Transcript Document

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)
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
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.
Deborah Davys,
Directorate of Occupational
Therapy, University of
Salford
Duncan Mitchell,
Manchester Metropolitan
University.
Correspondence to
[email protected]
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).
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.
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
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)
Futures planning,
parental expectation
and sibling concern
for people who have
a learning disability
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
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
Deborah Davys,
person with a learning disability whilst for others, this is a very sensitive
Directorate of
issue which causes distress. Again for some, their experience of services is
Occupational Therapy,
significantly negative whilst others have positive reports. siblings are
University of Salford
concerned however about the future impact of the disabled person upon
Duncan Mitchell, and Carol
their future lives and such findings indicate the need for further empirical
Haigh, Manchester
research.
Metropolitan University.
Acknowledgements:
The authors thank Sibs, the UK charitable organisation for people who
grow up with a disabled brother or sister for their support
Correspondence to
[email protected]