The purpose of this phenomenological enquiry was to gain a deeper understanding of what it means to be an adolescent living with a sibling who has a chronic illness. Children’s chronic illness has an impact on well siblings and research findings have been inconsistent as to what effect this has on them. Semi-structured interviews using photo-elicitation were conducted with eight adolescents who had siblings with a chronic illness. Through the use of interpretive phenomenology, three themes emerged: Making Sense over Time, Getting Away from It All, and Creating Common Ground with Siblings and Family. The adolescents were able to make sense of chronic illness over time by asking parents questions about the illness and attending support groups. Siblings found normalcy in their lives by getting away to spend time alone or connecting with friends.

UK Health policy over the past decade has sought to accelerate established trends of moving services for type 2 diabetes into primary care. This has aimed to make services more accessible and to enable patients to benefit from having their diabetes care incorporated into the “generic and holistic” approach of primary care. However, in 2004 the introduction of a new General Medical Services (nGMS) contract signalled a change in primary care by linking clinical targets to financial rewards on a larger scale than ever before. Diabetes is one of nineteen financially incentivised clinical areas under the nGMS contract (2006). This thesis considers how these health policies may have influenced the organisation and experience of providing and receiving care for type 2 diabetes in Scottish primary care settings. It also aims to bridge two usually separate areas of sociological interest: how health professionals interpret and implement policy, and how patients experience and perceive chronic illness and their health care. A multiple case study approach was employed in order to compare and explore the organisation and experience of type 2 diabetes care associated with three general practices of differing size and location. In each case study a period of non participant observation was undertaken and in-depth interviews conducted with health professionals and their type 2 diabetes patients. Analysis of these data shows that multiple factors influence the way diabetes care is organised and experienced in primary care. I argue that the local context of interpersonal relationships of trust, professional identities and role expectations influence both the organisation of care and the way patients interpret that organisation. Moreover, the meanings patients attribute to the local organisation of diabetes care can inform their perceptions of their condition and influence their desire to be involved in diabetes management.

Thesis advisor: Callista L. Roy / Purpose: The purpose of this research was to address the gap in the literature related to frail older adults' experience of participating in clinical trials. Background: Frail older adults are generally underrepresented in the population of research volunteers from which evidence-based guidelines are derived. To improve care for frail older adults, research must be expanded to specifically target this population. Most of the users of healthcare today are greater than 65 years old, use more health care services than any other age cohort and suffer from coexisting illnesses for which they take several prescribed medications. Since the number of elders is increasing within the general population, it is important to reach a more thorough understanding of frail older adults' experience. Acquiring a better understanding of their experience will give the investigator more insight into barriers of recruitment, retention, and factors affecting elders' decision to participate in research. Method: Using a qualitative descriptive approach involving semi-structured interviews, a cohort of participants age 65 and older was asked about their experience of participating in research studies. Data analysis used an interpretive paradigm involving the methods of Miles, Huberman, and Saldana (2014). Results: Participants identified the main factors influencing their decision to participate as the opinions and encouragement of family members with the strongest influence being a recommendation from their doctor. Participants were varied in the emotions evoked by their participation in the study procedures. The majority of participants stressed how important it was to them to receive feedback in the form of results of studies in which they had participated. The majority of participants stated that receiving feedback or research results was the exception. Conclusions: Data generated from this study related to the experience of frail elder participation in clinical trials will be useful in designing future clinical trials to be more inclusive of this patient population. Keywords: frail elders, research participation, clinical trials, chronic illness, qualitative, multmorbidity / Thesis (PhD) — Boston College, 2015. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

The purpose of this exploratory study was to investigate whether personal creative activity predicted perceived stress in men living with a chronic physical illness. Personal creative activity was measured with the Creative Achievement Questionnaire (Carson, Peterson, & Higgins, 2005), select questions from the Flow Questionnaire (Collins, 2006), the Everyday Creativity Questionnaire (Ivcevic & Mayer, 2009) and the Creative Behaviour Inventory (Hocevar, 1979). Perceived stress was measured with the Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983). Sequential Multiple Regression was used to assess the relationship between personal creative activity and perceived stress levels of males with chronic illness. It was hypothesized that there would be a negative relationship between men‟s personal creative activity involvement and their perceived level of stress; that is, higher personal creative activity scores would be associated with lower perceived stress levels. This relationship was expected to be demonstrated by all men regardless of their diagnosis.<p> Participants included 139 males with chronic illness (mean age: 50 years). Findings indicated that personal creative activity was not related to perceived stress. However the participants reported being involved in many different personal creative activities not included in the four creative measures, which may help explain the low scores on the creativity measures that may have skewed the data and resulted in low correlations. Age and number of symptoms were related to perceived stress. As the participants aged, their perceived stress decreased; and the more symptoms they reported, the higher their perceived stress. The strengths and limitations of the current study are outlined, along with implications for future research and practice. Future research is needed to further examine the relationship between creativity and perceived stress in men with chronic illness as well as to develop creativity measures that include more male-oriented activities.

This study explored the lived experiences of chronic illness during adolescence and emerging adulthood. Previous research has indicated that chronic illness can result in disruptions to people’s lives because of the related physical challenges and social stigmas. These challenges may be particularly salient in adolescence and emerging adulthood because of pressure to “fit in” with peers, cultural associations between youth and health, and limited experience adjusting to difficult life events. However, little is known about the impact of having a chronic illness on the lives of young people. This study addresses the over-arching question: how and when can chronic illness become a problem for young people in their everyday lives (i.e., leisure, relationships, school and work) and what types of adjustments are made as a result? The final sample of participants in this study consisted of 29 young people (23 women, 6 men) each of whom was living with a chronic illness. Unstructured in-depth interviews were conducted with 26 participants, as well as 3 semi-structured electronic interviews. Data were analyzed using a grounded theory approach. The findings suggested that the main challenge for young people with illness is achieving a desired identity. Being able to achieve a desired identity was tied to three processes. These processes included participants’ ability to manage their appearances and reputations, accomplish desired activities, and experience positive relationships. Although most adolescents and emerging adults to some degree face these same challenges in attempting to achieve desired identities, experiences associated with chronic illness can intensify these challenges. Further, the factors that contribute to them being challenging seem to be unique to those living with a chronic illness. The findings also suggested that participants’ experienced chronic illness in varied ways. Many of the adjustments and factors that contributed to these differences, including how people’s experiences changed over time are identified. These adjustments and factors are similar to the coping strategies and constraint negotiation strategies identified in previous research at a generic level. The specific ways in which young people with chronic illness are able to achieve identity is also described, including differences within the experiences of participants.

The purpose of this exploratory study was to investigate whether personal creative activity predicted perceived stress in men living with a chronic physical illness. Personal creative activity was measured with the Creative Achievement Questionnaire (Carson, Peterson, & Higgins, 2005), select questions from the Flow Questionnaire (Collins, 2006), the Everyday Creativity Questionnaire (Ivcevic & Mayer, 2009) and the Creative Behaviour Inventory (Hocevar, 1979). Perceived stress was measured with the Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983). Sequential Multiple Regression was used to assess the relationship between personal creative activity and perceived stress levels of males with chronic illness. It was hypothesized that there would be a negative relationship between men‟s personal creative activity involvement and their perceived level of stress; that is, higher personal creative activity scores would be associated with lower perceived stress levels. This relationship was expected to be demonstrated by all men regardless of their diagnosis.<p> Participants included 139 males with chronic illness (mean age: 50 years). Findings indicated that personal creative activity was not related to perceived stress. However the participants reported being involved in many different personal creative activities not included in the four creative measures, which may help explain the low scores on the creativity measures that may have skewed the data and resulted in low correlations. Age and number of symptoms were related to perceived stress. As the participants aged, their perceived stress decreased; and the more symptoms they reported, the higher their perceived stress. The strengths and limitations of the current study are outlined, along with implications for future research and practice. Future research is needed to further examine the relationship between creativity and perceived stress in men with chronic illness as well as to develop creativity measures that include more male-oriented activities.

Chronic illness impacts numerous families in the United States. Children are increasingly among those affected by a chronic illness. The families undergo trials and experiences that tax their coping skills and require extensive coping strategies. This research project explored how families cope with chronic illness in one of the children in the family. The objective of the research project was to use the method of case study to examine the everyday lives, perceptions, and coping strategies of the family members as they deal with the realities of the effects of a child’s illness on a daily basis. Three families were studied using the case study format. Through interviews, observations, and investigation of data, the researcher gathered pertinent information about the participants’ lives and experiences. Emergent themes were identified from the facts gathered. These themes included information and suggestions that various participants offered. Included among the emergent themes were the following titles: alarming environment, redefined realities, relational requests, valuable individual, coping concoctions, as well as awareness and advocacy. The study’s emergent themes were divided into numerous subcategories. The multiple realities that the family members face is evidenced in the number of issues and themes that emerged from the study. This research project gives additional insight into the reality of the lives of families experiencing chronic illness in one of the children. Suggestions and observations by the participants could be useful for family, friends, medical professionals, educational systems, and support groups that interact with families facing similar trials. The descriptive style of the study lends itself to the vicarious interaction of the reader to the circumstances of the participants. This format allows the reader to transfer knowledge to his or her own experiences. The study could further be useful by offering detail to the existing knowledge base, in addition to aiding in the development of theory.

The Baby-boom generation, a major contributor to an unprecedented increase in older-aged people, is known for its zest for life and autonomy. Boomers are predicted to enter nursing homes in record numbers with multiple chronic illnesses and person-centered health care expectations. The purpose of this work was to describe current chronic illness management practices in nursing homes focused on person-centered (resident-directed) care and involvement of residents in health-related decision-making and self-care activities. Four projects were undertaken to accomplish this objective: (1) a systematic review of the quantitative literature regarding the management of type 2 diabetes, an exemplar chronic illness; (2) a synthesis of the qualitative literature describing chronically ill, older-aged adults' perceptions of chronic illness care decision-making; (3) an ethnographic pilot study describing the meaning of having type 2 diabetes to nursing home residents; and (4) a qualitative descriptive study of secondary data describing nursing home stakeholder perceptions of opportunities for resident involvement in chronic illness decision-making and self-care activities. Wagner's Chronic Care Model, modified for the nursing home, was the sensitizing framework for this research. Twenty studies met criteria for the systematic review, which described a lack of adherence to clinical practice guidelines and rare inclusion of the resident and family in management practices. The synthesis of 7 qualitative studies revealed 4 themes: (1) Being recognized because I matter; (2) Awareness of importance; (3) Empower through connections and opportunities; and (4) Time is precious. Cognitively capable older-aged adults described benefits from involvement in health care decisions and harm from non-involvement. They perceived inadequate time spent with health care providers as a major determinant of involvement. The pilot ethnography included 3 residents. Findings revealed a perception of few diabetes management choices but many unspoken resident preferences. The qualitative descriptive secondary analysis study included 5 residents, 7 family members, 8 advanced practice registered nurses, 5 physicians, and 6 administrators. Stakeholders perceived many opportunities for resident involvement in decision-making and self-care, but described as many limitations. Findings indicated a shortage of health care providers and differing stakeholder ideas of purpose and goals restricted resident involvement. Clinical, research, and policy implications were discussed. / text

Chronic illness is endemic in the United States. Though people with chronic illnesses will not be cured, interventions can improve their well-being. Creating art as an intervention has been shown to assist people with chronic illnesses to improve well-being. Though creating art as a health promotion intervention is widespread it has not been well studied and the structure, process and outcomes of the intervention are not well understood. The purpose of this study was to identify and describe various key components of creating visual art as a healing intervention in the context of chronic illness. This study developed knowledge that will assist practitioners who use this complex intervention and researchers seeking to test its effectiveness in health promotion and healing in a chronically ill population. A qualitative descriptive design was used to explore art as a healing intervention. Photographs of art created by participants were observed, and participants were interviewed to collect data on the structure, process and outcomes of art as a healing intervention. The content and descriptive analysis of the data are used to describe the components of art as an intervention as well as the modifiers of the intervention process and the relationship of the components to each other to allow further research to be appropriately focused. Creating art is an intervention that works with a whole person to provide an opportunity for emergent change through disrupting old patterns, creating movement, and providing the opportunity for the participant to adopt new healthier patterns for living with chronic illness. Creating art does not have a predictable outcome, but rather has patient specific outcomes dependent on the patient's particular needs and individual self-organization. This study contributed to knowledge about creating art as a healing intervention by exploring various intervention components that must be explicated prior to development of program initiatives in practice and conducting systematic studies about the effectiveness of this intervention. The results of this study provide a foundation for a research career that both furthers the use of art as a healing intervention and further develops intervention theory to include complex evaluation methods.

In Canada, 3,300 children under the age of 20 are living with Crohn’s Disease (CD) (Crohn’s and Colitis Foundation of Canada, 2008). When an illness such as CD occurs in adolescence, the challenges associated with it are further compounded by the developmental tasks associated with this life stage. The purpose of this study was to understand how adolescents experience living with CD; to explore the impact of disease activity on their quality of life (QOL) and the strategies utilized to maintain and improve their QOL. Using a resiliency framework and narrative inquiry as a research methodology, seven adolescents were interviewed. The results include seven individual stories exemplifying their experiences, and from the stories shared, four patterns emerged: (1) Unconditional Support, (2) Embracing and Accepting Differences, (3) Attitudes and Personal Beliefs and (4) Daily Coping Strategies. These findings may have relevance for health professionals and families and adolescents with CD.