Participation in decision-making and inclusion in the important matters of one’s life are upheld as measures of equality and indicators of the moral status of individuals in liberal democratic societies. To some extent, the status of children in western societies is a contested question, and hence, the nature of children’s contributions to decisions is a matter of debate. Evidence suggests that in spite of an apparent societal commitment to children’s participation in the important matters of their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation of one group of children—chronically ill school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers. In this study, children’s participation in health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children’s opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance of children’s voices); and the standing achieved by children’s views within decisional processes (the relevance of children’s voices). The interplay of adult authority and children’s agency at the nexus of the resonance and relevance of children’s voices created certain participatory spaces, depicted as moral and social realms variously characterized by children’s silence, children’s tangible expression, adult imposed authority, or adult assumed responsibility. The findings of this study demonstrate a need to re-think our concept of children’s participation, and point to the importance of developing a more relational and contextual understanding of how chronically ill children may contribute to important matters in their lives. The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children’s health care encounters, toward a goal of creating conditions where possibilities for children’s participation are optimized.

Meeting the health care needs of people with chronic conditions presents one of the greatest challenges for 21st century health care system renewal. Appropriate redesign of health care delivery with this complex patient population in mind requires information from many sources. Although much is known about the patient experience of chronic illness much less is understood about how patients navigate their health care delivery context. The purpose of this qualitative study was to examine the point of view of patients dealing with multi-morbidity. These people have a unique understanding of how health care delivery links across time, place, and settings because of the care they require for their multiple chronic conditions. An interpretive descriptive design was used to examine patient navigation from the perspective of 20 adult patients with chronic kidney disease, and co-existing diagnoses of diabetes mellitus and/or cardiovascular disease. The findings generated from iterative, constant comparative analysis add important patient perspectives about health care system navigation. From the consumer perspective health care navigation is challenging, requiring (a) ongoing discovery about the complex social structures that make up the health care system, and (b) learning how to strategically use this knowledge to manage the health care system. The findings highlight the disjunctures and misalignments in the health care delivery system, the cumulative health care-related burden of multiple chronic conditions for consumers, and consumer concerns about subtle inequities in the health care system. As health care renewal efforts gain momentum new knowledge from the perspective of consumers, such as that captured in this research, is important. The consumer perspective provides a valuable opportunity for stakeholders in health care policy- and decision-making to contextualize and make greater sense of the information used in making decisions about health care service delivery for vulnerable populations, like patients with multiple chronic conditions.

Systemic lupus erythematosus (SLE) is a relatively rare autoimmune disease with no known aetiology or cure. In addition to numerous physical symptoms, those living with SLE have also been shown to experience significant emotional and psychosocial difficulties. There has been little psychological research into SLE despite the rapidly increasing interest in health psychology and quality of life issues over the last two decades. One such issue that has commanded particular attention is that of cognitive bias in individuals with chronic pain and/or chronic illness. Cognitive bias toward illness-related information is theorised to indicate the presence of an illness self-schema, and is a valuable tool of investigation as it permits access to a level of cognitive structure that is inaccessible via self-report instruments. The primary focus of the present study is to investigate recall bias for pain- and illness-related words in SLE patients. This bias is explored relative to the recall of neutral words and depression-related words, and also relative to the responses of rheumatoid arthritis (RA) patients and healthy controls. Two hypotheses are proposed: firstly, that bias is related to disease activity; and secondly, that bias is related to the combination of illness and depression. The findings provide support for the second hypothesis, with the additional caveat that the nature of the pain/illness stimuli used is important in determining the presence of cognitive bias. No recall bias for illness-related words as a whole was found in any of the groups, nor was there evidence of a recall bias in the SLE and RA patients when they were divided according to depression status. However, when the illness words were examined separately according to �sensory pain� and �disability-related� words, a clear bias for disability words was found in the depressed patient group. It is concluded that there is a relationship between depression in chronically ill individuals, and the way in which such individuals process disability-related words. In accordance with the schema-enmeshment model (Pincus & Morley, 2001), it is suggested that both a pain-schema and an illness-schema exist, and it is when these two schemas become enmeshed with the self-schema that depression occurs in chronic pain/chronically ill patients. The cognitive bias assessment paradigm adopted in this study-one that is typically used in similar investigations-is lengthy, requires sophisticated equipment and can be difficult to interpret on an individual level. The present study investigates the relationship between cognitive biases in SLE patients and a recently-developed task, PRISM, which appears to symbolise the enmeshment of illness-, pain- and self-schemas. Analyses confirmed that recall of negative illness words was the only independent predictor of PRISM scores. This suggests that PRISM, a quick and easy task to administer, may have considerable usefulness as a clinical tool to assess information relevant to the enmeshment of illness- and self-schema. A greater understanding of schema and the processing styles of chronically ill patients will allow for more effective psychological treatment such that quality of life can be improved.

The purpose of this study proposal is to examine the peer relationships of adolescents with chronic conditions, particularly as a result of spending less time at school and socializing with peers, and more time at home or in the healthcare system. Participants will be 50 adolescents with chronic conditions, 50 healthy adolescents attending regular schools, and 50 homeschooled adolescents. They will complete a variety of questionnaires relating to activity restriction, best friendship quality, number of friends, peer-group attachment, relationships with selected adults, and parent-child relationships. Information about the chronic condition and school attendance will also be collected. It is predicted that despite experiencing a high quality best friendship, adolescents with chronic conditions will have fewer friends and worse peer-group attachment. There is also expected to be an inverse relationship between both activity restriction and absenteeism and peer-group attachment and number of friends. This study proposal has several implications for healthcare practitioners, school administrators, and parents: particularly, that more should be done to integrate adolescents with chronic conditions into schools and social activities.

abstract: Epilepsy is the most common chronic neurological condition in children and can have a significant negative impact on education. The current study aimed to examine factors that may influence the likelihood that a teacher will contact the parents of a student with epilepsy for information regarding the disorder and its impact within the school environment. Specific variables of interest included teacher knowledge about epilepsy and confidence when teaching at student with epilepsy, parent perceived knowledge about epilepsy, and parent socio-economic status. Variables were assessed through the previously developed Teacher Epilepsy Knowledge and Confidence Scales (TEKCS) as well as case vignettes. Overall findings suggest that teachers provided with a letter from a parent of a student with epilepsy are highly likely to contact the parent for more information regardless of the above mentioned factors. Additional supplemental analyses replicated previous findings indicating that special education teachers and teachers currently teaching a student with epilepsy possess more knowledge and confidence than general education teachers and those teachers who are not currently instructing a student with epilepsy. In addition, this study also examined the specific types of information teachers sought from parents. Study limitations, implications for practice, and future research directions are discussed. / Dissertation/Thesis / Ph.D. Educational Psychology 2013

Fibromyalgia is a chronic illness characterized by debilitating symptoms such as unpredictable widespread pain, fatigue and migraines. Social support can be a crucial factor in illness management for individuals living with this medically contested, stigmatized and marginalized illness. For many, social media is a significant aspect of their daily reality and in this social space, new forms of relationships and communities have begun to form. This study explores the ways in which a new form of support community for fibromyalgia develops and maintains itself on the social media platform Instagram. A mixed-method research design incorporating both a content and semiotic analysis of Instagram posts as well as interviews with participants utilizing the app was conducted to shed light on the ways in which the relatively new phenomenon of sharing illness experience and support occur on Instagram. / Graduate

This thesis follows a paper based format where papers 1 and 2 are stand-alone papers prepared for submission to the Journal of Pediatric Psychology. The relevant submission guidelines are included in the Appendix. Paper One: The purpose of this systematic review was to assess the effects of family-centred interventions for children and adolescents with Type 1 diabetes and review the bias associated with included studies. The review summarises the outcome measures which consisted of HbA1cs, hospital admissions for diabetic ketoacidosis (DKA), adherence, and family relationships including diabetes-related conflict. Research studies that were randomized controlled trials were selected to maximise the quality of information reviewed. Electronic searches of the OVID database using MEDLINE, PsycINFO, EMBASE, and CENTRAL were searched from their start dates until May 2012. Nine studies were located and assessed with the Cochrane risk of bias tool. Two studies were excluded from further analysis due to serious concerns about bias of their results. The remaining 7 had their findings summarised in a narrative statement, which indicated that family-centred interventions significantly improved HbA1cs, reduced DKA admission rates, improved adherence, and enhanced family relationships including reduced conflict. Family-centred interventions appear to be effective in enhancing health and psychological outcomes. The interventions however, were mainly in clinical settings and delivered by trained professionals. Given the importance of the family relationships in diabetes control, a need exists for interventions to have a more flexible setting and method of delivery, remain viable and demonstrate sustainability. Paper two: Clinic based interventions in type 1 diabetes have shown improvements in family relationships and metabolic control, but have limited reach. Therefore, a self-directed intervention was evaluated. Recruitment occurred through national advertising with diabetes charities, and the randomized controlled trial was conducted via online data collection. Parents of adolescents (aged 11-17) with diabetes were randomized to usual care (n = 37) or intervention (n = 42) using computerised block randomization, with researchers blinded to block size. The 10 week intervention involved the Self-directed Teen Triple P (Positive Parenting Program) workbook (10x1hour modules) and Chronic Illness tip sheet. Primary outcomes of diabetes-related family conflict and parenting stress were assessed pre and post-intervention. Intention-to-treat analysis was undertaken (n = 79), due to increased attrition from the intervention group. Intervention significantly improved diabetes related conflict, but not parental stress, compared to usual care. Followup analyses will assess maintenance effects and impact on metabolic control. Paper three: This paper was a Critical Evaluation, the purpose of which was to consider the findings from both papers, highlight additional and unexpected outcomes, place the research in the wider context, explore limitations of the thesis, and to discuss implications for future work.

Participation in decision-making and inclusion in the important matters of one’s life are upheld as measures of equality and indicators of the moral status of individuals in liberal democratic societies. To some extent, the status of children in western societies is a contested question, and hence, the nature of children’s contributions to decisions is a matter of debate. Evidence suggests that in spite of an apparent societal commitment to children’s participation in the important matters of their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation of one group of children—chronically ill school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers. In this study, children’s participation in health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children’s opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance of children’s voices); and the standing achieved by children’s views within decisional processes (the relevance of children’s voices). The interplay of adult authority and children’s agency at the nexus of the resonance and relevance of children’s voices created certain participatory spaces, depicted as moral and social realms variously characterized by children’s silence, children’s tangible expression, adult imposed authority, or adult assumed responsibility. The findings of this study demonstrate a need to re-think our concept of children’s participation, and point to the importance of developing a more relational and contextual understanding of how chronically ill children may contribute to important matters in their lives. The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children’s health care encounters, toward a goal of creating conditions where possibilities for children’s participation are optimized. / Applied Science, Faculty of / Nursing, School of / Graduate

Meeting the health care needs of people with chronic conditions presents one of the greatest challenges for 21st century health care system renewal. Appropriate redesign of health care delivery with this complex patient population in mind requires information from many sources. Although much is known about the patient experience of chronic illness much less is understood about how patients navigate their health care delivery context. The purpose of this qualitative study was to examine the point of view of patients dealing with multi-morbidity. These people have a unique understanding of how health care delivery links across time, place, and settings because of the care they require for their multiple chronic conditions. An interpretive descriptive design was used to examine patient navigation from the perspective of 20 adult patients with chronic kidney disease, and co-existing diagnoses of diabetes mellitus and/or cardiovascular disease. The findings generated from iterative, constant comparative analysis add important patient perspectives about health care system navigation. From the consumer perspective health care navigation is challenging, requiring (a) ongoing discovery about the complex social structures that make up the health care system, and (b) learning how to strategically use this knowledge to manage the health care system. The findings highlight the disjunctures and misalignments in the health care delivery system, the cumulative health care-related burden of multiple chronic conditions for consumers, and consumer concerns about subtle inequities in the health care system. As health care renewal efforts gain momentum new knowledge from the perspective of consumers, such as that captured in this research, is important. The consumer perspective provides a valuable opportunity for stakeholders in health care policy- and decision-making to contextualize and make greater sense of the information used in making decisions about health care service delivery for vulnerable populations, like patients with multiple chronic conditions. / Applied Science, Faculty of / Nursing, School of / Graduate

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