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

Psychosocial wellbeing in active older adults: a systematic review of qualitative literature

Physical activity and wellbeing in older adults is a global priority in combating negative economic consequences associated with population aging. Quantitative research using a medicalized model clearly associates physical activity with physiological health benefits. However, it is argued that a review of qualitative literature exploring individual experiences of active older adults can provide important insights into physical activity, aging, and wellbeing – specifically, how discourses of ageing and self-identity may interact with physical activity levels. A literature search on electronic databases PsycARTICLES, PsycINFO, SPORTDiscus, and ProQuest was used to identify qualitative studies of older adults who exercise or engage in competitive sport. Findings reveal that both groups tend to resist dominant negative stereotypes of ageing and view physical activity as central to self-identity. Yet approaches to ageing varied with the competitive sport group adopting a more negative view of the ageing process. Whilst results suggest that different levels of physical activity may impact on the psychosocial wellbeing of older adults, inconsistent definitions of exercise and competitive sport make it impossible to group these differences according to specific physical activity levels. More precise definitions of physical activity constructs in future research may provide a better understanding of these differences

Older parents caring for adults with intellectual disability

Background: Older parents of adults with intellectual disability (ID) face a lifetime of care. Despite the physical and psychological strains of caring many are reluctant to ‘retire’ and plan for their child’s external residential placement. Method: Using a case study approach, parents and siblings of adults with ID from three families were interviewed in relation to their understandings of past and current care and also future planning. Results: Parents who viewed the carer role as a parental obligation were at risk of isolating themselves from siblings of ID child thereby leaving siblings ill-prepared in an emergency situation. Though all families had considered residential planning, no plans had been established. Explicit barriers included complexity of disability, negative transitioning experiences in the past, and unpredictable changes within the family system. Enablers included personal growth of the adult with ID, and encouragement from professional supports such as psychologists. Discourses of ID may also be a factor, with descriptions of the adult as ‘child-like’ potentially preventing transition into adulthood, such as leaving home. Clinical Implications: Psychologists could play a pivotal role in assisting families who are faced with such non-normative development of the family system, and so encourage future planning for care. Psychologists could also support parents in negotiating complex support systems such as the NDI

Re-evaluating the factor structure of the self-assessed wisdom scale (saws)

Background. Although wisdom is a desirable developmental goal, researchers often lack valid and reliable construct measures. Webster’s (2007) popular 40-item five factor SAWS structure has had mixed support in the literature. We tested this factor structure, and age group equivalencies. We also examined whether the SAWS Openness dimension is a wisdom precursor, as proposed by other models of wisdom. Methods. Data from 709 respondents were randomly split into two. We performed confirmatory factor analysis (CFA) on Sample 1. If the model did not fit the data, then exploratory factor analysis (EFA) on Sample 2 would offer an alternative model that could be confirmed on Sample 1. Structural equation models analysed Openness as a SAWS antecedent and a wisdom component. Multigroup CFA tested invariance across age groups. Results. The SAWS failed to replicate in the initial CFA. We extracted a 12-item four factor EFA solution, which excluded Humour factor. Openness as a wisdom component was a better model than as antecedent. Implications. The 12-item four factor model clarifies the key components of the SAWS and can be used across the adult lifespan as different age groups are invariant. We suggest Openness is better understood as a component of the SAWS

Students managing work and study role boundaries: a person-centred approach

To cope with demands of working while studying, students must structure the boundaries between these roles (e.g., integrate or segment them) to suit their preferences and circumstances. However, students differ on how well they do this, and we do not yet understand the factors that contribute to managing work and study well. We sought to determine if different student groups existed and if the groups reported different work, study, and wellbeing outcomes. Using latent profile analysis and assessing work-study boundary congruence and flexibility (N = 808; 76% female; MAge 19.6 years), we identified four groups of (a) “balanced” (65.4%; with moderate boundary congruence and flexibility); (b) “high work congruence and flexibility” (17.5%; working arrangements supportive of study role); (c) “low work congruence and flexibility” (9.7%; unsupportive workplace arrangements); and (d) “low study congruence” (7.3%; study arrangements unsupportive of work role). These groups reported different work/study demands, role conflict, study burnout, and perceived employability, with “balanced” and “high work congruence and flexibility” groups scoring more positively and “low work congruence and flexibility” and “low study congruence” groups scoring more negatively. Results supported that different student groups existed, and these will need different supports to manage their multiple role responsibilities

The impact of a Student vs Worker identity on work-study conflict and facilitation in university students

Students enrolled at two Australian universities were surveyed about their work and study demands, their control over their job and work schedule, and their levels of work-study conflict and work-study facilitation. While they were completing both university studies and paid employment, their primary identity was either as a student (n = 908) or as a worker (n = 486). Average scores on all measures were significantly different between those whose primary identity was as a student (who works) or a worker (who studies). The demographic variables also showed that those with the student identity worked fewer hours and were considerably younger than those with the worker identity. The four predictor variable significantly predicted work-study conflict and work-study facilitation for both identities. Implications are discussed in terms of the development of their identity

I’m still in the blue family: gender and professional identity construction in police officers

With an increase in gender equality policies and gender balance targets within traditionally male professions, organisations such as the police service are experiencing changing demographics. How these shifts influence the construction of professional identity is unclear. Drawing on focus group data, this study aimed to explore identity construction of police officers across gender using a thematic analysis method. Two themes related to identity construction were found to be common to both male and female police officers: ‘Working within a blue family’ and ‘Being a copper is a job for life’. However, the way in which these themes were articulated differed between male and female officers, with male officers experiencing more difficulty than female officers in terms of positioning their identity within the evolving police culture. The findings from this study have implications for gender policies in the workforce as they suggest that men may experience more difficulty than women in adjusting to a gender-diverse workforce, and that professional identity within traditionally male professions is more complex and nuanced than what was previously assumed

Students managing work and study role boundaries: a person-centred approach

To cope with demands of working while studying, students must structure the boundaries between these roles (e.g., integrate or segment them) to suit their preferences and circumstances. However, students differ on how well they do this, and we do not yet understand the factors that contribute to managing work and study well. We sought to determine if different student groups existed and if the groups reported different work, study, and wellbeing outcomes. Using latent profile analysis and assessing work-study boundary congruence and flexibility (N = 808; 76% female; MAge 19.6 years), we identified four groups of (a) “balanced” (65.4%; with moderate boundary congruence and flexibility); (b) “high work congruence and flexibility” (17.5%; working arrangements supportive of study role); (c) “low work congruence and flexibility” (9.7%; unsupportive workplace arrangements); and (d) “low study congruence” (7.3%; study arrangements unsupportive of work role). These groups reported different work/study demands, role conflict, study burnout, and perceived employability, with “balanced” and “high work congruence and flexibility” groups scoring more positively and “low work congruence and flexibility” and “low study congruence” groups scoring more negatively. Results supported that different student groups existed, and these will need different supports to manage their multiple role responsibilities

Rural and urban older adults perceptions of mental health services accessibility

Objectives: Older adults have been recognised as a group with poor access to mental health services, particularly those in rural areas. Using a decision framework of recognizing psychological problems, deciding to seek help, and choice of help, this study investigated older adults’ access to mental health services using a mixed methods design. Methods: Ninety-four older adults from remote, regional and urban Australia returned surveys and twenty-one of them participated in focus groups and in-depth interviews. Participants were asked to identify psychological problems, the decision to seek help including perceived barriers to accessibility of mental health services, and the choice of help including their understanding of mental health disciplines and their views of service use. Results: When regional differences appeared, inner regional older adults reported more access problems than either urban or outer regional participants. Although older adults have a good understanding of mental health disciplines and accurately identified depression and substance abuse, they had difficulty recognizing anxiety and were uncertain as to when symptom severity should indicate that one should seek help. Though stigma was largely dismissed as a thing of the past, self-sufficiency was implicated as a psychological barrier to accessibility. Conclusion: Older adults may have difficulty in recognizing anxiety and milder levels of mental health concerns. This may be further complicated by a high value of self-sufficiency. These barriers need to be considered by all professionals working with older adults, in particular GP’s who were identified as expert health advisors

Recommendations for male-friendly individual counseling with men: A qualitative systematic literature review for the period 1995–2016

Over the past few decades, there have been calls to customize therapy for men. Researchers have increasingly become aware of the impact of masculinity on men and their psychological health, their willingness to seek help, and their experience of therapy. Recommendations have been published for how to enhance engagement and therapeutic change for men in counseling. This article systematically collected and examined recommendations for individual male-friendly therapy from 44 sources written over a 21-year period to identify common themes using qualitative methodology. The resulting 4 themes included knowledge about men, masculinity, and socialization; therapist critical self-awareness and commitment; masculinity-informed treatment adaptations; and masculinity-informed tasks and goals. The themes were discussed in relation to relevant research and similar diversity-sensitive approaches, including different ways that masculinity knowledge was incorporated into treatment and the ethical implications of targeting traditional masculinity for change. Increased empirical research on male-friendly counseling is needed to validate existing recommendations