Brothers of Charity National Research Project
Introduction
In the past fifteen years there has been increased trend individualisation and personalisation of supports for people with intellectual
disabilities, and person centred approaches have come to dominate the rhetoric and mission statements of service providers. However, almost
half of all Irish people with intellectual disabilities continue live in large residential settings. Research in the UK shows smaller dispersed
community-based housing schemes are associated with better performance and more positive outcomes than either larger residential facilities
(Hatton and Emerson, 1996). These differences have been found for people with severe and profound learning disabilities, people with multiple
disabilities and people with severe challenging behaviour. There is significant variation in the quality and costs of different models of
service. There is a real need for research on the quality and costs of services for people with intellectual disabilities, and particularly on
the variables which may account for the variation in social inclusion, quality of life and costs across different models.
This project proposes action research. It employs between four researchers, each of whom will study 12 participants with intellectual
disabilities. Participants will be selected to reflect the variety of residential experiences in each region, and will include a significant
number who wish or need different residential option in their lives.
The researchers will be responsible for conducting measurements at four data points over a 2 year period. This will establish personal outcomes
measures or act as a reliability check on existing personal outcomes measures. Other measures of quality of life will also be included in the
study. Additional monthly tracking measures will be conducted, making a very robust research design.
The researchers will participate actively in a person centred planning process for each of the 12 individuals and ensure that personal outcomes
are prioritised and that these are operationalised into clear actions.
The researchers will then enact or accompany these recommended actions in order to evaluate the barriers to their sustainable implementation
after the life of the project.
In this way, it is hoped that the project will have maximum impact on the lives of 48 individuals, while offering valuable learning how to
improve the efficacy and dynamism of Irish disability services.
Aims
The project has four distinct aims:
- To examine the effect of different models of accommodation on the quality of life of people with intellectual disabilities in transition
- To conduct a longitudinal analysis to identify the variables that affect the rate of acquisition of Personal Outcomes and improvements in service quality.
- To examine the effectiveness of person centred planning.
- To conduct a detailed qualitative analysis of the barriers to the sustained implementation of supports that increase social inclusion and quality of life of people with intellectual disabilities.
Module one
An examination of the effect of different models of accommodation on the social inclusion, quality of life and cost of services of people with intellectual disabilities in transition
Models of accommodation include family living, group home living, supported living, living in large residential setting.
This research builds upon recent work by Emerson and others which offered a cost benefit analysis of different models of residential options in Ireland. For example Emerson et al (2005) found that large residential settings are of significantly poorer quality than community-based dispersed housing schemes on a wide range of measures of benefits despite being only marginally less expensive. These differences cannot be accounted for by differences in the characteristics of people supported. Stancliffe and Keane (2000) studied matched groups of Australian adults with intellectual disability living in group homes or semi-independently. Participants living semi-independently experienced better outcomes: significantly less social dissatisfaction, more frequent and independent use of community facilities, more participation in domestic tasks, and greater empowerment. Per-person expenditure was substantially higher for group home participants.
As secondary aim of module one, there will be an opportunity to determination of the reliability and validity of the Personal Outcomes Measure, a process that is widely used in Irish services for people with intellectual disabilities, but which has been subject to very little academic research
Procedure
Selection
Selection of participants will be based on two factors. First an individual Brothers of Charity Service has to show evidence of a commitment to the social inclusion of people with intellectual disabilities and a commitment to use person centred planning to enhance people’s life experiences. Second, a purposive sampling strategy will be used so that each service will show a high degree of diversity with regard to the characteristics of communities, model of accommodation and individual characteristics. Where multiple people in a service share characteristics and models of accommodation, a random selection will be made. Consent is a precondition from inclusion in the study, and refusal will not affect the normal delivery of person centred planning or other services. An accessible pictorial information sheet will be used to assist in the consent process for each of individuals.
Measures
(a) Quality of life will be measured in a multi-dimensional way, using
(b) Models of accommodation will be measured through the questions on eth Living Conditions measure. The Living Conditions has been translated from Norwegian by the author of the study. In Norway it is used as a measure of social prosperity, as part of a critique of the use of GDP as a measure of the prosperity of a nation. The living Conditions has been adapted and used extensively with large populations of people with intellectual disabilities in Norway by Jan Tossebro and others (e.g Tossebro, 2004). It is a 110 item questionnaire which measures support needs; characteristics of the living environment such as living space size, inclusiveness, ownership and autonomy of use; contact with natural supports; level and variety of community participation; employment status and self-determination.
(c) Revenue costs of services will be calculated calculating the costs of direct support staff per diem. In cases where individualised costings are not available, costs will be estimated by dividing the aggregate costs of staffing a unit of service divided by the number of people who use the service in proportion to their level of use, per diem.
Procedure
Once consent has been give, each researcher will interview each participant and meet with members of their circle of support during the first six months of the study.
Data analysis
(a) An analysis of variance will be used to establish differences in quality of life across different models of accommodation, costs and level of disability.
(b) Pearson Product Moment correlations will be used to establish the validity of eth Personal Outcomes Measure.
Module two
An examination of the factors that affect the rate of acquisition of Personal Outcomes.
This is a longitudinal study in which personal outcomes will be tracked at six monthly intervals at four years. In this way the rate of change or improvement in quality of life can be measured across different models of support.
Sample – As in module one
Measures
Quality of life will be measured at three data points over a two year period, using
This is a multiple regression research design.
Factors will include
- Intra - Individual factors such as age, level of disability, challenging behaviours
- Person centred planning factors such as type of outcomes prioritised, quality audit of person centred plan, composition of circle of support, satisfaction with the person centred planning process, philosophical orientation of the circle of support
- Micro-organisational factors such as group size, team leader management style, level of accountability afforded to keyworker
- Two macro-organisational factors: model of accommodation and cost of service
An examination of the effectiveness of person centred planning.
Recent research evaluating the effectiveness of person centred planning for 65 people (Robertson, Emerson, Hatton et al, 2006) found modest positive changes in social networks, contact with families, contact with friends, community-based activities and choice. Although there were benefits in terms of the number and variety of community based activities and non-inclusive social activities, there was no change in stronger markers of social inclusion.
Each member of the sample will participate in a person centred planning process in which Personal Outcomes are prioritised and activities that promote these outcomes are agreed. Particular emphasis will be given to those activities that promote social inclusion, including supported employment, inclusive social networks, voluntary activity and social roles.
Sample – As in module one
Measures – As in module two
Module four
A qualitative analysis of barriers to sustainable improvement in quality of life.
This is an action research project in which the researchers enact or help enact the recommendations of the person centred planning process and attempt of identify factors that hinder the sustained implementation of these activities in the absence of the researcher
Each researcher will complete four activities with participants in the study which are recommended activities for the achievement of four different Personal Outcomes. Researchers will complete a qualitative analysis of each activity, and will interview members of community and conduct focus groups with members of eth circle of support in order to identify the support needed and barriers to the sustained achievement of these outcomes by the person beyond the life of the study.