Factors that impact on the sibling relationship where one person has a learning disability

1. Background and rationale: • Many people with a learning disability are supported in the family home by older parents. • When parents are no longer able to provide support, siblings are expected to provide ongoing support at some level. • The significance of family carers in relation to people who have a learning disability is noted by the government. (DoH 2008) Factors that impact on the sibling relationship where one person has a learning disability • Results: • There are a range of relationships between siblings and people who have a learning disability that range from very close and warm through to hostile and non existent (Zetlin 1986) • There are conflicting reports about the impact of age upon the sibling relationship (Begun 1989, Orsmond et al 2009), however the relationship is found to shift over the life course (Hodapp and Urbano 2007). • The family context ,climate and levels of parental support are linked to closeness of the sibling relationship (Orsmond et al 2009). • In addition to age, gender, birth order and chronological spacing, geographical proximity impacts upon the relationship. The most involved sibling is likely to be an older sister who lives within one hours travelling distance (Seltzer et al 1991). • More intensity and conflict is noted when siblings share the same home environment (Begun 1989). • Results on the impact of disability status and level of function are conflicting (Orsmond and Seltzer 2000). • A decline in the relationship between brothers and people who have a learning disability has been noted alongside a decline in maternal health. This relationship reverted to previous levels after maternal death (Orsmond and Seltzer 2000). Method: • A literature search of empirically based articles published in peer reviewed journals between 1977 and 2009 was carried out. • Key search terms “siblings, brothers and sisters, adult, learning disability, intellectual disability, developmental disability, mental retardation, mental subnormality, mental handicap and learning activity limitation “ were used. • Databases searched included Google Scholar, Psychinfo, Ovid, Medline and CINHAL. • Citation tracking was also used • Notes were made on the aim, methodology, sample, method of data collection, analysis and results of each paper. • Results and issues arising were compared and contrasted Conclusion and discussion: The relationship between siblings and their learning disabled brothers and sisters is varied. It is influenced by factors such as gender, the type and level of disability, age, residential status, birth order family climate and maternal well being. This review highlights the lack of research into this area and dissonance between societal expectations and the needs / wishes of siblings regarding their input to the future care of people who have a learning disability. ritiCque of the literature: Most participants were white, middle class women from America and Northern Europe who volunteered to take part. Many studies are cross sectional, do not include a comparison group and present the perspective of one sibling only. References Begun,A.L. (1989) Sibling Relationships Involving Developmentally Disabled People. American Journal on Mental Retardation. Vol 93, No. 5, 566-574. Department of Health (2008) Valuing people now: from progress to transformation. London:DoH Hodapp, R. M. and R. C. Urbano (2007) Adult siblings of individuals with Down syndrome versus with autism: findings from a large-scale US survey. Journal of Intellectual Disability Research. Vol.51, No.12 pp1018-1029. Orsmond, G.I., Kuo,H and Seltzer,M.M. (2009) Siblings of individuals with an autistic spectrum disorder. Autism. Vol.13,(1), pp59-80. Orsmond, G. L. and M. M. Seltzer (2000). "Brothers and Sisters of Adults with Mental Retardation: Gendered Nature of the Sibling Relationship." American Journal on Mental Retardation. 105(6): 486-508. Seltzer, G. B., A. Begun, et al. (1991). "Adults with Mental Retardation and their Ageing Mothers: Impact of Siblings." Family Relations 40: 310-317. Zetlin, A. G.(1986). "Mentally Retarded Adults and Their Siblings. ." American Journal of Mental Deficiency 9(3): 217-225. Photo by http://www.flickr.com/creativecommons/netzanette accessed 25.10.09 Deborah Davys, Directorate of Occupational Therapy, University of Salford Duncan Mitchell, Manchester Metropolitan University. Correspondence to D.Davys@salford.ac.uk

2. Background and rationale: • Older parents often support learning disabled people at home. • Siblings are often expected to provide support when older carers cannot. • There is a lack of research into sibling needs • The importance of family carers is noted by the government. (DoH 2008) Critique of the study: 85% of respondents were women aged between 25 – 54 living in England Smale response rate Ethnicity, education and socio-economic status not addressed Futures planning, parental expectation and sibling concern for people who have a learning disability Method: Following ethical clearance a questionnaire related to demographics, futures plans, parental expectation and sibling concerns was sent via email to 200 adult siblings aged 25 and over of people who have a learning disability on the Sibs database Analysis: 21 questionnaires were returned. Descriptive statistics were used to analyse closed questions and a form of content analysis was used to analyse written comments Results: 85% of respondents were women and 76% were aged 45 or under. The most common level of contact (23%) with the disabled sibling was reported to be more than once per week – no respondent had contact less than once every 6 months. Although 57% of siblings reported a full discussion about the future had taken place with parents, 57% reported no existence of a clear futures plan. 52% of siblings reported no difference between their own wishes for the future and those of parents, 33% reported difference in wishes and 14% were unclear. Key themes arising : Satisfaction with services-both dissatisfaction and satisfaction was reported Parental influence and impact on futures planning-mixed reports of both open and non-discussion of this topic Siblings are worried about the future related to the removal of parental support and responsibilities towards their own families Siblings have needs-includes access to support, better quality and range of services and assistance with their support role Conclusion and discussion: Overall there appears to be diversity across the sibling experience. For some, there are full and frank discussions about the future care of the person with a learning disability whilst for others, this is a very sensitive issue which causes distress. Again for some, their experience of services is significantly negative whilst others have positive reports. siblings are concerned however about the future impact of the disabled person upon their future lives and such findings indicate the need for further empirical research. Deborah Davys, Directorate of Occupational Therapy, University of Salford Duncan Mitchell, and Carol Haigh, Manchester Metropolitan University. Correspondence to D.Davys@salford.ac.uk Acknowledgements: The authors thank Sibs, the UK charitable organisation for people who grow up with a disabled brother or sister for their support