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    One parent’s advice to another : an exploration of self-care for parents of children with high-need disabilities and the development of a psychoeducational resource : a thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Clinical Psychology at Massey University, Manawatū, New Zealand
    (Massey University, 2020) Oskam, Jana Aria Dunlop
    Currently over 95,000 children are affected by a disability in New Zealand (NZ), making up 11% of the child population (Statistics New Zealand, 2013). Receiving a childhood disability diagnosis can be a life-changing event for the entire family. As current societal structures require parents to assume unforeseen caregiving roles (that typically last the course of their child’s lifetime), parents as informal caregivers make up a significant sector within NZ. Nevertheless, the dominant approach to research in the field of childhood disability has been based on the assumption that informal caregiving results in adverse outcomes for parents. Consequently, existing research has largely focused on the well-documented negative impact of caregiving for parents and their families. Although evidence suggests that effective self-care may act as a mediator against caregiver stress, few studies have approached informal caregiving from a positive psychology and health-promotion perspective. However, it can be argued that by adopting a positive health promotion perspective, we can improve understanding on how best to promote wellbeing for parents, and consequently, their children and families as well. Through two studies, this thesis explored the experience of self-care and wellbeing for parents of children with high-need disabilities (HND). Study One achieved this by interviewing 11 parents of children with high-need cerebral palsy or autism. Thematic analysis found that participants typically experienced and enacted self-care in four key areas, including parents’ Formal Supports and Resources, Informal Relationships, Values and Goals, and their use of Time. In line with a transformative framework, Study Two developed a psychoeducational resource, aimed at enhancing parents’ self-care and perceived wellbeing, by integrating findings from the first study with existing literature. Preliminary evaluation of the resource booklet was achieved by 14 participants completing a written questionnaire to obtain parents’ feedback. Descriptive statistics and thematic analysis of participants’ responses identified that the booklet appears to capture parents’ experiences of self-care when raising a child with HND. Two key themes included participants’ Positive Remarks and Ideas for Change. Overall, findings suggest that despite caregiving challenges, there are effective self-care strategies which parents use to mitigate these risks and improve wellbeing.
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    How do people with multiple long-term health conditions experience the self-management approach to health care? : a thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy, Massey University, Palmerston North, New Zealand
    (Massey University, 2017) Francis, Helen Catherine
    The health system in New Zealand has devised approaches intended to meet the needs of people with long-term conditions (LTCs) based on the international theories of the Chronic Care Model (CCM) and a self-management framework (Bodenheimer, Wagner, & Grumbach, 2002b; Lorig, 1993; Wagner, 1998). LTCs and multimorbidity are socially patterned so often people with several LTCs are also contending with chaotic lives as well as the implications of their Illnesses. The self-management framework is based on the assumption that everyone has the agency or freewill to make the daily decisions that would benefit their health and ignores the powerful effect of social context. Because the behaviours recommended to optimise health are so entwined with a person’s social context, LTCs are particularly sensitive to the social determinants of health. This multiple case study follows the complex lives of sixteen people with several significant long-term health conditions using the theories of both Cockerham (2005, 2010, 2013b) and Link and Phelan (1995, 2010) to explore their experiences. Ongoing contact with the patient-participants comprised two interviews, four-weekly contacts and interviews with their primary health care clinicians. The patient-participants’ stories reveal complex, entangled lives marked by loss, poverty and daily challenges. They are significantly constrained by the overwhelming social contexts of their lives and reduced to survival mode by their cumulative losses across the four domains of the Whare Tapa Wha model. Personal agency is neither a choice nor readily achieved. They are left too exhausted to work their way through a health system that does not recognise their needs, empower them or compensate for their lack of energy. The weary patient-participants in this study bear little resemblance to the idealised expert patient of the self-management framework. Clinicians are left manoeuvring to compassionately and pragmatically support the patient-participants as best they can within an unhelpful system. The findings however do surface examples of care that are valued by both patient-and clinician-participants that sit outside the self-management approach. These valued aspects are explored alongside the harm reduction, recovery and palliative models of care. These all offer contributions towards an approach that would optimise the quality of life for people with significant, multiple LTCs. An exploration of this re-awakened approach to care is described. Care that is constricted self-management approach could wrap around the patient and support them to use their residual agency in a direction of their choosing. Clinicians would be released from their current programmed response be able to more fully utilise their clinical expertise. Clinicians and patients would have the freedom to be more pragmatic around quality of life and the issues that matter to the individual with LTCs.
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    Living a healthy life : an evaluation of a self-management for chronic conditions course, Arthritis New Zealand : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science (Health Psychology) at Massey University
    (Massey University, 2004) Pretorius, Charlene
    Chronic disease management is a major challenge for health care systems in the developed world. Self-management has the ability to help improve health status, health behaviours and reduce health care utilisation for people with chronic disease. In this exploratory before-after cohort study, questionnaires were distributed to people with chronic disease attending a self-management course offered by Arthritis New Zealand. Ninety-four people at baseline, and at six months, 67 people, completed eight health status, four health behaviour, one self-efficacy, and six health care utilisation measures. The 67 participants at six months also completed seven course evaluation measures in addition to course delivery, social support, course barrier and course attendance measures. The relationship at onset between self-efficacy and health status was analysed using a stepwise regression. Self-efficacy, which accounted for 27% of variance, was significantly related to health distress and to the energy levels of participants. To determine the relationship between self-efficacy and self-management behaviours at baseline, standard multiple regressions were run. Self-efficacy was unrelated to the self- management behaviours of the participants at the course onset. To analyse the mediation effect of self-efficacy on health status a stepwise regression was run, while holding self-efficacy constant. Self-efficacy at six months explained 42% of the variance in baseline self-efficacy, after controlling for baseline self-efficacy in the second model, self-efficacy at six months was significantly related to perceived illness intrusiveness and accounted for an additional 58% of the variance. Two hierarchical stepwise-regressions assessed the mediation effect of self-efficacy on self-management behaviours. Self-efficacy at six months accounted for no additional variance in the participants' self-management skills. Paired t-tests and Wilcoxon matched-pairs signed ranks measured changes in health status, self-efficacy, health behaviours and health care utilisation. No significant improvements occurred in health status. Significant improvements occurred in four health outcomes. Independent t-tests and the Mann- Whitney tests identified significant differences between gender, age and location with health status, health behaviour and health care utilisation outcomes at baseline and at six months. The process evaluation of the course showed general satisfaction. Explanations for the results are offered, limitations of the study are highlighted, and suggestions for future chronic disease self-management research are proposed.