Planning for caregiving of adults with intellectual disability: Australian perspectives

Planning for caregiving of adults with intellectual disability: Australian perspectives

Many families of adults with intellectual disability face a lifetime of caregiving, or the difficult decision of trusting their loved one in the care of another. With increased life expectancies for adults with intellectual disability, there is a growing awareness of the
importance of residential care planning. Extant literature have identified a number of variables that may influence planning; external factors may include service provision and disability policy, internal factors include caregiver and care recipient characteristics. Whilst external factors highlight influences at a societal level, internal factors highlight the importance of the family system. This system may either adapt to the challenges associated with caregiving or may adopt maladaptive interaction patterns that further prevent caregiver decision-making. While existing caregiving research has investigated individual family member experiences regarding future planning, to date, little research has viewed this issue through a wider family, or social lens. Therefore, the overall aim of this program of research is to combine a macro, meso, and micro level approaches to improve understandings of planning for caregiving of adults with intellectual disability from a social context and from a family systems perspective within Australia.

Study 1 provides an evaluation of caregiving related news stories in Australian print and radio broadcast media. Using quantitative content analysis and news framing, Study 1 analysed six years of news representations of family, residential care, and disability related news stories during a time when major disability policy change was being implemented in Australia. As such, this study provides important insights into the potential impacts of such policy change at a societal level, as presented by, and filtered through, the media. Results indicated that despite Australia’s paradigmatic shift in disability policy relevant media news stories were predominantly negative during the period investigated. News media also tended to present the government as culpable. Additionally, whilst news stories were inclusive of parents as sources, these sources were presented as representative of families, whilst persons with intellectual disability continued to be overlooked.

Study 2 extends this media evaluation, by gathering further qualitative data from television broadcast media during a critical period of policy implementation. This addresses potential differences in media presentation based on modality. Furthermore, the inclusion of discursive methodology allowed for a more detailed examination of language-use in constructing roles and representations of caregivers and government bodies in relation to residential care options. Parent and sibling caregiver roles were constructed as martyred, contrasting with the construction of adults with intellectual disability as perpetual children. This has implications for how the family system may interact and approach care planning. Additionally, negative constructions of the government aligned with representations in Study 1.

Collectively, the qualitative findings from Study 1 and Study 2 highlight that media reporting of caregiving and residential care planning is dominated by a deficit model. Through this deficit-based lens media reports continue to highlight government failings in policy and funding, position persons with intellectual disability as vulnerable and at risk, and present an often singular perspective of family experiences via parent sources. Clearly such a model of presentation has potential implications on family decision making.

In order to examine this decision making, Study 3 used case study design of three family systems to collect in-depth and multiple family member experiences of caregiving and future planning for adults with intellectual disability. Findings revealed that family experiences often deviated from those reported in the media. Understandings of disability, and interactions within the family system shaped family caregiving and attitudes towards future care accommodations. Whilst identifying imperfections within services and government policy, family members did not dwell on these shortcomings as depicted in media representations in Study 1 and Study 2. Though some family members constructed representations of adults with intellectual disability as perpetual children, others offered an
alternative narrative that reflected language of current policy, emphasising the potential for
growth and individual choice.

This thesis contributes to knowledge in a number of ways. Firstly, the comprehensive examination of multiple media presentations of disability related issues demonstrates that dominant and stereotypical narratives persist, even when policy change encourages more progressive and inclusive constructions of disability and those with disability. Clearly political change may alone not be enough, social forces driving acceptability of such reporting may be required to shift these deeply embedded representations. Secondly, Study 3 adds to the current literature on family caregiving and future planning by exploring the experiences of multiple family respondents. This helps to inform understandings of the family systems within a disability environment. Finally, this program of research provides support for the utility of a lifespan family systems model in advancing knowledge of, and
support services for, families faced with planning for caregiving of adults with intellectual disability. Collectively the challenges and opportunities identified in this body of research may support key stakeholder relations, and inform both organisational and governmental policy designed to improve successful planning and smooth transitioning for individuals with intellectual disability and for all family members.