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.

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.

A qualitative study of adolescent cancer survivors perspectives on social support from healthy peers - A RESPECT study.

BACKGROUND: Adolescents' psychosocial development is generally influenced by their peers. Those facing hospital-based cancer treatment are particularly challenged as they are isolated from their social network and lack sufficient coping resources. AIM: This study explores the adolescent cancer survivor's perceptions and experiences with healthy classmate socialization support efforts via hospital co-admittance, from diagnosis to reinstatement in school, as an intervention of the RESPECT (REhabilitation including Social and Physical Activity and Education in Children and Teenagers with cancer) Study. DESIGN: A phenomenological, descriptive study. METHODS: Using variation sampling, 14 adolescents (aged 14-19), who completed the RESPECT intervention (April 2016-July 2017), participated in qualitative, in-depth, semi-structured interviews that were thematically analysed. FINDINGS: Four themes emerged: (a) Ambassadors as liaison persons; (b) Ambassadors as promoters of normalization and identity continuity; (c) Ambassadors as 'behind the scenes' friends; and (d) feelings of vulnerability and inferiority. Ambassadors reinstated a sense of normalcy in the adolescents' daily life. They supported identity construction and served as liaison persons who buffered loneliness and social isolation as well as bridging a continued sense of belonging to one's school peer network. In contrast with other peers, ambassadors understood cancer-related issues, knowledge which they partially gained witnessing the impact of treatment-related side effects on their hospitalized classmates. However, the consequence of this trade-off was an asymmetry in their relationship, with the adolescents requiring a certain level of safeguard from their ambassadors to maintain equal power in the relationship. CONCLUSION: The ambassadors enhanced the adolescents' ability to cope with their altered social position during treatment and to psychosocially reinstate it on their return to school. IMPACT: Future interventions should offer opportunities for healthy peers to be educated in what it means to live with cancer. Future programs to sustain socialization in adolescents with cancer should involve healthy peers for the entirety of the treatment period.

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.

Living with the cerebellar mutism syndrome: long-term challenges of the diagnosis.

BACKGROUND: After posterior fossa tumour surgery, up to 39% of children experience postoperative cerebellar mutism syndrome (CMS) characterized by mutism and other motor and cognitive impairments. There is a lack of knowledge on the patient-reported challenges and long-term needs. Consequently, no specific recommendations exist for rehabilitative and supportive interventions for patients with CMS. The aims of this study were to explore the patients' experiences related to the sequelae of CMS, to identify challenges and needs regarding support and rehabilitation in the period of growing from child to adult and to add perspectives for future developments of supportive care and rehabilitative guidelines. METHODS: Ten semi-structured interviews were conducted with young adults diagnosed with CMS as children. A thematic analysis identified four themes describing challenges impacting aspects of the participants' lives. RESULTS: Four main themes were identified and highlight the rehabilitative need for focus on verbal and non-verbal communication skills in addition to the physical impairments. We found that brain tumour survivors with CMS can benefit from social and educational rehabilitation, straightforward and truthful information, support in structuring their everyday lives and increased public knowledge of CMS. CONCLUSION: Children with CMS face a variety of challenges affecting many aspects of their everyday lives. They should be entitled to the elements of a current rehabilitation initiative for childhood cancer to support patients' social disability and educational decline. Finally, we identified a need for an official information publication.

Reasons for Nonadherence to Statins - A Systematic Review of Reviews.

PURPOSE: Lipid-lowering medications are often prescribed to decrease the risk of micro- and macro-cardiovascular complications related to dyslipidaemia. Despite widespread prescription of lipid-lowering drugs, including statins, adherence to therapy is a challenge worldwide. This systematic review of reviews aimed to conduct a critical appraisal and synthesis of review findings and to provide an overview of the factors that were found to affect adherence to lipid-lowering drugs, focusing on statins, in the reviews. PATIENTS AND METHODS: A systematic review methodology was used. MEDLINE, Embase, and Epistemonikos databases were searched for relevant publications. AMSTAR 2 criteria were used to assess the quality of the selected publications. RESULTS: From a total of 763 screened publications, 9 met all inclusion criteria and were included in this synthesis. Several factors were identified as being associated with adherence to lipid-lowering agents. Among them, high socio-economic and educational position, and middle age had a positive effect on adherence to lipid-lowering agents. Contrary, female sex, older and younger age, non-white race, low socio-economic position, high co-payments, being a new statin user, comorbidities, side effects, regimen complexity, type and intensity of statin dose, smoking, alcohol consumption, imperceptible benefits, and medical distrust contributed to non-adherence. The overall quality of the included reviews was considered critically low to moderate. CONCLUSION: This review of reviews has evaluated the impact of factors on adherence statins. Further research related to modifiable predictors for non-adherence is warranted.

Classmates motivate childhood cancer patients to participate in physical activity during treatment: A qualitative study.

INTRODUCTION: Children with cancer experience reduced physical fitness and compromised social relationships during and following intensive treatment. This may negatively impact their quality of life. As part of the RESPECT study, we explored the motivations for participation in a physical activity programme during treatment. METHODS: Thirteen semi-structured interviews were conducted with seven boys and six girls, diagnosed with paediatric cancer in 2013 and treated with chemotherapy (age 8-16 years; time from diagnosis to interview 6-16 months). Interviews were conducted in the children's homes. RESULTS: The qualitative analysis showed that children's motivations for engaging in the physical activity programme during intensive medical treatment were primarily influenced by (a) opportunity for physical activity with a classmate; (b) participation in group physical activity sessions; (c) support from significant others; and (d) improvement of physical well-being. Main barriers included (a) poor physical well-being; (b) compliance with medical procedures and being treated in protective isolation; and (c) limited physical activity facilities. CONCLUSION: Despite barriers, it is possible to motivate and engage children with cancer in physical activity during intensive treatment in a paediatric oncology ward. Physical exercise and activity should be recommended and promoted from diagnosis throughout the treatment period and should include psychosocial and professional support.

A qualitative study of decision-making on Phase III randomized clinical trial participation in paediatric oncology: Adolescents' and parents' perspectives and preferences.

AIM: To explore parents' and adolescents' motives for accepting/declining participation in the ALL2008 trials and adolescents' involvement in the decision-making process. BACKGROUND: Children and adolescents with acute lymphoblastic leukaemia treated on the Nordic Society of Paediatric Haematology and Oncology ALL2008 protocol were eligible for two randomizations testing 6-mercaptopurine treatment intensifications to improve efficacy and Asparaginase de-escalation to reduce toxicity. We recently reported that while adolescents favoured treatment reduction, parents of young children favoured treatment intensification. DESIGN: A qualitative, exploratory study. METHODS: A maximum variation sampling strategy was used. Five adolescents aged 12-17 years, six parents of adolescents and five parents of children aged 1-12 years were interviewed in the period March-May 2015. Data were analysed using content analysis. FINDINGS: Adolescents and parents emphasized the importance of adolescents' active participation in decisions regarding enrolment into clinical trials. A majority of adolescents were either final or collaborative decision-makers. Parents stated that in case of disagreement, they would overrule the adolescents' decision. There were no differences between motivations of preferences held by parents of children or adolescents, respectively. Decisions were based on subjective values attributed to cure contra toxicity and individual preferences for either standard or experimental treatment. The possibility of a negative outcome induced fear of decisional regret and distress by the parents, yet they invested considerable trust in the physician's expertise. CONCLUSION: Our findings highlight the importance of adolescents' active involvement in consent conferences. Research on management of disagreements between adolescents and parents in trial decisions is needed.