Trying to be like everybody else: A qualitative study revealing the importance of social contexts and illness representations among adolescents with type 1 diabetes and their parents.

OBJECTIVE: Type 1 diabetes is one of the most common chronic conditions in young children and adolescents. During the period of adolescence, young people with diabetes often struggle with self-management and have compromised health-related quality of life. This often leads to familial conflicts affecting all family members negatively. The aim of this study is to provide qualitative insight into the everyday life of families with adolescents with type 1 diabetes. METHODS: The data consisted of participatory family workshops conducted using interactive dialogue tools. The total number of participants was 33 (adolescents n = 13, parents n = 20). The adolescents were between 15 and 17 years. The data were analyzed using systematic text condensation. RESULTS: The results showed two main themes. The first theme, Diabetes-friendly and unfriendly social contexts, highlighted how the (dis)comfortability of disclosing diabetes was a significant factor in achieving optimal metabolic control. For parents, it affected their perception of social support. The second theme, incongruent illness representations among family members, dealt with the extended family conflict during the period of adolescence. DISCUSSION: Insights from our study could help healthcare professionals apply a family-centered approach minimizing family conflict and supporting metabolic control when consulting families with adolescents with type 1 diabetes.

"It's All about Calculations-But There Are No Definite Results"-Parental Adaptation and Coping during the First Month following Their Child's Diabetes Diagnosis.

Diabetes-related habits established during the first few years after diagnosis are difficult to change. Therefore, the initial period after a child has been diagnosed with diabetes holds a unique potential for early interventions to adjust adverse patterns of diabetes self-management before they become firmly established. Family functioning is strongly related to glycemic levels, and attending to parents' needs at the time of diagnosis could therefore reduce psychological distress and improve glycemic levels in their children. This study aims to investigate parental adaptation to and coping with their child's diabetes diagnosis during the first month post-diagnosis. Twenty interviews with parents of children (0-18 years) with newly diagnosed type 1 diabetes were conducted and analyzed using systematic text condensation. Four themes were identified: (1) Removal of the safety net, when families experience that they are now on their own; (2) Hit by the realities, when parents realize the impact of living with diabetes; (3) Hang in there, when families mobilize resources to get them through a tough period; and (4) Toward a new normal, when parents begin to reestablish their life with diabetes in mind. This study generated unique insights into early parental adaptation and coping after their child was diagnosed with diabetes.

Participatory family workshops in psychosocial health and illness research: experiences from Danish health promotion projects.

Family involvement in health and illness research is a complex matter, often characterized by unclear structural relations and contrasting needs and expectations within the family. As the family is a setting in which health and illness behaviors are developed, maintained and potentially changed, gaining knowledge about family dynamics and how to approach familial health promotion is essential. But which methodological approaches are best suited to collecting data for generating such knowledge? We propose using participatory family workshops as a method to generate in-depth data on health-related psychosocial family dynamics, the goal is to improve the field of familial health promotion. We have used family workshops in a variety of settings among various target groups in different research and development projects. In the present article, we re-visit and discuss three research projects focusing on (i) families living with type 2 diabetes, (ii) family-based prevention of childhood obesity and (iii) families with a child with type 1 diabetes. We present experiences with all phases involved in planning and facilitating research workshops. Key points are discussed in relation to implications and perspectives for practice and research. Family workshops are complex and sometimes unpredictable. However, when family workshops are successful, they provide rich and dynamic in-depth data that cannot be produced using more traditional forms of data collection. The article provides an outline of experiences as well as hands-on recommendations for working with family workshops.

Communication and Social Relations: A Qualitative Study of Families' Experience with Their Outpatient Pediatric Diabetes Visits.

Clinical outpatient visits comprise a relatively small part of the lives of children with diabetes and their families, but there is evidence that these visits have a strong impact on the long-term management of diabetes. Because children with diabetes are looking at frequent hospital visits for the rest of their lives, it is important to explore their experiences to ensure visits meet their needs. This study aimed to investigate families' experiences with outpatient visits at a pediatric diabetes clinic. Thirteen semi-structured family interviews were conducted. Systematic text condensation was used to analyze the data. With an analytical focus on communication and social relations, nine themes were identified: 1. Discrepancies in perception of diabetes tasks, 2. Talking about adult things, but the children listen, 3. The importance of spoken and written words, 4. Confusion about division of responsibilities, 5. Relief when someone eases the burden, 6. Courtesy when visiting the clinic, 7. Understanding of the family context, 8. Importance of continuous personal relations, and 9. Need for a facilitated peer network. The findings encourage reflection on how to improve communication and underline the importance of establishing a continuous and personal relation between families and health care professionals to improve families' experience with pediatric outpatient visits.

Exploring protective factors through positive psychology and salutogenesis in Danish families with type 2 diabetes.

People with type 2 diabetes (T2D) live with several challenges, which may enhance the risk of poor mental and physical health. However, despite living with a chronic illness, some individuals manage to achieve a life with positivity and well-being. The objective of this study is to explore the potential of Positive Psychology and Salutogenesis when analyzing how families with one or more members with T2D experience having resources leading to thriving. Data consist of 18 semi-structured family interviews with 38 participants. Data were analyzed using systematic text condensation with the concepts of sense of coherence and upward/downward spirals as the analytical framework. The analysis revealed three overall findings: (i) T2D is perceived as manageable due to general optimism despite living with a chronic illness; (ii) establishing supportive social relations means having the opportunity to share the burden of diabetes; and (iii) achieving an open dialogue and communicating the difficulties of diabetes without straining surroundings with negative illness communication. The three overall findings may reinforce each other in an upward spiral and enhance the sense of coherence. These findings have implications for diabetes management research and our understanding of psychological health in chronic illness. The overall goal is to help people with diabetes create meaning with their illness and make use of their social environment through dialogue and communication in order to increase positivity, optimism and mental health.

Type 2 diabetes is a chronic disease that involves ongoing disease self-management and several challenges, which may cause stress and negatively impact the quality of life. It can be difficult for people with diabetes and their relatives to manage the demanding illness and integrate it into daily life. However, despite living with diabetes, some individuals live a life with good mental health, positivity and well-being. This article uses the analysis of 18 interviews with 38 participants to describe factors influencing mental health in families with one or more members with type 2 diabetes. Factors such as optimism, supportive social relations and open communication all contributed to the family's positivity and mental health. When the families were optimistic about life with diabetes, when they were having and using supportive social relations and when they achieved a dialogue and communicated the difficulties of diabetes, diabetes seemed easier to manage and the burden of the illness where reduced. Optimism, supportive social relations and open illness communication appear connected and enhance one another. The goal is to help people with diabetes create meaning with their illness and make use of their social environment through dialogue in order to increase positivity, optimism and mental health.

Playful Communication and Care: Exploring Child-Centred Care of Young Children With Type 1 Diabetes Through the Framework of Zone of Proximal Development.

Introduction: Little is known about the psychosocial experiences and care needs of young children under the age of 7 years who have been diagnosed with type 1 diabetes. To address this knowledge gap, we examine children's psychosocial care needs through the lens of child-centred care and the framework of Zone of Proximal Development. Objectives: To explore current care practices for young children with diabetes and identify aspects of child-centred care already successfully integrated into current practice. Method: Individual face-to-face, semi-structured interviews were conducted with 20 Healthcare Professionals, representing 11 of 17 paediatric diabetes clinics in Denmark. Results: Our data provided valuable insights into existing child-centred practices. Our analysis identified practices covering four main themes: 1. Accommodating immediate emotional needs, 2. Putting children before diabetes, 3. Encouraging meaningful participation, 4. Playful communication. Discussion: Healthcare Professionals provided child-centred care, largely through play-based approaches that make diabetes care meaningful and relevant. Such practices provide the scaffolding necessary to enable young children to gradually engage, comprehend and participate in their own care.

Living with a disability: a qualitative study of associations between social relations, social participation and quality of life.

PURPOSE: We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40 years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation. MATERIALS AND METHODS: Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews and individual interviews were audiotaped, transcribed, and thematic data analysis was conducted. RESULTS: We identified caregiving, dependency, and understanding as essential for quality of life. Acceptance from society, discrimination and prejudice, and the ability to participate in society were also highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants. CONCLUSIONS: Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects for the quality of life of the individuals. Social relations were closely related to social participation, and the latter affected the quality of life of the participants. Social tactics were used to navigate social relations. Implications for rehabilitation We suggest to formalize the concept of social tactics and use it in patient education to enhance quality of life in individuals living with disabilities. People may accept and learn to cope with the impact of their disability, but how they maintain their social participation and social relations also impact on their quality of life. In their assessment, professionals working with individuals with disabilities should, therefore, give more priority to analyze the impact of social relations. When intervening, an effort to establish and maintain social relations should be considered along with psychological help, allocation of aids and economical support aiming to enhance quality of life and social participation among individuals with disabilities. When evaluating efforts to improve quality of life, it is important to investigate whether the intervention has improved the social relations.

Conceptualization, operationalization, and content validity of the EQOL-questionnaire measuring quality of life and participation for persons with disabilities.

BACKGROUND: Measurement of quality of life demands thoroughly developed and validated instruments. The development steps from theory to concepts and from empirical data to items are sparsely described in the literature of questionnaire development. Furthermore, there seems to be a need for an instrument measuring quality of life and participation in a population with diverse disabilities. The aim of this paper was to present and discuss the initial steps in the development of the Electronic Quality of Life questionnaire (EQOL). METHODS: The development of EQOL included six steps: 1) Establishing conceptual understanding; 2) Development of interview guides which build on the conceptual understanding; 3) Qualitative interviews of 55 participants (10-40 years old) with different types and severities of disabilities; 4) Conceptualization of domains identified in the qualitative data through thematic analysis; 5) Operationalization of the identified domains into items and; 6) Evaluation of content validity of the first version of the EQOL-measure. Content validity was examined by cognitive interviews with participants in the target group as well as by continuous feedback from an advisory board. RESULTS: We identified six domains (function and health, environment (physical and social), social network, wellbeing, occupation, and managing strategies) based on themes derived from the qualitative interviews and on conceptual discussions within the author group. These domains were incorporated in a conceptual model and items were generated to measure the content of each domain. Participants expressed satisfaction with EQOL but most participants felt that there were too many items. CONCLUSIONS: In total, 191 items were included in the questionnaire. Participants felt that the EQOL-questionnaire was relevant to their quality of life and participation. We have shown that it is possible to include quality of life and participation for people with various disabilities in one instrument. Although capturing less detail than a condition specific instrument, EQOL includes aspects perceived important for people with disabilities who are not included in general surveys. This is relevant when for example evaluating environmental adaptations and when comparing populations with various disabilities.