Valuing experiential knowledge to complement professional and scientific knowledge within care and support for people with intellectual disabilities

Embregts, Petri J.C.M.; Frielink, Noud

doi:10.1016/bs.irrdd.2023.08.003

International Review of Research in Developmental Disabilities

2023

DOI: 10.1016/bs.irrdd.2023.08.003

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Valuing experiential knowledge to complement professional and scientific knowledge within care and support for people with intellectual disabilities

Petri J.C.M. Embregts,

Noud Frielink

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Cited by 4 publications

References 63 publications

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Supporting self‐determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

Kúld,

Frielink,

Schuengel

et al. 2024

Research Intellect Disabil

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BackgroundThis study aimed to identify perspectives of relatives and healthcare professionals regarding self‐determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints.MethodFollowing a concept mapping study, online focus group meetings yielded statements on self‐determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6).ResultsThe 285 statements were categorised into 5–7 clusters per map, revealing key strategies for self‐determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties.ConclusionEach group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self‐determination.

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Supporting self‐determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

Kúld,

Frielink,

Schuengel

et al. 2024

Research Intellect Disabil

View full text Add to dashboard Cite

show abstract

People with intellectual disabilities as peer trainers and their coaches: Impact and experiences in a Dutch training course

den Boer,

Giesbers,

de Beer

et al. 2024

Policy Practice Intel Disabi

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The value of experts by experience within the field of intellectual disabilities is receiving greater recognition. This study explored the experiences of peer trainers regarding the impact of being a (1) trainee in a train the trainer course (n = 9), and (2) peer trainer in a Dutch training course (n = 6) aimed towards the self‐growth of people with intellectual disabilities. In addition to examining the experiences of peer trainers themselves, we investigated the perspective of coaches (n = 4) regarding the experiences of peer trainers. Peer trainers and coaches were questioned using individual and group interviews. Data were analysed using thematic analysis. Three themes were identified: (1) Growing and flourishing, (2) Performing a meaningful role for your peer and (3) Experiencing reciprocity and a sense of belonging. Working as a peer trainer was valuable and produced several benefits, ranging from increased self‐confidence to feelings of belonging and reciprocity.

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The perspectives of agents working in positions of authority within health sector organisations regarding the involvement of experts by experience with an intellectual disability: An exploratory study

van den Bogaard,

de Beer,

Frielink

et al. 2023

Journal of Intellectual & Developmental Disability

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Valuing experiential knowledge to complement professional and scientific knowledge within care and support for people with intellectual disabilities

Cited by 4 publications

References 63 publications

Supporting self‐determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

Supporting self‐determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

People with intellectual disabilities as peer trainers and their coaches: Impact and experiences in a Dutch training course

The perspectives of agents working in positions of authority within health sector organisations regarding the involvement of experts by experience with an intellectual disability: An exploratory study

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