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Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

The life expectancy of persons with intellectual disability is increasing, and this is often occurring concurrently with the aging of their long‐term parental carers. Research in both Australia and around the world indicates that proactive post‐parental care planning is not widely implemented, and transitions primarily happen suddenly following a personal crisis for the primary caregiver. Little focus in Australia has been placed on identifying the barriers that inhibit post‐parental care planning in rural areas, specifically in the context of the newly implemented National Disability Insurance Scheme. This paper examines the factors that limit disability services and their staff in supporting successful post‐parental care planning for individuals with intellectual disability and their aging carers in rural South Australia. Small focus groups were conducted with three groups of rural disability support workers using online technologies to assist with the participants' geographic disparity. A semi‐structured interview guide was developed prior to commencement and was used to initiate discussions on key points. A thematic analysis methodological approach was used for data analysis. There were three themes identified through the analysis; Recruitment; Provision of Care; and Retention. The key findings relating to these themes are presented and supported with exemplar quotes. This research proposes three recommendations for policy or practice change: developing a national advertising campaign for new disability staff that positively emphasizes the high‐level skillset need for proactive planning; supporting rural disability providers to collaborate to establish shared teams of staff with expertise in post‐parental care planning; and, using incentive payments to retain staff with these invaluable skillsets in the disability sector. [ABSTRACT FROM AUTHOR]

Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers. [ABSTRACT FROM AUTHOR]

An increase in descriptive evidence regarding person‐centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well‐being and quality of life. A specific Dutch example is the Integrated Emotion‐Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in‐depth understanding of the use of these components in the day‐to‐day support of older people with ID. A content analysis of five key documents was carried out. Five semi‐structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus‐group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion‐Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion‐Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed. [ABSTRACT FROM AUTHOR]