This study focuses on the experiences of the relationship between adolescents with asthma and their parents. Even though asthma has been described as the most common chronic illness in adolescence, very little research has been undertaken on the combined impact of asthma on the parent-adolescent relationship. The goal of this study was to explore and describe how adolescents with asthma and their parents experience their relationships with each other. The research was conducted from a qualitative research approach and followed a case study design. This allowed the researcher to develop an understanding of the meaning that the participants gave to their life experiences. A total of four families consisting of one adolescent and two parents each was purposefully selected and obtained with the assistance of a medical practitioner specialising in pulmonary disease in Bloemfontein. The adolescents had to be between the ages of 14 and 18, formally diagnosed with asthma by a medical practitioner and currently be taking medication prescribed by the relevant practitioner. In addition they had to be living with both of their biological parents in the same household. The qualitative data were gathered in the form of individual reflective journals, semistructured group interviews and unstructured individual interviews. The researcher‟s objective was to understand and interpret the meanings the participants gave to their own experiences, which were further done through field notes, member checking, and drawings participants made in the reflective journals. The interviews were audio-recorded and transcribed by the researcher. Thematic data analysis was used to transform the journal entries and transcribe data into meaningful information. The drawings made in the journals were analysed with the assistance of participants, thus a shared analysis. The Constant Comparative method was used to identify themes related to the research question from the researcher‟s field notes. The principles and strategies for ensuring the trustworthiness of the data were done through crystallisation. The findings of the study revealed that adolescents and their parents experienced mixed emotions in terms of asthma and the impact asthma had on their relationships. The adolescents‟ and parents‟ beliefs concerning the topics of the research were often contradictory. It was evident that they experience specific and often contrasting roles and responsibilities regarding the management of asthma in the parent-adolescent relationship, and most families had to make significant adjustments in their family lifestyle and relationships as a result of the adolescents‟ asthma. / MA (Psychology), North-West University, Potchefstroom Campus, 2014

Problem statement: As a result of the aging population, the number of people living with chronic disease has increased to almost 50% (CDC, 2004). Two of the main goals in treating patients with chronic diseases are to provide seamless care from setting to setting and prevent disability in the older adult. Many have proposed the use of electronic personal health record systems (PHRs) in the self-management process, but adoption remains low. The purpose of this research was to validate and test an explanatory model of the barriers and facilitators to older adults' adoption of personal health records for self-managing chronic illnesses. The long range goal of the research is to use the explanatory model to develop interventions that will maximize the facilitators and minimize the barriers to adoption. Methods: A preliminary attempt to capture the essential barriers and facilitators that predict adoption of PHRs among older adults with chronic illness was synthesized from the literature. In Phase One of the study, the model was integrated from existing literature and validated using a Delphi method. In Phase Two of the study, the model was pilot tested and refined for future investigations. Findings: The results of this study validated the Personal Health Records Adoption Model (PHRAM) and a preliminary instrument that measured barriers and facilitators to the adoption of PHRs in older adults who are self managing chronic illness. Additional findings indicate that while seniors are seeking options to manage their health and have expressed an interest in using Internet-based PHRs, they may require assistance to gain access to PHRs. Implications: The potential for PHRs to increase patient autonomy and reduce for disability and the resulting negative health consequences needs further investigation as we move into the next era of healthcare delivery. The results of this study provided the foundation for continued theoretically-based research in this area.

This thesis explores Turkish migrants’ practices of diabetes care in Germany. Health statistics frequently identify minority groups as vulnerable to chronic illness and Turkish-origin Germans are said to be more likely to suffer from type 2 diabetes than Germans or Turks in Turkey. Anthropological studies on marginal population groups with diabetes explore experiences of social suffering and inequality that influence such high illness prevalence, or investigate how conflictual lay beliefs and medical encounters affect illness care. Those studies that analyse active diabetes patient and healthcare practices concentrate on the majority population. Drawing on ethnographic fieldwork in Berlin from September 2006 to September 2007, this thesis examines how Turkish Berliners actively engage in diabetes care, and thus joins two themes seldom connected: illness practices and marginality. Initial interviews with healthcare professionals alluded to a Turkish migrant patient group living in deprivation and immobilised by high illiteracy rates, lacking language skills and health knowledge. Despite such experience of marginality, ethnographic exploration revealed that informal diabetes care, for example through a Turkishlanguage self-help group, is nonetheless individually and collectively negotiated where formal care is inadequate. On the one hand, the thesis investigates practices of diabetes control in learning, monitoring and manoeuvring diabetes. Rather than representing the common image of the inert, disadvantaged migrant patient, Turkish Berliners of the self-help group engage in deliberate “tactics of diabetes control” to make their chronic illness experience habitable. On the other hand, the thesis explores how “diabetes among Turkish-origin Berliners” can be a form of sociality, political activism and economic enterprise that involves many social actors not only patients and their healthcare professionals, in order to fill a provision gap.

Objective: To complete an integrative review of the studies on pediatric chronic illness utilizing the Children's Hope Scale to determine the association between hope and thechronically ill child. Method: A comprehensive review of PubMed, PsycINFO, Academic Search Complete, CINAHL, The Cochrane Library, ProQuest, and Dissertations Theses was completed. Titles were reviewed, selected abstracts were then assessed, and full papers were obtained. Results: Ten studies were found which met the specified inclusion criteria: participants less than or equal to 19 years of age, an illness of more than three months in duration, and hope measured by the Children's Hope Scale. The studies found some support for the positive effect of hope for children with chronic illness, but more research needs to be done with larger samples. Conclusion: This integrative review supports the positive impact of hope on the chronically ill child and the need for additional research on the role of hope in the chronically ill child.

Background: Mindfulness-based cognitive therapy (MBCT) is a promising new alternative to anti-depressant medication (Kuyken et al., 2015) and whilst some qualitative studies have explored participants' experiences of MBCT, none yet have explored experiences of participants who are considering coming off their antidepressant medication alongside MBCT or how patients experience change in relationships with self, others and illness. Aim: To examine MBCT participants' experience of change across 24 months, particularly in relation to change in views of their self and their illness over time. Method: Thematic analysis of in-depth retrospective interviews with 42 participants, two years after attending an 8 week MBCT group with an invitation to taper their antidepressant medication (ADM). Each participant took part in one retrospective interview which was semi-structured and focused on experiences of MBCT and ADM over the previous two years since attending an MBCT group and how these have impacted on a change in self and experience of illness. Findings and conclusion: Four over-arching themes were found: taking control, relationships (with self, other and illness), rebuilding the self and shifts in perspective. The findings in the current study are very similar to those found in transformation in the physical chronic illness literature (e.g. Paterson et al., 1999). Perhaps MBCT could be the challenge which lead patients suffering from chronic depression towards change and creates a context in which patients can consider self and identity.

Thesis advisor: David Karp / This project focuses on a case study of a woman with the rare autoimmune disease Scleroderma. It is supplemented with data from in-person interviews and online support groups. The study explores the way a chronic illness (particularly, Scleroderma) impacts elements of identity. / Thesis (BA) — Boston College, 2013. / Submitted to: Boston College. College of Arts and Sciences. / Discipline: Sociology Honors Program. / Discipline: Sociology.

The internalizing and externalizing dimensions of psychopathology have been shown to effectively identify groups that are at higher risk for experiencing certain forms of psychopathology. Many studies have shown that chronic physical health conditions are a risk factor for psychological distress, yet there has been very little research examining the association between chronic physical health conditions and dimensional models of psychopathology to date. In the present study we examined the factor structure of internalizing and externalizing symptoms in a sample of adults with postural orthostatic tachycardia syndrome (POTS; n =172) and in a sample of adults without any chronic illness diagnoses (n = 199). Confirmatory factor analyses suggested that psychological distress in individuals with POTS can be effectively characterized by an internalizing dimension composed of distress and fear subcomponents as well as an externalizing dimension. Tests of measurement invariance allowed for the examination of latent means, which showed that individuals with POTS tend to have higher scores on the internalizing dimension and lower scores on the externalizing dimension than healthy controls. Regression analyses suggested that within the sample of people with POTS, those who were more accepting of their illness and had higher health related quality of life tended to have lower scores on the internalizing dimension. Findings suggest that individuals with POTS are at heightened risk for experiencing internalizing symptoms of psychopathology. A dimensional conceptualization of psychopathology seems like an effective way to identify symptoms of psychopathology that are separate from symptoms of autonomic nervous system dysfunction.

Individuals with chronic illness often face the added burden of stigma associated with their chronic conditions. Stigma has been associated with fewer psychosocial resources of social support, self-esteem, and self-compassion, as well as less access and usage of mental and physical healthcare. However, it is unclear whether stigma experiences vary by age of the individuals with chronic illness. It was hypothesized that emerging adults would report more perceived stigma, fewer psychosocial resources and less access to medical treatments. It was additionally hypothesized that perceived stigma would mediate the association between age and outcomes. 197 participants completed an online survey using Survey Monkey. Results of multiple regression analysis testing for mediation did not support hypotheses. In fact, emerging adults reported easier access to treatments than older adults. Post-hoc analyses were conducted and revealed that among emerging adults – but not older adults – perceived stigma was significantly related to less access to medical treatments. Thus, age may moderate the impact of stigma of chronic illness on access to healthcare in individuals with chronic illness, rather than predict more or less stigma of chronic illness. This indicates that in spite of easier access to care for emerging adults, increased stigma might interfere with their seeking of that care. Future studies should examine the impact of stigma on emerging adults’ treatment access.

The purpose of this study was to understand the cultural context in which Amish families manage the care of a child with a chronic illness and how it frames the interface with the larger health care delivery system outside their communities. The aims of this study were to describe Amish families' understanding of their children's chronic illnesses, and to describe Amish families' health management and health seeking behaviors for their children within the Amish community and with health services outside their community. Ethnographic research methods were used to paint a cultural portrait of individuals and families, using data sources such as formal and informal interviews with participants, participant observations in the Amish community and family homes, Amish newspapers, and direct observations in health care clinic settings. Informants in this study included Amish families, Amish community members, and health care providers to illustrate commonalities and differences in perspectives on the chronic illness management for children. The study made use of ethnographic analysis, guided by thematic and cultural narrative techniques, to describe Amish family management for children with chronic illnesses in a way that pulls forward how their cultural background is involved in their behaviors and experiences. The results of this study highlight several points: a) the Amish community influences how families understand and appraise concern for their children's illnesses, and families prioritize children's function as a measure of health/illness and see children as ultimately in the hands of God; b) minimal entanglement with the health care community allows for children to be as normalized as possible into the everyday life of the Amish community; c) families prefer to use home remedies to lower costs, potentially prevent the need for health services, and alleviate their child's symptoms in their own homes and community; d) when seeking health services, families prefer treatments they can manage in their homes, health care providers who are knowledgeable about the use of Amish home remedies for their children, and the ability to make health decisions in consideration of the impact to the greater Amish community. To provide culturally competent care for Amish children, this study describes provider competencies needed to understand and accommodate the child's family cultural orientation, values, beliefs, and health care practices into cooperative care planning. One of the most significant attributes for providers to understand when working with Amish families is their collectivist perspective. As collectivists, these families may place the ultimate Amish community goals of believing in God, separation from society, and traditional lifestyle choices over their own when caring for children with chronic illnesses. This is a difficult competency for health care providers who function within a larger medical legal system that requires the placement of individuals above other considerations. It is at the intersection of these two cultures that this study is situated.

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.