Deborah Davys University of Salford

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

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

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

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

Early 1900`s The Mental Deficiency Act 1913

Removal, incarceration, segregation in self-sufficient colonies

1950`s 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

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

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

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

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

Dissatisfaction with services

Sibling issues

Financial issues

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

(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 didn`t 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..”

“...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”.

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.

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

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.

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

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

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.

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.