Heller, T., Factor, A., Sterns, H., & Sutton, E.,

1996,

Reviewed by Janet Robertson, Institute for Health Research,
Lancaster University

Methodology

This study examines the effectiveness of a person-centred later life planning training program for older adults with learning disabilities, their families, and staff. The sample was 70 adults with either mild or moderate learning disabilities who were aged 35+ (for participants with Down's syndrome), or 50+ (for participants who did not have Down's syndrome). The sample were allocated to either an intervention group or a comparison group. Age range was 35 to 87.

People with learning disabilities in the intervention group took part in a training intervention ("Person-centred planning for later life: a curriculum for adults with mental retardation"). Training topics included: making choices; current and potential living arrangements; work options; health and wellness; use of leisure time and recreation; use of informal and formal supports; making action plans; and self-advocacy strategies. Training took place in groups of 5-7 and involved weekly 2 hour classes and off-site field experiences. As a result of the training, participants developed a written list of desired goals and potential actions to take to their planning meeting. Training was also provided for 48 staff and 14 family members around later life options for people with learning disabilities and ways to support them in making choices and attaining goals. This took the form of one six-hour and one 3 hour training session. For the comparison group, no training was undertaken.

To evaluate the impact of the training, pre-training assessments were carried out and these were then repeated 6 months later. Pre-training assessments included the Later Life Planning Inventory (LLPI) which was completed by interview with service users. This included a lifestyle satisfaction scale, a leisure inventory, a social support network inventory, and a daily choice inventory. Basic demographic data was collected from service staff. A curriculum test was used which assessed knowledge on the major topics covered in the training for people with learning disabilities. The LLPI and the curriculum test were repeated 6 months later. In addition, the first service planning meeting following training was observed to assess individual participation and the degree to which staff facilitated the choices and preferences of the service user. Analyses (using multivariate analysis of variance) compared the intervention and comparison groups on the main outcome measures of: knowledge of choice making and aging issues; life satisfaction; social support; participation in leisure activities; and daily choice making.

Critical appraisal

Whilst the sample size is stated to be 70, it is noted that there are 42 intervention and 37 comparison group participants. It is not clear which figures are correct. Test-retest reliability scores are presented for the various scales used in the study which are acceptable with the exception of health and work domains in the LLPI. Reliability of observations is also acceptable. The age range included is rather wide. No rationale is given for the inclusion of people with Down's syndrome as young as 35. It is assumed that this is due to the increased risk of Alzheimer's disease for people with Down's syndrome. However, Alzheimer's disease is by no means inevitable and the ethics of discussing later life plans with a 35 year old, who may have no known health problems, alongside 87 year olds is debatable. Finally, as noted by the authors, post-training assessment is only undertaken once 6 months after training which may be too soon to pick up changes in outcomes.

Key findings

Knowledge increased significantly more in the intervention group than the comparison group. The intervention group decreased in total life satisfaction, while the comparison group increased. Intervention group staff were significantly more likely to encourage the participation of the individual with learning disabilities in the planning meeting. The tone of intervention group meetings was also more positive. However, there was no difference in the actual participation of individuals in their own meetings. For the intervention group, the goals set during planning were more likely to reflect the person's preferences as identified during the training. Finally, in the intervention group, planning meetings were more likely to include family members (36% versus 12%).

Social work practice/policy implications

This study is unusual in it's emphasis on the training of people with learning disabilities in relation to person centred planning rather than on the training of staff to implement PCP. In this study, it is noted that whilst people with learning disabilities did discuss their preferences during training, they did not do so during actual planning meetings. It is suggested that, for example, more role play prior to meetings may help people to become more involved in their own meetings. The study is also unusual in it's focus on later life planning. Whilst the issue of planning for the transition from school to adult services is often mentioned, the issue of planning for the transitions that take place in later life is less prominent. It is also important for services to plan for later life changes such as retirement.