The findings strengthen the importance of examining both the overall perception of FQOL as well as the perceptions in individual life domains. Moreover, they highlight the need to examine each life domain according to its various dimensions. In sum, the results call for further examination of the FQOLS-2006 as a useful tool for assessing FQOL and for implementing services based on it.
The conceptual model of the FQOLS-2006 was supported with some qualifications. Each domain on the survey can be reliably measured by four dimensions Opportunities, Initiative, Attainment and Satisfaction. The dimensions of Importance and Stability, however, did not fit. Data reported on these dimensions from past and current studies should be interpreted with caution. The construct of FQoL is also reliably measured by the domains of the FQOLS-2006. Further research into the psychometric properties of the survey, particularly from a cross-cultural perspective, is needed.
The effect of out‐of‐home residential placement on families has been previously studied. However, no study has examined this issue through the lens of “family quality of life” (FQoL). The aim of this study was to produce a picture of FQoL among families with a member with an intellectual disability (ID) who has multiple diagnoses (i.e., an additional condition such as a behavioral or emotional disturbance). FQoL before and after residential placement was examined. Sixteen family carers with family members with an ID participated in an in‐depth interview focusing on five areas of FQoL: stress, coping, emotional impact, family relationships, and overall FQoL. The authors found that most families reported positive emotional changes after the placement occurred, except for lingering guilt and worry. In addition, after placement, families experienced more freedom, enhanced FQoL, and an improvement in familial relationships. Coping mechanisms, including problem‐focused and emotion‐focused coping, as well as external support resources, were utilized before and after placement. These findings suggest that an out‐of‐home residential placement of a family member with an ID both positively and negatively impacts the entire family. The authors propose a number of support recommendations that might serve to enhance the QoL of the individual with a disability, specific family members, and the family as a whole.
Accessible summary
This paper is about older people with learning disabilities who live in the country in Australia.
We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder.
These people said that they were well supported by the local community and particularly their doctors.
However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like.
Abstract
Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia.
Materials and Methods: This pilot project examined data drawn from 34 semi‐structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas.
Results: It was observed that the capacity of certain rural areas to support meaningful choice‐making was limited due to constraints of access to key services, including community‐based aged care, generic and specialist health services, and both supported disability and aged‐care residential options. Responses indicated that those living in both small‐ and medium‐sized congregate care settings (such as group homes and residential aged‐care facilities) had more limited choices and only partial (if any) control over their living situation.
Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged‐care and disability support structures are built on individuals' needs.
Family quality of life literature suggests that families with a member with an intellectual/developmental disability frequently face major difficulties in building social connections with others. They experience low levels of social support, face challenges in community inclusion, and are at risk of social isolation. These challenges may also be faced by other types of marginalized families. Families experiencing serious illness, families experiencing intrafamily violence, and migrant families or those seeking political asylum, for example, may also become isolated and find themselves without pathways to connections with others. We present practical suggestions intended for families and professionals interested in action and intervention at the personal, community, program, and policy levels to encourage the growth of social connections and prevent isolation of families experiencing social exclusion. The suggestions will come from families with a member with a disability and the findings of a study examining the social support of families as it relates to quality of life.
Research suggests that individuals with developmental disabilities and challenging behaviors resulting from complex impairments tend to experience poor health status linked to lifestyle factors (including inadequate diet and poor nutrition). Individuals living in group home settings seem to be especially vulnerable, as they may often be provided with meals that may not be nutritionally adequate. This article describes how the need for a nutritional intervention program for group home staff was determined, the nature of the program itself, and the impact of the program upon meal composition and on staff and residents. Subjects were supervisors and group home staff members responsible for providing meals in four group homes to 21 residents. The program consisted of two training sessions for staff and follow‐up monitoring through daily photographing of meals, weekly communications with staff, and monthly measuring of the body mass of group home residents. The program was assessed through a time series evaluation of photograph ratings measuring meal composition. Results indicated that meal nutrition and composition improved significantly over the duration of the nutrition intervention program. The authors conclude that a meal enhancement model may be effective in improving meal nutritional compositions in group home and other community‐based settings, thus providing opportunities for improved health status.
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