Adult Siblings of People with Autism and High Support needs - their experiences, perspectives and future support needs

Lead Research Organisation: University of York
Department Name: Health Science

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
 
Description This qualitative study explored the views and support needs of adult siblings of people with autism plus a learning disability.



Autism associated anxieties, behaviours and communication difficulties had meant most participants had experienced a 'chaotic' family life while growing up.The needs of the child with autism, meant that rigid routines were often implemented.This could cause tensions. Siblings also reported that their parents were under considerable stress and had limited time to give them individual attention. Activities and outings were often disrupted too. Siblings were aware of how much their parents had struggled to get recognition and appropriate support to meet their autistic child's needs.



Perhaps not surprisingly, many siblings in the sample described themselves as 'parenting the whole family', often assuming considerable caring responsibilities from an early age. However, professionals involved with the family largely overlooked siblings' caring responsibilities and rarely offered information, advice or support. This plus parental pre-occupation could create resentments in later life. Nonetheless, most siblings maintained a close relationships with their autistic brother or sister, although their involvement was often limited by other commitments; distance; and difficulties in communication and sustaining empathy with their sibling. This, however, was sensitive to context, time and space. Our meetings with sibling pairs demonstrated continuity, effective individualised communication, shared history and mutual understanding.



Some adult siblings interviewed had begun to assume increasing responsibilities in overseeing their sibling's care arrangements, particularly as their parents aged. Most siblings wanted help from a third party when negotiating this in making future plans.This rarely happened spontaneously.



Interviews with practitioners confirmed how ill-prepared they were when engaging with siblings, often having little understanding of their needs.They saw siblings as a potential resource for the person with autism or as substitute parents rather than as individuals with their own issues.This frustrated siblings, especially since many had concerns about the future. Siblings especially felt practitioners could do more to facilitate their relationship with their autistic sibling, while commenting more broadly, on the reactive nature of service provision. Examples of good practice did exist and some staff worked hard to include siblings, in the life of the person with autism.This included providing regular feedback, cards and photographs.This was appreciated by siblings, who also wanted to build a relationship of trust with key staff.



Siblings saw their current and future role as different from their parents.They were from the same generation as their brother or sister but their own lives were more unpredictable.They wanted to be formally supported in their role, although some they felt put under pressure by social care staff to do more than they could.



In conclusion, by becoming more 'sibling aware' and recognising, valuing and supporting siblings, social care would not only maximise the disabled siblings' quality of life, but also ensure a more productive and fulfilling context for family relationships, which would be particularly beneficial at times of crisis and transitions.
Exploitation Route The research has been widely disseminated to health and social care professionals, so as to enable them to facilitate good practice in the care of adults with autism and their families. The findings have also been disseminated to families. There have been scientific as well as economic and societal impact associated with the project.



A project findings summary, produced in April 2011, has been widely distributed through third sector and statutory networks, to research participants and at dissemination events.



Two feedback sessions/focus group discussions were held with twelve sibling participants in York and Maidstone (February 2011). These events were exceptionally well evaluated. Siblings appreciated the opportunity to meet each up and discuss their experience.The participants wished to maintain contact with each other. Both events were attended by an adult sibling development worker, working for Sibs (a voluntary organisation, working with the researchers: see http://www.sibs.org.uk/). This worker provided advice on further sources of support and gathered views about how Sibs could further support adult siblings. The value of bringing siblings together - some of whom had never met another sibling before - was further evidenced when one of the participant's brother (with autism) died suddenly: the other siblings offered support individually and as a group.



Three dissemination events, focused on developing and sustaining good practice and co-ordinated with Sibs include:



• A workshop in Nottingham for social care staff, held in April 2011 (n=12). This was well evaluated by participants.

• A workshop offering advice on good practice with house managers at a provider organisation in Lincolnshire (May 2011; n=8). Participants welcomed the workshop and said it would make them more 'sibling aware' and proactive with families.

• A 'Making Research Count' seminar and workshop in York in May 2011 (36 participants, largely from social care). Twenty-five of the participants rated the usefulness of the research presentation as 'excellent' to 'very good'.



The research also contributed to post-qualifying nursing module on learning disability and autism (University of York).



Sibs are placing a summary of the research findings on its website, which will be available for downloading.



Two academic posters have been presented:

• Involving People with Autism and High Support Needs in Research: Exploring Sibling Relationships in Adult Life' (10th 'Seattle Club' Conference on Research in Intellectual Disabilities: Llandudno, Wales, December , 2010). Audience: largely researchers working in learning disability (n=50).

• 'The Soundtrack to my life': supporting adult siblings of people with autism (National Autistic Society Professional Conference, Manchester, March 2011). Audience: multi-disciplinary, including health and social care practice, service users and family member (n=300). A research participant agreed to work with the team and present the poster.
Sectors Healthcare,Other
URL http://www.york.ac.uk/media/healthsciences/documents/research/summaryofresearchadultsiblingsofpeoplewithautism/11164_A4_report_4-1.pdf
 
Description The project has improved the visibility of adult siblings, who have a brother or sister with autism. This is where the social impact of the project is located (for more detail see specific impact statements). In addition to contributing to research debates, we have worked with adult siblings, health and social care practitioners and third sector partners. We presented our initial findings with siblings who had participated in the research at two workshops (in the North and South of England). These allowed siblings to meet others in a similar position to themselves, sometimes for the first time. They valued these sessions and congratulated the research on raising their profile of adult siblings. These sessions also proved invaluable in advising the research team, on how to disseminate findings. More generally, participation in the research, led many siblings to comment on how they were felt more confident to engage with service delivery. In partnerships with our voluntary sector partner, Sibs (http://www.sibs.org.uk/) we were able to signpost people to relevant sources of support. The lack of evidence based practice meant working with health and social care practitioners was an important part of our dissemination strategy. Our dissemination was assisted by successful working partnerships with third sector organisations, such as Sibs, who supported us in presenting and disseminating our research findings. Sibs also used our findings to develop their own work with siblings, including using our research, to justify requests for funding.
First Year Of Impact 2012
Sector Healthcare,Government, Democracy and Justice
Impact Types Cultural,Societal
 
Description Adult siblings of people with autism 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact A workshop for social care professionals to discuss policy and practice implications of research study

This event challenged social care professionals' views of sibling involvement in the care of a brother or sister with autism.
Year(s) Of Engagement Activity 2011
 
Description Bilingual presentation, Bradford/Leeds area meeting, UK Thalassaemia Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact The audience of about 40 community participants included both patients as well as family members from different ethnic groups of Indian and Pakistani origins. SC's presentation generated a lot of interest and a series of questions from the audience regarding carrier status. The local haematologist stepped in to answer the more clinically oriented questions. SC was requested to translate her presentation into Urdu for the benefit of those who did not understand/speak English.

The presentation generated a lot of interest among the community members, both young and old. The notable impact was the request to translate the findings into Urdu, providing a space for a bilingual discussion on the issues raised by SC's presentation, especially the thorny issue of consanguineous marriages. This has historically been a difficult issue in the region, given the high rate of consanguinity and its potential health impacts, as recently reported in the BB study in Lancet last year.
Year(s) Of Engagement Activity 2014
 
Description Siblings and autism across the lifespan : implications for policy and practice 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact This is the presentation used in the Making Research Count workshop, held in York, May 2011. The workshop - a mix of formal sessions with focused discussion groups - offered an opportunity to disseminate our findings to social care practitioners from eight neighbouring local authorities. The aim of the seminar was to help participants - all of whom work with adults who have autism - use our research findings to inform their practice, while also signposting them to further sources of support.

More statutory and voluntary organisations asked for summaries of our work
Year(s) Of Engagement Activity 2011
URL http://www.york.ac.uk/spsw/news-and-events/events/mrc/2011/mrc-12-may-11/