Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

Headrick, Katie; Thornton, Marelle; Hogan, Amy; Denver, Belinda Deramore; Drake, Gabrielle; Wallen, Margaret

doi:10.1080/09638288.2022.2034992

Cited by 4 publications

(3 citation statements)

References 35 publications

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“…The advisory group suggested this may be because people with lived experience are used to 'making do' with inappropriate assessments, not because they do not need modification. Consumer engagement is fundamental to ensure knowledge translation [39]. The advisory group was instrumental in recommending procedures to ensure representation of the heterogenous population, while reducing participant research burden.…”

Section: Relevancementioning

confidence: 99%

Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification

Smith,

Gibson,

Russo

et al. 2024

Qual Life Res

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Purpose To firstly identify tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy (CP), and secondly identify suggestions to improve their relevance, comprehensiveness, comprehensibility and feasibility for the CP population. Improving assessment of the impact of pain on emotional functioning can enhance quality of life by improving access to interventions for pain-related physical disability, anxiety and depression. Methods Ethics approval was granted through the Women’s and Children’s Health Network Human Research Ethics Committee (2022/HRE00154). A mixed methods study with people with lived experience and clinicians, and guided by the Consensus-based Standards for Measurement Instruments (COSMIN), was undertaken. An online survey identified the highest rated tools for validation and/or modification for young people with CP and chronic pain. Focus groups and interviews investigated content validity and feasibility of the tools identified as highest rated. Results The Fear of Pain Questionnaire for Children-SF (FOPQ-C-SF) and Modified Brief Pain Inventory (mBPI) were the highest rated for pain coping and multidimensional assessment (respectively) from the online survey (n = 61) of eight tools presented. Focus group and interview data (n = 30), including 58 unique modification suggestions, were coded to six categories: accessibility, comprehensibility, feasibility, relevance, presentation and comprehensiveness. Conclusion Potential modifications have been identified to improve the appropriateness and feasibility of the FOPQ-C-SF and mBPI for children and young people with CP. Future research should implement and test these modifications, prioritising the involvement of people with lived experience to ensure their needs are met alongside clinicians.

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Section: Relevancementioning

confidence: 99%

Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification

Smith,

Gibson,

Russo

et al. 2024

Qual Life Res

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“…6 Involving people with lived experience is expected to improve research relevance and credibility. 7 Pragmatically, many funding schemes require evidence of consumer involvement in proposed research. 6 Funders and the research community are also shifting to focus on research impact, described as 'an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia'.…”

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confidence: 99%

“…Philosophically, the involvement of people with lived experience is vital—they are best placed to set the research agenda as they understand which research is likely to have the largest impact on their lives 6 . Involving people with lived experience is expected to improve research relevance and credibility 7 . Pragmatically, many funding schemes require evidence of consumer involvement in proposed research 6 .…”

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confidence: 99%

Cerebral palsy registers around the world: A survey

Goldsmith,

Smithers‐Sheedy,

Almasri

et al. 2023

Develop Med Child Neuro

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AimTo provide a description of cerebral palsy (CP) registers globally, identify which aim to report on CP epidemiology, and report similarities and differences across topics of importance for the sustainability and collaboration between registers.MethodRepresentatives of all known CP registers globally (n = 57) were invited to participate. The online survey included 68 questions across aims, methodologies, output/impact, and stakeholder involvement. Responses were analysed using descriptive statistics.ResultsForty‐five registers participated, including three register networks. Twenty were newly established or under development, including 12 in low‐ and middle‐income countries (LMICs). An epidemiological aim was reported by 91% of registers. Funding is received by 85% of registers, most often from not‐for‐profit organizations. CP definitions are comparable across registers. While the minimum data set of a register network is used by most registers, only 25% of identified items are collected by all three register networks. Ninety per cent of registers measure research activities/output, and 64% measure research impact. People with lived experience are involved in 62% of registers.InterpretationThere has been a recent surge in CP registers globally, particularly in LMICs, which will improve understanding of CP epidemiology. Ongoing efforts to address identified methodological differences are essential to validate comparison of results and support register collaboration.

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Participating together in CP-ACHIEVE: Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals

Kilgour,

Lu,

Kozelj

et al. 2024

Childhood

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The Australian Centre for Health, Independence, Economic participation and Value Enhanced care for adolescents and young adults with Cerebral Palsy (CP-ACHIEVE) is a Centre of Research Excellence (CRE), funded for 5-year by the National Health and Medical Research Council of Australia. The vision of CP-ACHIEVE is an Australia where people with cerebral palsy receive excellent healthcare throughout their lives and live in, and contribute to, supportive communities that welcome and enable their participation. CP-ACHIEVE began with the ethical commitment to bring together people with lived experience of cerebral palsy, researchers, and health professionals to develop and conduct research informed by, and relevant to, people with cerebral palsy and their allies. From inception, co-research and collaboration with (not ‘to’ or ‘about’) young people with cerebral palsy (10 to 30 years of age) and their families has been central to our work. In this paper, we describe the CP-ACHIEVE values, structure and strategy for this approach, and its implementation at each stage of the research process. We then provide an example of the strategy in action, using a qualitative exploration of CP-ACHIEVE’s Participation Theme team’s experiences of collaboration and involvement as co-researchers. Active participation in research for young people with lived experience of cerebral palsy and their families is a fundamental human right, based on their right to be active agents in decisions that affect them. In this paper we explore how our collaborative approach, and the integration of diverse views, has enhanced the relevance, quality, usefulness, and translation of our research. We also describe (i) the structural elements of our research group that have facilitated our work together, (ii) our challenges, and (iii) how the ownership of our research by people with cerebral palsy is driving future research directions and empowering involvement of people with lived experience beyond CP-ACHIEVE. We offer this knowledge and our experiences to assist other research teams in their journeys towards collaborative research alongside people with lived experience of disability.

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Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

Cited by 4 publications

References 35 publications

Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification

Examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy: stakeholder preference and recommendations for modification

Cerebral palsy registers around the world: A survey

Participating together in CP-ACHIEVE: Experiences, opportunities and reflections from a collaborative research team of people with lived experience of cerebral palsy and health care professionals

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