Resilience in people with intellectual and developmental disabilities
Research type
Research Study
Full title
Resilience in people with intellectual and developmental disabilities
IRAS ID
204645
Contact name
Elizabeth Raye
Contact email
Sponsor organisation
University of Wolverhampton
Duration of Study in the UK
3 years, months, days
Research summary
This research study will provide an understanding of resilience; how it is understood and operationalized for people with intellectual disabilities (ID) and factors associated with it based on interview derived narrative accounts given by people with ID and their carers. By gaining greater knowledge of how resilience is experienced by people with ID, measures of resilience can be adapted and developed with a view to firstly ensuring that the measure adequately captures the scope of resilience for people with intellectual disabilities and can also inform future research into resilience measurement across the lifespan and the design of training and interventions which promote resilience in this population.
The research aims to deepen understanding of resilience across the lifespan in adults with ID and to inform practice about the role of resilience and coping in attenuating the effects of life-events on wellbeing. A further aim is to develop, adapt, pilot and implement measures of resilience and coping developed specifically for people with ID.The research questions in this study are:
1. What understandings and experiences do people with ID and their carers have of resilience and coping?2. How do adults with ID use their resilience and coping to manage life-events to prevent negative impacts on their wellbeing?
3. What factors promote and support resilience and coping in adults with ID?
4. Do perceptions of resilience, life-events, wellbeing and effectiveness of coping factors/strategies differ between adults with ID and their carers?
5. By including individuals at different ages and with severe ID and PMLD, the research will question whether resilience operates in the same way for people with intellectual disabilities at different life stages and with different levels of support needs and levels of cognitive impairment.
A purposive stratified sample of 9 people with ID and a snowball sample of their 9 main carers (n=18) will be recruited through organisations including and supporting people with ID and family carers. Organisations that will be approached include NHS, private care organisations and advocacy organisations. All participants will be aged 18 or over. We will aim to recruit three participants for each age group – three younger, three middle aged and three older and three participants for each different level of support needs and cognitive impairment; three people with profound/severe disabilities, three with moderate to mild disabilities and three mild/borderline disabilities. This will hopefully provide data to answer the fifth research question.
A preliminary interview will be arranged to introduce participants to the researcher and allow the researcher to gather background information about the participant and their life history. Participants will then be interviewed by the researcher using semi-structured interview questions. Data collection will be responsive to the attentional capacity and support needs of participants. The researcher will offer the participants regular breaks and attempt to use language appropriate to each participant. If possible, data will be gathered from the individual with ID with support from their carers, or if not possible due to the level of support needs and associated communicative and cognitive impairments, solely from the carers. Participants will be asked if they would be happy to be involved in work following on from the interviews and for the researcher to get back in contact should she wish to clarify any points from the interview, although further official ethical approval will be garnered where appropriate. People will also be asked if it is ok to chat to their carers about them and to give consent regarding this.
In a separate interview, carer participants will be interviewed by the researcher using semi-structured interview questions regarding the individual that they care for. The carer’s role has several utilities. We are interested in how the carer perceives the resilience of those that they care for as this will offer potential insights into the resilience of those with learning disabilities with differing levels of support needs. Furthermore, it is likely that some participants with intellectual disabilities will have severe expressive and receptive communication difficulties. In such circumstances the interview with the carer will act as a proxy for the experiences of the participant with intellectual disabilities. Interview questions such as, “How quickly does _____ bounce back after something difficult happens in their life?” will require the carer to consider the resilience of the participant with intellectual difficulties based on past experiences.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
17/WM/0002
Date of REC Opinion
25 Apr 2017
REC opinion
Further Information Favourable Opinion