Higher social distress and lower psycho-social wellbeing:examining the coping capacity and health of people with hearing impairment

Abstract
Purpose: The objectives of this paper are as follows: (1) propose an explanatory model as to how hearing disability may impact on health and (2) examine the model’s utility.
Methods: Data were collected on the psycho-social wellbeing, disability and physical health of farmers (n=56) participating in an intervention to manage the social impacts of hearing disability. Two models were proposed and examined using multiple hierarchical linear regression. Model 1 used self-rated quality of life and model 2 used capacity to manage hearing and listening impairments, as dependent variables.
Results: The analyses found that physical measures of hearing impairment (audiograms) were not correlated with physical or mental health outcomes. However, in model 1, self-confidence and self-rated ability to manage hearing impairment were most closely associated with reduced quality of life (anxiety and diastolic blood pressure were positively associated with quality of life). In model 2, higher anxiety and reduced self-confidence were associated with decreasing ability to successfully manage one’s hearing impairment.
Conclusions: The findings support the explanatory model that stress is higher and wellbeing lower when the fit between the person’s coping capacity and environmental demands is poor.

Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia

BACKGROUND: Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. METHOD: The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. RESULTS: The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. CONCLUSIONS: The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

Objective : Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

Methods : The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

Results : Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

Conclusions : This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity.

Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose : Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods : A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results : Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions : Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

Development of a measure of health literacy for caregivers of people with cancer

Caregivers play a key role in supporting people with cancer. Little is known about challenges that caregivers might have when finding and understanding health information, making health-related decisions, and navigating the healthcare system. Using an innovative mixed-methods approach, the study developed and evaluated a tool to measure cancer caregiver health literacy.

People making choices: the support needs and preferences of people with psychosocial disability: project summary

The aim of this project was to improve understanding of the choices that people with psychosocial disability would make about support for priority life goals if they were offered individualised funding packages. This was timely given the inclusion of psychosocial disability in the National Disability Insurance Scheme (NDIS), which has been designed to enable Australians with disability the opportunity to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports (Commonwealth of Australia, 2013b).

A monster that lives in our lives: experiences of caregivers of people with motor neuron disease and identifying avenues for support

BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Report of the meeting of experts to define strategic priorities for the regional agenda on the situation of persons with disabilities

Includes bibliography

Tradução e adaptação transcultural do Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire (CPCHILD©) para a lingua portuguesa do Brasil

Pós-graduação em Bases Gerais da Cirurgia - FMB

Políticas públicas educacionais, direitos sociais e democratização do acesso à escola: uma visão a partir da implantação da ação TECNEP da Rede Federal de Educação Tecnológica

Pós-graduação em Educação - FFC