Individuals with lived experience of disability should participate in every stage of research

Dan, Bernard

doi:10.1111/dmcn.15438

Cited by 8 publications

(8 citation statements)

References 6 publications

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“…35 In 2010 a CP research priorities project was driven by a consumer voice, 36 and similar exercises including people with lived experience have been conducted more recently. 37,38 Families 6 and individuals with lived experience 'should be involved in every stage of research', 39 and it is heartening to report that over T A B L E 2 Data collected by at least two cerebral palsy register networks. | 775 CEREBRAL PALSY REGISTERS AROUND THE WORLD: A 60% of participating registers involve people with lived experience.…”

Section: Discussionmentioning

confidence: 99%

“…In 2010 a CP research priorities project was driven by a consumer voice, 36 and similar exercises including people with lived experience have been conducted more recently 37,38 . Families 6 and individuals with lived experience ‘should be involved in every stage of research’, 39 and it is heartening to report that over 60% of participating registers involve people with lived experience. The work of registers is further improved by collaboration with other stakeholders including health professionals (community and hospital‐based), Indigenous people, and policymakers.…”

Section: Discussionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

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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“…We acknowledge that our own measure of parental emotion reactions was a 5‐point scale. Further research in this area might engage people with lived experience more fully in every stage of the research 35 and, using standardized scales, investigate relationships between attributions and parental psychological adjustment, and grief and trauma symptoms.…”

Section: Discussionmentioning

confidence: 99%

Causation in cerebral palsy: Parental beliefs and associated emotions

Smyth

Reid

Paton

et al. 2023

Develop Med Child Neuro

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AimTo better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs.MethodWe surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these.ResultsAlthough 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events.InterpretationSubstantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP.

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“…To ensure value to those with lived experience -be it parents, caregivers, or those with a disability -research from its inception needs to include us as stakeholders. 5 To reiterate, published papers need to be written in a format that can be understood by all researchers, clinicians, and those with lived experience. We urge researchers to end their works with a plan for next steps, ideas to generate participation, or encouraging advocacy on our behalf.…”

mentioning

confidence: 99%

“…We are truly thankful for the new opportunities that DMCN has offered, but we can also see there is great work still to be done. To ensure value to those with lived experience – be it parents, caregivers, or those with a disability – research from its inception needs to include us as stakeholders 5 . To reiterate, published papers need to be written in a format that can be understood by all researchers, clinicians, and those with lived experience.…”

mentioning

confidence: 99%

How to make research accessible and meaningful for individuals with lived experience

Council¹

2023

Develop Med Child Neuro

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Individuals with lived experience of disability should participate in every stage of research

Cited by 8 publications

References 6 publications

Cerebral palsy registers around the world: A survey

Cerebral palsy registers around the world: A survey

Causation in cerebral palsy: Parental beliefs and associated emotions

How to make research accessible and meaningful for individuals with lived experience

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