Dissatisfaction%20with%20services-older%20parents%20of%20people%20who%20have%20a%20learning%20disability

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Dissatisfaction with services-older parents of
people who have a learning disability

• Deborah Davys
• University of Salford

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Background to the study

• Part of MA Gerontology
• Concerned with older parents of people who have a
  learning disability and their concerns for the
  future
• Qualitative study using phenomenological
  perspective and semi-structured interviews

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Aim of the study

• Provide an insight into the perceptions of older
  parents of learning disabled people with regard
  to their future accommodation needs

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Rationale for the study

• Older parents of adults who have a learning
  disability are considered to be a neglected area
  of research
• People with learning disabilities living longer
  and now outliving parents
• National dependence upon older parents and
  families of learning disabled people to provide
  support and accommodation
• Clinical experience in the field

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Issues for parents of learning disabled people
from the literature

• Extended carer role
• Risk of double devaluation on account of age and
  association with learning disability
• Dealing with usual physical, psychological and
  social impacts of ageing
• Concern about the future

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Historical background

• Early 1900s The Mental Deficiency Act 1913
• Removal, incarceration, segregation in
  self-sufficient colonies
• 1950s growth of the human and civil rights
  movements
• 1971 White Paper Better Services for the Mentally
  Handicapped
• The NHS and Community Care Act 1990
• 2001 White Paper Valuing People

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Literature demonstrating tensions between parents
/ carers/professionals

• Shearn and Todd (1997) parents feel service
  providers judge them negatively and do not
  consider the practicalities of their suggestions
• Jackson (2000) parents are accused on being over
  protective and cautions
• Thompson (2001) older parents feel alienated and
  that their needs and wishes are ignored
• Gregory and Smith (2004) parents continue to view
  their overall interaction with service providers
  as unsatisfactory

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Participants

• Ethical approval granted
• Older parents on a social service database sent a
  flyer on the study and were invited to take part
• Four couples participated out of a possible 83
  households
• One parent in each pair was at least 65 years old
• Each couple had one adult with a learning
  disability living in the family home

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Method of study

• Phenomenological perspective taken concerned
  with views and opinions of older parents and
  their experience of the phenomena
• Semi-structured interviews using guiding
  questions that were related to the research aims
• All interviews were audio-taped, key points were
  jotted down and read back to the interviewee at
  the end to check for verification

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Analysis

• All audio-tapes were transcribed verbatum
• Step-by step method as suggested by Burnard
  (1991)
• Emergent themes were put into main categories
• Categories were further refined after discussion
  with research supervisor

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Key themes generated

• Dissatisfaction with services
• Sibling issues
• Financial issues

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Most dominant theme dissatisfaction with
services

• This theme arose in all interviews and was raised
  the greatest number of times.
• Parents feel angry towards service providers
• Parents feel they have to fight to get what they
  want
• Parents do not trust service providers
• Parents feel that what is provided is not what
  they want
• Parents see themselves and service providers as
  being on opposing sides

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Participant quotes

• (3) ..we had to fight tooth, hammer and nail to
  get what we wanted...we still need to fight and
  fight..
• (4) I said I didnt really want an extension
  because (son) would be sleeping downstairs and we
  would be upstairs, and at the time he was waking
  up and we had to get up every night to see to
  him...but she (OT) said that was the only
  answer..

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Participant quotes

• ...they think we are a load of hassle and we are
  a load of hassle because we do complain and we do
  complain at the right place and they certainly
  find out what it is that we are thinking about..
• ..they say well people like (son) should be
  allowed to do things on his own without recourse
  to you (parents), ..to make his own decisions,
  now if we went along with that theory...it is
  just not suitable.

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Discussion

• This dissatisfaction with services supports the
  views of tensions between service providers and
  parents as expressed by Jackson (2002) relating
  to trust and Burke (2001) who claims that parents
  are often considered by service providers as
  over-protective and maintain their offspring in a
  child-like state.

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Limitations of the study

• Small sample size
• Difficulty in generalising the results
• Cross sectional and provides only 1snap shot of
  parents views and opinions
• Subjectivity of analysis
• Participants from a white English ethnic
  background

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Future work and implications for OT

• Need awareness of the issues of anxiety, anger
  and distrust that may be present when working
  with older families about futures planning
• Parents may wish to maintain a significant role
  in futures planning
• Need active engagement and collaboration with
  family members in futures planning and a
  client-centred approach.

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Future work and implications for OT continued

• Need to be aware of and sensitive to family
  history and background
• Futures planning needs to start early is a long
  process and requires much building of trust
• Need to consider where person with LD will live,
  finances, usual and preferred lifestyle,
  guardianship issues.
• Cross agency working and education
• Support such as counselling, advice and
  information provided to parents / carers

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Future research arising from this study

• Adult siblings of people who have a learning
  disability concerns and plans for the future
  and the impact of parents upon planning process.

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References

• Burnard, P. (1991) A Method of Analysing
  Interview Transcripts in Qualitative Research.
  Nurse Education Today.11 pp461-466.
• Burke, C., Chenoweth, L. and Newman, M. (2001)
  Lost in a Crowd Issues Confronting Adults with
  Intellectual Disabilities and their Ageing Family
  Members. Geriaction.19(4)pp10-15.
• DoH(2001b) Valuing People a new strategy for
  learning disability for the 21st century. London
  The Stationary Office
• Gregory, C. and Smith, M.S. (2004) Predictors of
  the Stage of Residential Planning Among Ageing
  Families of Adults With Severe Mental Illness.
  Psychiatric Services. Vol. 55, No. 7, pp804-810.

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• Jackson, R. (2000) Bound to Care An Anthology
  Family Experiences of Mental Handicap. In Tait,
  T. and Genders, N. (Eds) Caring for People with
  Learning Disabilities (2002) London Arnold,
  pp92-106.
• Shearn, J. and Todd, S. (1997) Parental Work An
  Account of the Day-to-day Activities of Parents
  of Adults with Learning Disabilities. Journal of
  Intellectual Disability Research. Vol.
  41,part4,pp285-301.
• Thompson, D. (2001) Futures Planning for People
  with Learning Disabilities Living with Older
  Family Carers. Managing Community Care. Vol.9,
  2,pp3-6.