Exploring Family Perspectives on a Group-Based Hands-on Advanced Carbohydrate Counting Education Program for Children and Adolescents with Type 1 Diabetes: A Qualitative Study.

The care needs of children and adolescents with type 1 diabetes and their families are frequently approached as if they were identical to those of adults, overlooking the distinct challenges young people may face. It has been stated that children and adolescents often find conventional conversations with diabetes specialists tiresome and unpleasant. The present study focuses on familial experiences of an advanced carbohydrate counting program tailored to children and adolescents. The data encompass semi-structured interviews with families who participated in a group-based child-centered advanced carbohydrate counting program. The analysis revealed five themes: (1) peer-to-peer interaction is an essential determinant of sharing and learning; (2) illness perception significantly influences dietary intake; (3) normalization of diabetes in everyday life eases the disease burden; (4) repetition of dietary knowledge is important for retention; and (5) creating a safe and playful learning environment is crucial to engaging children and adolescents in their own treatment. The present findings suggest that it would be beneficial to explore and consider alternative teaching approaches that are adapted to a more interactive and engaging learning environment that is specifically tailored to children and adolescents. This entails moving away from traditional individual approaches.

Diabetes Management Support in Preschool and Primary School: A Qualitative Ideation Study Presenting Recommendations for Improved Communicative Practice.

Diabetes care in institutional settings is a significant challenge that affects the whole family as well as care workers and teachers. The present study is the ideation part of a rigorous development process in the KIds with Diabetes in School (KIDS) project. We have previously conducted a thorough three-part needs assessment in which we explored the problem area from the viewpoints of (1) municipal administrative staff, (2) preschool and school staff and (3) families. Based on the identified needs and to a great extent on the contents and shortcomings of existing guidelines, the objective of the present study is to explore and develop possible solutions and recommendations for addressing the challenges and problems. To meet this objective, we held comprehensive multistakeholder participatory workshops in each of the five Danish regions. Five main themes with multiple subthemes were identified as areas to be addressed: (1) training and knowledge, (2) communication and collaboration, (3) the designated contact/support person, (4) national guidelines, and (5) the Diabetes Coordinator. Our findings demonstrate that communicative structures and dynamics are at the very heart of the identified problems and challenges and that the possible solutions should revolve around improving existing structures and highlighting the importance of constantly working on understanding and developing communication strategies. We propose a set of recommendations for practice based on these communicative needs.

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.

Copenhagen Diabetes Consensus (CODIAC) 2021: User involvement in diabetes care, prevention and research.

AIMS: User involvement is pivotal for health development, but there are significant gaps in our understanding of the concept. The Copenhagen Diabetes Consensus on User Involvement in Diabetes Care, Prevention and Research (CODIAC) was established to address these gaps, share knowledge and develop best practices. METHODS: A literature review of user involvement was undertaken in diabetes care, prevention and research. Moreover, a Group Concept Mapping (GCM) survey synthesized the knowledge and opinions of researchers, healthcare professionals and people with diabetes and their carers to identify gaps between what is important for user involvement and what is being done in practice. Finally, a consensus conference discussed the main gaps in knowledge and practice while developing plans to address the shortcomings. RESULTS: The literature review demonstrated that user involvement is an effective strategy for diabetes care, prevention and research, given the right support and conditions, but gaps and key challenges regarding the value and impact of user involvement approaches were found. The GCM process identified 11 major gaps, where important issues were not being sufficiently practised. The conference considered these gaps and opportunities to develop new collaborative initiatives under eight overall themes. CONCLUSIONS: User involvement is effective and adds value to diabetes care, prevention and research when used under the right circumstances. CODIAC developed new learning about the way in which academic and research knowledge can be transferred to more practice-oriented knowledge and concrete collaborative initiatives. This approach may be a potential new framework for initiatives in which coherence of process can lead to coherent outputs.

Young children's perspectives on treatment and care: A qualitative study using narrative and play-based interviewing.

PURPOSE: To explore young children's (age 3-6 years) own experiences and perceptions of treatment and care when living with a chronic illness. DESIGN AND METHODS: The study employed a qualitative research design using a narrative and play-based interview approach. Individual face-to-face, narrative and play-based interviews were conducted with eight young children age 3-6 years with type 1 diabetes or cystic fibrosis. The play sessions took place at the home of the children and were video recorded. Interpretative phenomenological analysis was used to analyse the data and frame the study. RESULTS: Our analysis identified six main themes: 1. Children understood illness through their bodily experience of treatment and care, 2. Children's experience of care and treatment ranged from a feeling of powerlessness to a sense of agency, 3. Children depended on their parents to provide comfort, advocacy and protection, 4. Children's perceptions of treatment and care were inherently related to their experiences of familiarity, interpersonal relationships and trust, 5. Children with type 1 diabetes did not perceive that they played an active role during consultations, and 6. Children associated medical treatment with receiving tangible rewards or positive feedback. CONCLUSION: Children expressed a need to feel safe and build agency. They experienced this through participation and interpersonal relationships with healthcare professionals. PRACTICE IMPLICATIONS: We should prioritize the establishment and implementation of age-appropriate psychosocial care practices that support young children in participating, forming relationships, and building trust.

Mechanisms of Stigmatization in Family-Based Prevention and Treatment of Childhood Overweight and Obesity.

It is well established that overweight and obesity are often accompanied by stigmatization. However, the influence of stigmatization on interventions for overweight and obesity remains unknown. Stigma may be particularly harmful to children. This study aimed to examine how stigmatization affects efforts to reduce childhood overweight and obesity through family interventions. This research was conducted in a socially disadvantaged area in Denmark. Twenty-seven families and forty professionals participated in in-depth interviews or workshops. The data were analyzed using CMO configurations from a realist evaluation and the theory of stigmatization developed by Link and Phelan. Thus, an abductive approach was employed in the analysis, with its foundation rooted in the empirical data. The study found that the mechanisms of stigmatization could 1. restrain professionals and parents from approaching the problem-thereby challenging family recruitment; 2. prevent parents from working with their children to avoid eating unhealthy food for fear of labeling the child as overweight or obese; and 3. cause children with obesity to experience a separation from other slimmer family members, leading at times to status loss, discrimination, and self-stigmatization. The study showed how the mechanisms of stigmatization may obstruct prevention and treatment of childhood obesity through family interventions. It is suggested that the concept of stigma should be incorporated into the program theories of interventions meant to reduce childhood overweight and obesity.

Management of Diabetes during School Hours: A Cross-Sectional Questionnaire Study in Denmark.

Managing diabetes is complicated for many children. It often requires support from an adult during the school day. In Denmark, most children spend 30-35 h a week at school. Nevertheless, diabetes management in schools remains largely uninvestigated. This study aimed to examine the characteristics and organization of diabetes management in Danish primary schools from the personnel's perspective. All primary schools in Denmark were invited to participate in the study (n = 2129), and 525 schools were included. A questionnaire was constructed and sent by email. Questionnaire data are presented in the descriptive statistics and compared with the ISPAD guidelines. According to 77.2% of respondents, school personnel had received training in diabetes management, and 78.5% of the schools had at least one person available for diabetes support every day. Respondents felt prepared to help the students with counting carbohydrates (38.9%), dosing insulin (39.1%), and helping the students during high (52.1%) or low (60.3%) blood sugar levels, insulin chock (35.2%), or during activities (36.3%). Yet, diabetes management was a challenging task. Only 61.7% had an action plan for diabetes management, 37.4% had face-to-face information meetings with the parents, and 55.1% of respondents reported having sufficient time to cooperate with the parents.

"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.

Stigma-Generating Mechanisms in Families Enrolled in a Pediatric Weight Management Program: A Qualitative Study of Health Identities and Healthcare Authenticity.

In recent years, there has been increased awareness of obesity as a condition that carries a high level of stigma, as well as growing recognition of its prevalence and harm. Despite the increasing body of research on this topic, there is a gap in the literature regarding mechanisms that generate or exacerbate perceptions of weight stigma, especially within families and pediatric healthcare settings. The present study aims to identify potential stigma-generating mechanisms by focusing on inter-relational dynamics within these contexts. We conducted in-depth, semi-structured interviews with 11 families and analyzed the data by applying sociological theories on health identities and authenticity. Our study found four themes that represent potential stigma-generating mechanisms by being explicitly related to familial health identities and healthcare authenticity: (1) negotiating and reconstruction familial self-understanding, (2) between guilt, shame and conflicts, (3) navigating weight perceptions, and (4) the necessity of positivity and relevance. Our study shows the complexities of weight stigma within family and pediatric healthcare settings, emphasizing the need for sensitive and tailored support, as well as the value of working authentically as crucial aspects in preventing and/or reducing stigma.

Municipal Support of Diabetes Management in Daycare, Kindergarten and School: A Qualitative Study of Differences, Challenges and Potentials.

Diabetes care during institutional hours is a major challenge affecting the whole family. The aim of this study was to highlight challenges and potentials regarding municipal support in relation to diabetes care of children in school, kindergarten, and daycare. The dataset consists of 80 semi-structured online interviews with 121 municipal employees from 74 (of 98) municipalities in Denmark. Data were analysed using qualitative content analysis. The analysis produced four main themes: (1) Institutional staff initially feel insecure about diabetes care responsibilities, (2) There is a high degree of parental involvement and responsibilities during institutional hours, (3) The roles of health employees vary, and (4) Fluctuating allocation of special needs assistants (SNAs) creates challenges. The findings of this nationwide qualitative study show that, even though Denmark guarantees, by law, the child's right to support in diabetes self-care in school and childcare institutions, diabetes management in Denmark still needs to be improved, with a view to ensuring equal support for all children with diabetes.

Cultural adaption and psychometric validation of the Danish Illness Identity Questionnaire (IIQ-DK) in adolescents and emerging adults with type 1 diabetes.

Purpose: The Illness Identity Questionnaire (IIQ) captures the ways in which individuals integrate chronic illness into their identity. The objectives were to linguistically validate and culturally adapt a Danish language version of the IIQ, and to evaluate the psychometric properties of this Danish version. Methods: IIQ was adapted through a forward-backward translation process, content validity assessment, and cognitive interviews (n = 5). Data for psychometric analysis were collected through an online Danish version of the IIQ (IIQ-DK). Data quality, internal consistency, and item correlations were assessed. Confirmatory factor analyses (CFA) were conducted. Results: Cognitive interviews resulted in re-wordings of two items. 1176 adolescents and emerging adults (15-26 years) with type 1 diabetes completed the IIQ-DK. Floor and ceiling effects were demonstrated for most items. Analysis showed good internal consistency of scales, as well as internal and discriminant item validity. CFA fit statistics after including correlated residuals were good for all scales. CFA showed acceptably high factor loadings for all items except one. Conclusion: Results demonstrated good reliability and psychometric properties of the IIQ-DK, which may be forwarded to use in research and clinical practice as a robust instrument to measure illness identity in adolescents and emerging adults with type 1 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.

Demanding devices - Living with diabetes devices as a pre-teen.

Diabetes technology is an integral part of the lives of children with type 1 diabetes (T1D). However, children's experiences with these technologies are often overlooked. Furthermore, little is known about psychosocial aspects of technology use during children's transition to adolescence. The aim of this study was to explore how children with T1D perceive, make sense of and handle diabetes technologies in their everyday lives. Data were obtained from interviews with 18 children with T1D aged 10-14 years (pre-teens). The interviews were conducted between March and August 2019 in Denmark. Photos were used as probes to facilitate discussion and reflection about issues pre-teens found important. The study was informed by a technology-in-practice perspective to articulate how diabetes technologies were embedded in practices of use. The analysis focused on insulin pumps and technologies for continuous glucose monitoring (CGM). We found that these technologies introduced tensions regarding dependence and independence, wanted and unwanted attention, worries and peace of mind, treatment and care, visibility and invisibility as well as control and loss of control. We synthesized the tensions into the following three themes which characterized the pre-teens' relationship with diabetes technology: 1) demanding devices, 2) the social context of using diabetes technologies, and 3) care and support through data. Our findings indicate the need for researchers and clinicians to engage with the social and emotional dimensions of living with diabetes technologies. Importantly, this includes recognizing the norms underlying diabetes technologies and how these inform care in pre-teens with T1D.

The Role of Trust in the Care of Young Children with Type 1 Diabetes.

Using the theoretical framework of Guido Möllering conceptualising trust as a mental process composed of three elements-expectation, interpretation and suspension-we examined the role of trust in relation to young children's (age ≤ 7 years) psychosocial needs when diagnosed with type 1 diabetes. Based on qualitative interviews with health care professionals (HPCs) from paediatric diabetes clinics in all regions of Denmark, we identified four main themes: trust through meaningful interaction, trust as a key factor at the time of diagnosis, trust in a long-term perspective and caregivers as the bridge to trust. We conclude that trust between young children and HCPs is central to children's psychosocial experience, as well as a primary need, when children are diagnosed with type 1 diabetes. Trusting relationships counteract children's experience of fear, anxiety and needle phobia and reinforce HCPs' experience of providing good psychosocial as well as medical care. The present study offers insights into how trust can positively affect young children's experience of diagnosis. This study also points out some key barriers to and facilitators of creating trusting relationships. This research is a first step towards a greater understanding that can inform collective future guidelines on the psychosocial care of young children.

A delicate balance between control and flexibility: Experiences of care and support among pre-teenage children with type 1 diabetes and their families.

For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre-teens (9-12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre-teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre-teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

An exploratory study of how young people experience and perceive living with type 1 diabetes during late adolescence and emerging adulthood.

OBJECTIVE: Suboptimal glycemic control and psychosocial challenges are significant concerns for adolescents and emerging adults (collectively young people) with type 1 diabetes. Knowledge about young peoples' attitudes towards living with type 1 diabetes is inadequate, but the issue is important in the development of strategies to improve glycemic control and psychosocial well-being. This study explored young peoples' perceptions of living with type 1 diabetes. METHODS: An exploratory, qualitative design was employed. Data were collected through five participatory workshops with 19 young people (age 15-25). Data were thematically analyzed. RESULTS: The overall depiction of living with type 1 diabetes was paradoxical; it affected everything and nothing. Living with type 1 diabetes was a balancing act between accommodating a "normal" way of living and self-management tasks of the treatment regimen. Participants' perceptions reflected shifting accounts that could be divided into five themes: (1) special rules during youth, (2) striving for autonomy, (3) an uncertain future, (4) social support, and (5) stigma and disclosure. DISCUSSION: It is important to probe for the multiple and interrelated social contexts that underlie young peoples' motives for adhering to and deviating from treatment regimens. Future studies should focus on relational aspects, including stigma mechanisms, the role of friends, and facilitation of balanced parental involvement.

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.

Contextual Complexities in Implementing a Family-Based Childhood Obesity Intervention: The Perspectives of Enrolled Children and Their Parents.

Family interventions to treat childhood obesity are widely used, but knowledge about how family dynamics are affected by these interventions is lacking. The present study aims to understand how a family intervention impacts the context of family dynamics, and how different contexts affect the families' implementation of the intervention. Based on qualitative interviews, we studied families with a child between 9-12 years enrolled in a family intervention to treat childhood obesity at a pediatric outpatient clinic. We conducted 15 family interviews including 36 family members. We found that the family intervention created a new context for the enrolled children. They had to navigate in different contexts and non-supportive environments and push for change if they needed more supportive environments in their attempt to adhere to healthy habits. We show the complexities experienced by parents and grandparents when trying to comply with siblings' and/or grandchildren's different needs. The enrolled children were often indirectly blamed if others had to refrain from unhealthy preferences to create supportive environments. These findings are significant in understanding the important role of contexts in family-obesity interventions. This knowledge is relevant to health professionals, researchers, and policymakers.