modelling and machine learning applied to the national stroke audit.Participants and data sourceAnonymised data were collected for 246,676 emergency stroke admissions to acute stroke teams in England and Wales between 2016 and 2018, obtained from the Sentinel Stroke National Audit Programme.ResultsUse of thrombolysis could be predicted with 85% accuracy for those patients with a chance of receiving thrombolysis (i.e. those arriving within 4 hours of stroke onset). Machine learning models allowed prediction of likely treatment choice for each patient at all hospitals. A clinical pathway simulation predicted hospital thrombolysis use with an average absolute error of 0.5 percentage points. We found that about half of the inter-hospital variation in thrombolysis use came from differences in local patient populations, and half from in-hospital processes and decision-making. Three changes were applied to all hospitals in the model: (1) arrival to treatment in 30 minutes, (2) proportion of patients with determined stroke onset times set to at least the national upper quartile and (3) thrombolysis decisions made based on majority vote of a benchmark set of 30 hospitals. Any single change alone was predicted to increase national thrombolysis use from 11.6% to between 12.3% and 14.5% (with clinical decision-making having the most effect). Combined, these changes would be expected to increase thrombolysis to 18.3% (and to double the clinical benefit of thrombolysis, as speed increases also improve clinical benefit independently of the proportion of patients receiving thrombolysis); however, there would still be significant variation between hospitals depending on local patient population. For each hospital, the effect of each change could be predicted alone or in combination. Qualitative research with 19 clinicians showed that engagement with, and trust in, the model was greatest in physicians from units with higher thrombolysis rates. Physicians also wanted to see a machine learning model predicting outcome with probability of adverse effect of thrombolysis to counter a fear that driving thrombolysis use up may cause more harm than good.LimitationsModels may be built using data available in the Sentinel Stroke National Audit Programme only. Not all factors affecting use of thrombolysis are contained in Sentinel Stroke National Audit Programme data and the model, therefore, provides information on patterns of thrombolysis use in hospitals, but is not suitable for, or intended as, a decision aid to thrombolysis.ConclusionsMachine learning and clinical pathway simulation may be applied at scale to national audit data, allowing extended use and analysis of audit data. Stroke thrombolysis rates of at least 18% look achievable in England and Wales, but each hospital should have its own target.Future workFuture studies should extend machine learning modelling to predict the patient-level outcome and probability of adverse effects of thrombolysis, and apply co-production techniques, with clinicians and other stakeholders, to communicate model outputs.FundingThis project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full inHealth and Social Care Delivery Research; Vol. 10, No. 31. See the NIHR Journals Library website for further project information.
Abstract.
Wilkinson K, Day J, Thompson-Coon J, Goodwin V, Liabo K, Coxon G, Cox G, Marriott C, Lang IA (2021). A realist evaluation of a collaborative model to support research co-production in long-term care settings in England: the ExCHANGE protocol.
Res Involv Engagem,
7(1).
Abstract:
A realist evaluation of a collaborative model to support research co-production in long-term care settings in England: the ExCHANGE protocol.
BACKGROUND: Collaborative working between academic institutions and those who provide health and social care has been identified as integral in order to produce acceptable, relevant, and timely research, and for outputs to be useful and practical to implement. The ExCHANGE Collaboration aims to bring together researchers and people working, living in and visiting care homes to build capacity, share and mobilise knowledge, and identify key areas for future research. This paper describes an embedded, formative, realist and theory-driven evaluation which aims to gather information about how successful the ExCHANGE Collaboration is perceived to be in achieving its aims. An existing realist programme theory from the literature - Closer Collaboration - will be supplemented by two substantive theories: Co-production and Knowledge Brokering. This will result in an initial programme theory which will be tested by this formative evaluation to refine understanding of how the ExCHANGE Collaboration works. METHODS: the evaluation will employ mixed qualitative methods, including: analysis of documents such as feedback forms, Knowledge Broker journal/diary, event attendance records, risk and issues logs and other relevant paperwork gathered as part of project delivery; observations of events/activities; and interviews with care home providers and staff, care home residents, residents' family members, and researchers who are involved in the project (both project design/delivery, and also attendance or involvement in project activities/events). Framework Analysis will be used to interpret the data collected; analysis will be strategic, by focusing on particular key areas of importance in the developing theory of how the ExCHANGE Collaboration might achieve change. RESULTS: the results of this study are expected to be published in 2022. DISCUSSION: This evaluation will investigate how successful the ExCHANGE Collaboration is perceived to be in achieving its aims, in what way, in which contexts, and how this may differ for those involved. It will do this by testing an initial programme theory about how the collaboration works, for whom, under which circumstances, and in what way. Findings will be shared through written publication, an end of project learning event for those involved/interested in the project, and a lay summary to be made publically available.
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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.
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Abstract.
Staley K, Cockcroft E, Shelly A, Liabo K (2019). 'What can I do that will most help researchers?' a different approach to training the public at the start of their involvement in research.
Res Involv Engagem,
5Abstract:
'What can I do that will most help researchers?' a different approach to training the public at the start of their involvement in research.
For patients and the public to work collaboratively with researchers, they need support and opportunities to engage in learning that builds on their skills and grows their confidence. In this article, we argue for a different approach to this learning, which starts with the expertise patients/ the public arrive with, and helps them identify and develop the soft skills required to influence researchers effectively. Much of the current training for patients and the public focuses on addressing the gaps in their knowledge and awareness about how research works and how public involvement adds value. Our training complements this by exploring the concept of 'experiential knowledge' in more depth. Patients and the public possess experiential knowledge (knowledge gained through lived experience) that researchers may not have. In the training we explore the nature of this expertise and other skills that patients/ the public bring, as well as how to identify who has the most relevant experiential knowledge in any given situation, and how best to share experiential knowledge to benefit researchers and maximise the impact of involvement. We co-produced this training with a patient member of the project team, and through feedback from patients and carers in an initial pilot. Our approach adds another dimension to preparing people for involvement and in particular for taking part in conversations with researchers that support mutual learning. We suggest this approach should be supported by separate, mirror training for researchers, that also develops their soft skills in preparation for learning from involvement.
Abstract.
Author URL.
Liabo K, Boddy K, Burchmore H, Cockcroft E, Britten N (2019). Clarifying the roles of patients in research.
Br J Sports Med,
53(20).
Author URL.
Liabo K, Roberts H (2019). Coproduction and coproducing research with children and their parents.
Arch Dis Child,
104(12), 1134-1137.
Author URL.
Cockcroft EJ, Britten N, Long L, Liabo K (2019). How is knowledge shared in Public involvement? a qualitative study of involvement in a health technology assessment.
Health Expectations,
23(2), 348-357.
Abstract:
How is knowledge shared in Public involvement? a qualitative study of involvement in a health technology assessment
AbstractBackgroundPublic involvement in research is seen as a quality marker by funders. To understand the process and impact of involvement, more in‐depth studies are needed on how members of the public contribute in meetings with researchers.ObjectivesThis study aimed to observe and reflect on what is said by public advisers in involvement. We wanted to understand (a) what knowledge and experience is shared during research meetings, and (b) how this knowledge is shared with researchers.MethodsData were collected in November 2016 as part of the public involvement in a health technology assessment of lung cancer screening using low‐dose computed tomography. Three meetings were audio recorded and observed with the purpose of understanding how members of the public contributed during the meetings. Audio recordings were transcribed verbatim and data analysed using a thematic approach, with the coding framework developed inductively. We also included reflections from a community drop‐in session.ResultsMembers of the public brought three different ‘sources’ of knowledge and experience to meetings with researchers: direct lived personal experience; learnt knowledge; and the experience and values of others. The data suggest that group settings allow for dynamic discussions and sharing of different types of knowledge.ConclusionGroup‐based involvement meetings allow for the synergistic combination of individual knowledge and experience. This gives researchers a broader understanding of the topic, which can be the vehicle for patient impact on the research. A combination of group meeting and community drop‐in can enable more varied input into research planning and conduct.
Abstract.
Bakland M, Rosenvinge JH, Wynn R, Sundgot-Borgen J, Fostervold Mathisen T, Liabo K, Hanssen TA, Pettersen G (2019). Patients' views on a new treatment for Bulimia nervosa and binge eating disorder combining physical exercise and dietary therapy (the PED-t). A qualitative study.
Eat Disord,
27(6), 503-520.
Abstract:
Patients' views on a new treatment for Bulimia nervosa and binge eating disorder combining physical exercise and dietary therapy (the PED-t). A qualitative study.
A new group based treatment for patients with bulimia nervosa (BN) and binge eating disorder (BED), combining guided Physical Exercise and Dietary therapy (PED-t), has shown the capacity to alleviate BN and BED symptoms. The PED-t is run by therapists with a professional background in sport sciences and nutrition, which in many clinical settings is an uncommon group of professionals. The symptom reduction effects using the PED-t need validation from patients who have been given this kind of treatment, as negative experiences may impinge further clinical implementation. To explore such experiences, semistructural interviews were conducted with 15 participants. The interviews were transcribed and analyzed using a systematic text condensation approach. Overall, patients experienced the format and content of the PED-t as beneficial and as providing tools to manage BN- and BED symptoms. The patients' experiences of therapist credibility was enhanced by their appreciation of the therapists' professional background. Finally, some treatment modifications were suggested. Overall, the PED-t may thus be offered to patients with BN and BED, by a new set of professionals, and in uncommon settings. This possibility calls for future effectiveness studies integrating both parametric and experiential data.
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Anonymous Members of the Peninsula Public Involvement Group, Liabo K, O'Dwyer S (2019). Research Commentary: a Carer's Roadmap for Research, Practice, and Policy on Suicide, Homicide, and Self-Harm.
Behav Sci (Basel),
9(5).
Abstract:
Research Commentary: a Carer's Roadmap for Research, Practice, and Policy on Suicide, Homicide, and Self-Harm.
Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.
Abstract.
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Roberts H, Liabo K (2019). Research beyond the hospital walls.
Arch Dis Child,
104(4), 313-315.
Author URL.
Roberts HM, Liabo K (2019). Research with children and young people: not on them. What can we learn from the non-clinical research?.
Arch Dis Child,
104(10), 936-937.
Author URL.
Bradby H, Liabo K, Ingold A, Roberts H (2019). Visibility, resilience, vulnerability in young migrants.
Health (London),
23(5), 533-550.
Abstract:
Visibility, resilience, vulnerability in young migrants.
Young unaccompanied asylum seekers have been portrayed as vulnerable, resilient or both. Those granted residency in Europe are offered support by health and social care systems, but once they leave the care system to make independent lives, what part can these services play? Our review of research with migrants who have been in care in Sweden and the United Kingdom found evidence of unmet need, but little research describing their own views of services. The limited published evidence, supplemented by interviews with care leavers in a UK inner city, suggests that in defining health needs, young people emphasise housing, education, employment and friendship over clinical or preventative services. Some felt well supported while others described feeling vulnerable, anxious, angry or sad. These experiences, if linked with the insensitivity of even one professional, could lower young people's expectations of healthcare to the extent that they avoided contact with service providers. In supporting young migrants' resilience to meet everyday challenges, friendly support from peers, carers and professionals was important. They needed determined advocacy at key moments. The different challenges for the Swedish and UK health and welfare systems along with the resilience/vulnerability trajectory are described.
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Liabo K, Boddy K, Burchmore H, Cockcroft E, Britten N (2018). Clarifying the roles of patients in research.
BMJ,
361 Author URL.
Roberts H, Ingold A, Liabo K, Manzotti G, Reeves D, Bradby H (2018). Moving on: Transitions out of care for young people with learning disabilities in England and Sweden.
BRITISH JOURNAL OF LEARNING DISABILITIES,
46(1), 54-63.
Author URL.
Liabo K, Ingold A, Roberts H (2017). Co-production with “vulnerable” groups: Balancing protection and participation. Health Science Reports, 1(3), e19-e19.
Stansfield C, Liabo K (2017). Identifying Social Care Research Literature: Case Studies from Guideline Development.
Evidence Based Library and Information Practice,
12(3), 114-131.
Abstract:
Identifying Social Care Research Literature: Case Studies from Guideline Development
Abstract

Objective – Systematic searching is central to guideline development, yet guidelines in social care present a challenge to systematic searching because they exist within a highly complex policy and service environment. The objective of this study was to highlight challenges and inform practice on identifying social care research literature, drawing on experiences from guideline development in social care. 

Methods – the researchers reflected on the approaches to searching for research evidence to inform three guidelines. They evaluated the utility of major topic-focused bibliographic database sources through a) determining the yield of citations from the search strategies for two guidelines and b) identifying which databases contain the citations for three guidelines. The researchers also considered the proportion of different study types and their presence in certain databases. 

Results – There were variations in the ability of the search terms to capture the studies from individual databases, even with low-precision searches. These were mitigated by searching a combination of databases and other resources that were specific to individual topics. A combination of eight databases was important for finding literature for the included topics. Multiple database searching also mitigates the currency of content, topic and study design focus, and consistency of indexing within individual databases. 

Conclusion – Systematic searching for research evidence in social care requires considerable thought and development so that the search is fit for the particular purpose of supporting guidelines. This study highlights key challenges and reveals trends when utilising some commonly used databases.
Abstract.
Liabo K, McKenna C, Ingold A, Roberts H (2017). Leaving foster or residential care: a participatory study of care leavers' experiences of health and social care transitions.
Child Care Health Dev,
43(2), 182-191.
Abstract:
Leaving foster or residential care: a participatory study of care leavers' experiences of health and social care transitions.
BACKGROUND: Young people in residential or foster care experience multiple transitions around their 18th birthday without the long term and consistent support from their family of origin that most of their peers can expect. We report a mixed methods qualitative study of transitions across health and social care services for children leaving care, providing narratives of what young people described as positive, and what they and professionals think might be improved. METHODS: Data were collected in participatory meetings and individual interviews between young people and researchers (n = 24) and individual interviews with practitioners (n = 11). In addition to discussion and interview techniques, we used pictorial and other participatory methods. Interviews were coded by three members of the team and differences resolved with a fourth. Our analysis draws on thematic and framework approaches. RESULTS: Health was rarely at the top of any young person's agenda, although gaps in health care and exceptional care were both described. Housing, financial support and education took priority. Young people and professionals alike emphasized the importance of workers prepared to go the extra mile; of young people being able to contact professionals; and professionals being able to contact one another. CONCLUSIONS: Policy and practice aspirations for care leavers recommend gradual change but transfer rather than transition continues to be described by care leavers. Our data support the need for transition as a long-term process, with children and young people having early opportunities to prepare for citizenship.
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Roberts HM, Bradby H, Ingold A, Manzotti G, Reeves D, Liabo K (2017). Moving on: Multiple Transitions of Unaccompanied Child Migrants Leaving Care in England and Sweden. International Journal of Social Science Studies, 5(9).
Cockcroft E, Long L, Hyde C, Liabo K (2017). OP35 Involving Members of the Public in a National Screening Programme Health Technology Assessment. International Journal of Technology Assessment in Health Care, 33(S1), 16-16.
Liabo K (2016). Care leavers’ involvement in research: an ethnographic case study on impact.
Qualitative Social Work: research and practice,
ForthcomingAbstract:
Care leavers’ involvement in research: an ethnographic case study on impact
INTRODUCTION: Reporting data from a case study of a collaborative systematic review, this paper discusses the impact service user involvement might have on research, and how research might benefit from this. METHODS: This was a qualitative case study. The researcher analysed process data on the collaboration in the form of meeting transcripts and minutes, reflective interviews and the researchers’ own field diary. The review was also compared with two systematic reviews on a similar topic, using the AMSTAR checklist. RESULTS: the young people had influence at all stages of the review, but most importantly shifted its focus from healthcare to education, emphasising education as an important determinant of health. CONCLUSION: Young people involved in this review influenced the researcher’s reviewing as well as the review, which shows that involving service users in research is important in order to reduce researcher bias in social care research.
Abstract.
Singh S, Anderson B, Liabo K, Ganeshamoorthy T (2016). Supporting young people in their transition to adults' services: summary of NICE guidance. BMJ: British Medical Journal, 353, i2225-i2225.
Oliver S, Liabo K, Stewart R, Rees R (2015). Public involvement in research: making sense of the diversity.
J Health Serv Res Policy,
20(1), 45-51.
Abstract:
Public involvement in research: making sense of the diversity.
This paper presents a coherent framework for designing and evaluating public involvement in research by drawing on an extensive literature and the authors' experience. The framework consists of three key interrelated dimensions: the drivers for involvement; the processes for involvement and the impact of involvement. The pivotal point in this framework is the opportunity for researchers and others to exchange ideas. This opportunity results from the processes which bring them together and which support their debates and decisions. It is also the point at which research that is in the public interest is open to public influence and the point at which the interaction can also influence anyone directly involved. Judicious choice of methods for bringing people together, and supporting their debate and decisions, depends upon the drivers of those involved; these vary with their characteristics, particularly their degree of enthusiasm and experience, and their motivation.
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Liabo K (2014). Health activism: foundations and strategies.
CRITICAL PUBLIC HEALTH,
24(1), 104-105.
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Roberts H, Petticrew M, Liabo K, Macintyre S (2012). 'The Anglo-Saxon disease': a pilot study of the barriers to and facilitators of the use of randomised controlled trials of social programmes in an international context.
J Epidemiol Community Health,
66(11), 1025-1029.
Abstract:
'The Anglo-Saxon disease': a pilot study of the barriers to and facilitators of the use of randomised controlled trials of social programmes in an international context.
BACKGROUND: There appears to be considerable variation between different national jurisdictions and between different sectors of public policy in the use of evidence and particularly the use of randomised controlled trials (RCTs) to evaluate non-healthcare sector programmes. METHODS: As part of a wider study attempting to identify RCTs of public policy sector programmes and the reasons for variation between countries and sectors in their use, we carried out a pilot study which interviewed 10 policy makers and researchers in six countries to elicit views on barriers to and facilitators of the use of RCTs for social programmes. RESULTS: While in common with earlier studies, those interviewed expressed a need for unambiguous findings, timely results and significant effect sizes, users could, in fact, be ambivalent about robust methods and robust answers about what works, does not work or makes no difference, particularly where investment or a policy announcement was planned. Different national and policy sector cultures varied in their use of and support for RCTs. CONCLUSIONS: in order to maximise the use of robust evaluations of public programmes across the world it would be useful to examine, systematically, cross-national and cross-sectoral variations in the use of different methods including RCTs and barriers to and facilitators of their use. Sound research methods, whatever their scientific value, are no guarantee that findings will be useful or used. 'Stories' have been shown to influence policy; those advocating the use of RCTs may need to provide convincing narratives to avoid repetition about their value.
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Liabo K, Gray K, Mulcahy D (2012). A systematic review of interventions to support looked-after children in school. Child & Family Social Work, 18(3), 341-353.
Stewart R, Liabo K (2012). Involvement in research without compromising research quality.
J Health Serv Res Policy,
17(4), 248-251.
Abstract:
Involvement in research without compromising research quality.
Health research funders in the UK now ask applicants to state how their research will involve patients and members of the public. Such involvement can help with questions that researchers repeatedly face: about improving trial recruitment, response rates and follow-up. Patient and Public Involvement (PPI) in research is usually presented in the form of a ladder, from a low rung where studies are led by researchers with no patient involvement, to a high rung where studies are patient-led. This hierarchy does not sit well with many clinicians and academics whose expertise appears to have been downgraded. This article argues that research quality and relevance are optimised when patient expertise is integrated with researchers' and policy-makers' expertise, and each role acknowledged and valued, illustrated by an alternative model for PPI which places research and expertise at the centre of the involvement enterprise.
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Oliver S, Uhm, Liabo, Stewart, Rees (2012). Patient and public perspectives shaping scientific and medical research: panels for data, discussions, and decisions. Patient Intelligence, 1-1.
Stevens M, Liabo K, Witherspoon S, Roberts H (2009). What do practitioners want from research, what do funders fund and what needs to be done to know more about what works in the new world of children’s services?.
Evidence & Policy,
5(3), 281-294.
Abstract:
What do practitioners want from research, what do funders fund and what needs to be done to know more about what works in the new world of children’s services?
This paper is intended as a contribution to the debate on the place of research in children’s services from a funder of social research and three researchers, two of whom spent (between them) 12 years in an organisation delivering services to children and young people. We draw on two studies, the first identifying the questions to which practitioners in social care wanted answers; the second describing the degree of ‘fit’ between funded research and practitioners’ questions. These inform a discussion of the kinds of research and research infrastructure needed to support high-quality social care services for children.
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Stevens M, Liabo K, Roberts H (2007). A review of the research priorities of practitioners working with children in social care. Child & Family Social Work, 12(4), 295-305.
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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Liabo K (2006). Outcomes for Children and Youth with Emotional and Behavioral Disorders and their Families: Programs and Evaluation Best Practices (2nd edition). Journal of Children's Services, 1(2), 70-71.
Gomersall A, Liabo K (2005). Sources and Resources. Evidence & Policy, 1(2), 269-285.
Stevens M, Liabo K, Frost S, Roberts H (2005). Using research in practice: a research information service for social care practitioners. Child <html_ent glyph="@amp;" ascii="&"/> Family Social Work, 10(1), 67-75.
Liabo K (2005). What works for children and what works in research implementation? Experiences from a research and development project in the United Kingdom. Social Policy Journal of New Zealand: te puna whakaaro, Issue 24, 185-198.
Curtis K, Roberts H, Copperman J, Downie A, Liabo K (2004). 'How come I don't get asked no questions?' Researching 'hard to reach' children and teenagers. Child <html_ent glyph="@amp;" ascii="&"/> Family Social Work, 9(2), 167-175.
Liabo K (2004). Children at work: Health and safety risks.
HEALTH RISK & SOCIETY,
6(1), 97-98.
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Curtis K, Liabo K, Roberts H, Barker M (2004). Consulted but not heard: a qualitative study of young people's views of their local health service.
Health Expect,
7(2), 149-156.
Abstract:
Consulted but not heard: a qualitative study of young people's views of their local health service.
OBJECTIVES: the objective of this study was to identify what children and young people in a health district in a large urban area experience as positive--and not so positive--about their local health services, in the light of a growing expectation that users play a more central role in the design and delivery of services. DESIGN: a qualitative study incorporating a range of methods, including interviews, play techniques and a website. SETTING: Schools, nurseries, community groups, in- and outpatient settings in an inner London health authority. PARTICIPANTS: Young people aged between 4 and 19 years, from community (n = 92) and clinical (n = 57) settings. This included 'hard-to-reach' children, including those leaving care, those in touch with the criminal justice system, asylum seekers, and those with learning disabilities. RESULTS: Alongside planning and environment issues, young people particularly emphasized the impact of communication and relationships with staff on their experience of health services. DISCUSSION AND CONCLUSIONS: Using a range of flexible and age-appropriate techniques, young people, even those as young as 4 or 5, are able to comment helpfully on their experiences of service provision. What children had to say is revealing but not astonishing to those working in the National Health Service (NHS). Clinicians and managers, to whom our findings were fed back, made this clear. If we have known for so long that the issues raised here are problems, why are we so poor at acting on this knowledge? the authors suggest four explanations.
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Brocklehurst N, Liabo K (2004). Evidence nuggets: promoting evidence-based practice. Community Practitioner, 371-375.
Roberts H, Liabo K, Lucas P, DuBois D, Sheldon TA (2004). Mentoring to reduce antisocial behaviour in childhood.
BMJ,
328(7438), 512-514.
Abstract:
Mentoring to reduce antisocial behaviour in childhood.
The effects of social interventions need to be examined in real life situations as well as studies
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Roberts H, Curtis K, Liabo K, Rowland D, DiGuiseppi C, Roberts I (2004). Putting public health evidence into practice: increasing the prevalence of working smoke alarms in disadvantaged inner city housing.
J Epidemiol Community Health,
58(4), 280-285.
Abstract:
Putting public health evidence into practice: increasing the prevalence of working smoke alarms in disadvantaged inner city housing.
STUDY OBJECTIVES: the UK government recommends that local authorities install battery operated smoke alarms to prevent fire related injury. However, a randomised controlled trial of smoke alarm installation in local authority housing found a low level of working alarms at follow up. Qualitative work, which accompanied the trial explored barriers and levers to the use of this public health intervention. DESIGN: Semi-structured group and individual interviews were conducted with a sample of the adult participants in a randomised controlled trial of free smoke alarm installation. Group interviews and "draw and write" exercises were conducted with children at a local primary school. PARTICIPANTS: a sample of trial participants and primary school children in the trial neighbourhood. SETTING: an inner city housing estate in central London. MAIN RESULTS: the main barrier to smoke alarm use was the distress caused by false alarms. Although trial participants considered themselves to be at high risk for fires and would recommend smoke alarms to others, respondents' reports on the distress caused by false alarms suggest that people balance immediate and longer term risks to their health and wellbeing when they disable alarms. CONCLUSIONS: This study identified some of the reasons for the low level of functioning smoke alarms, and problems experienced with alarms. The results have implications for the implementation of this public health intervention. The effectiveness of smoke alarm installation could be improved if alarm manufacturers and those responsible for implementation programmes considered ways of tackling the issues raised in this study.
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Liabo K, Lucas P, Roberts H (2003). Can traffic calming measures achieve the Children's Fund objective of reducing inequalities in child health?.
Arch Dis Child,
88(3), 235-236.
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Lucas P, Liabo K, Roberts H (2002). Do behavioural treatments for sleep disorders in children with Down's syndrome work?.
Arch Dis Child,
87(5), 413-414.
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