An investigation into the subjective wellbeing of people with an intellectual disability

This thesis investigated the theory of subjective wellbeing homeostatic control for a sample of New Zealand people with mild to moderate intellectual disability, compared to non-disabled people. This involved three linked quantitative studies that investigated the internal buffers of self-esteem, control and optimism.

Measuring the social inclusion of people with a disability in Australia : the first national 1-in-4 poll

 Measuring social inclusion of people with a disability in Australia: the first national 1-in-4 poll. Moore, M; Hagiliassis, N; McGillivray, J; Wilson, E; Campain, R; Graffam, J. & Bink, M. The ‘1-in-4 poll’ is a regular survey of people with a disability in Australia, beginning in 2010. Each survey will deal with a different topic with the first survey focusing on social inclusion. Social inclusion means being included in a society where we feel valued, and can participate in work, social and cultural activities. This conference paper explains how the first survey was developed. This involved looking at information from other research about the social inclusion of people with disability in Australia compared with the general population. Most surveys to date lack information about people with a disability. Our survey draws on questions asked in other surveys and will enable a better understanding of social inclusion for people with disability in Australia. This conference paper will also report on the problems and solutions of developing a survey that is easy to use and meaningful to a large population of people with a disability including people with an intellectual disability. This survey instrument will enable people with a disability to have a say about their social inclusion. There are three versions of the survey including an on-line version that works with a range of assistive technologies, an Easy English version with pictures, and a standard print version. Results from the survey will be shared with government with the aim of improving social inclusion for people with disability The conference paper shows how we have designed a survey that enables a very wide range of people with a disability to give information about their participation in society.

Development of guidelines for caregivers of people with bipolar disorder : a Delphi expert consensus study

Objectives: Close family and friends are often a primary source of support for a person with bipolar disorder. However, there is a lack of
information for caregivers about ways to provide helpful support and take care of themselves. Rates of caregiver burden are high and increase the risk of caregiver depression and health problems. This study aimed to develop guidelines to assist caregivers of adults with bipolar disorder to be informed about bipolar disorder and to support the person without neglecting their own wellbeing.
Methods: The Delphi method was used to assess consensus between international expert panels of 45 caregivers, 47 consumers, and 51 clinicians about what information to include in the caregiver guidelines. Initial online survey items were based on the existing literature. Subsequent surveys included new or reworded items suggested by panel members and items that needed re-rating. Items endorsed by at least 80% of all three panels formed the content of the guidelines.
Results: Nearly 86% of the 626 survey items were endorsed. The items covered information on the illness, treatment, and suggestions on ways caregivers can provide support and take care of themselves in the different phases of illness and wellness, and information on dealing with specific real-life challenges. Although consensus rates were high, meaningful areas of difference between panels were found (e.g., collaboration issues).
Conclusions: The guidelines provide comprehensive introductory information, suggestions, and resources for caregivers. Access to relevant information may help caregivers to cope constructively with the person’s bipolar disorder and their caregiving situation. The content of the guidelines could be used to help formulate a stepped-care approach to supporting caregivers, ranging from basic information and pamphlets to brief training courses and specialized family or caregiver interventions based on need and accessibility.

Being 'fat' in today's world : a qualitative study of the lived experiences of people with obesity in Australia

Objective  To develop an in-depth picture of both lived experience of obesity and the impact of socio-cultural factors on people living with obesity.

Design  Qualitative methodology, utilizing in-depth semi-structured interviews with a community sample of obese adults (body mass index ≥30). Community sampling methods were supplemented with purposive sampling techniques to ensure a diverse range of individuals were included.

Results  Seventy-six individuals (aged 16–72) were interviewed. Most had struggled with their weight for most of their lives (n = 45). Almost all had experienced stigma and discrimination in childhood (n = 36), as adolescents (n = 41) or as adults (n = 72). About half stated that they had been humiliated by health professionals because of their weight. Participants felt an individual responsibility to lose weight, and many tried extreme forms of dieting to do so. Participants described an increasing culture of ‘blame’ against people living with obesity perpetuated by media and public health messages. Eighty percent said that they hated or disliked the word obesity and would rather be called fat or overweight.

Discussion and Conclusion  There are four key conclusions: (i) the experiences of obesity are diverse, but there are common themes, (ii) people living with obesity have heard the messages but find it difficult to act upon them, (iii) interventions should be tailored to address both individual and community needs and (iv) we need to rethink how to approach obesity interventions to ensure that avoid recapitulating damaging social stereotypes and exacerbating social inequalities.

Mobility of people with retinitis pigmentosa as a function of vision and psychological variables

We investigated the mobility performance of subjects with retinitis pigmentosa (RP) as a function of clinical measures of residual vision and psychological variables. We found a highly significant correlation between clinical measures of residual vision and mobility. Pelli-Robson contrast sensitivity and residual visual field together explained 64% of the variance in mobility performance in an indoor shopping mall. We suggest a simple new clinical method of scoring the visual field for predicting mobility performance, the RP Concentric Field Rating. The RP Concentric Field Rating alone explained 60% of the variance in mobility performance. In spite of expectations derived from reading the recent literature, we did not find a significant correlation between psychological variables and mobility performance in a group of subjects with RP.

A longitudinal examination of burden and psychological distress in carers of people with an eating disorder

Purpose
Eating disorders are chronic conditions that require ongoing, high level care. Despite the chronic nature of eating disorders, to date, previous research examining eating disorder carer burden and psychological distress has been cross-sectional only. Therefore, the current study aimed to conduct a preliminary longitudinal examination of the predictors of carer burden and psychological distress for carers of those with an eating disorder.
Methods
A self-report, quantitative questionnaire approach was utilised. Forty-two carers completed three self-report questionnaires over a period of 9 months (initial, 4½ and 9 months) assessing carer burden, psychological distress, carer needs, expressed emotion, coping strategies and social support.
Results
Maladaptive coping, expressed emotion and carer needs were significant longitudinal predictors of carer burden. Carer psychological distress could not be predicted longitudinally.
Conclusions
In order to reduce carer burden, interventions should test whether reducing maladaptive coping strategies, expressed emotion and addressing carer needs lead to lower carer burden and distress.

Internet administration of three commonly used questionnaires in panic research : equivalence to paper administration in Australian and Swedish samples of people with panic disorder

This study assessed the degree of equivalence between paper and Internet administration of three measures of panic and agoraphobia-related cognition and behavior: Body Sensations Questionnaire (BSQ), Agoraphobic Cognitions Questionnaire (ACQ), and Mobility Inventory (MI). Participants were 110 people with panic disorder who had registered for an Internet-based treatment program in Sweden (n = 54) or Australia (n = 56). Participants were randomly assigned to complete the questionnaires via the differing administration formats in a counterbalanced order. Results showed broadly equivalent psychometric properties across administrations, with strong significant intraclass correlations between them, and comparable Cronbach's alpha coefficients. A significant mean difference between administration formats was found for the BSQ only. In contrast to previous research, Internet administration did not generate higher scores than paper administration. No effect was found for order of administration. The findings suggest that each questionnaire can be validly administered via the Internet and used with confidence.

Information needs of family carers of people with diabetes at the end of life: a literature review

Background:
Recent research identified the issue that family carers of people with diabetes at the end of life (EOL) did not receive sufficient information to enable them to help their relative manage their diabetes at the EOL.

Aim:
The aim of the current study was to undertake a literature review to identify the information needs of family carers of people with diabetes at the EOL.

Method:
A comprehensive review of the literature was conducted by searching the following databases: CINAHL, PubMed, PsychInfo, Scopus, and SocINDEX. The grey literature was also searched for papers relevant to the aim. All study designs were included. A content analysis of relevant papers was undertaken to identify themes.

Results:
Sixteen of the more than 300 papers identified addressed the information needs of family carers of people with diabetes at the EOL and were included in the review. Five key themes were identified from the papers reviewed: (1) performing diabetes care tasks, (2) focus of care, (3) blood glucose management, (4) EOL stages, and (5) involving patients and family carers in decisions about diabetes care. Most of the 16 papers represented the views of health professionals and focused on the need to provide information about the medical aspects of diabetes management.

Conclusions:The review suggests further research is needed to identify the information needs of family carers of people with diabetes at the EOL to enable interventions to be developed to support the family carers and meet their unique information needs.