Isolated thoughts and feelings and unsolved concerns: adolescents’ and parents’ perspectives on living with type 1 diabetes – a qualitative study using visual storytelling

Castensøe-Seidenfaden, Pernille; Teilmann, Grete; Kensing, Finn; Hommel, Eva; Olsen, Birthe Susanne; Husted, Gitte Reventlov

doi:10.1111/jocn.13649

Cited by 38 publications

(55 citation statements)

References 42 publications

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“…More than 25% of the adolescents in our study agreed with item 5, “We cannot talk to each other about the sadness we feel,” and more than 22% agreed with item 9, “We avoid discussing our fears and concerns”. It is known that families affected by T1D find sharing their worries and concerns challenging . Family members may hide their worries and concerns to protect themselves and avoid worrying one another, resulting in misunderstandings, frustration, and loneliness .…”

Section: Discussionmentioning

confidence: 99%

Assessment of family functioning in families with a child diagnosed with type 1 diabetes ‐ Validation and clinical relevance of the General Functioning subscale of the McMaster Family Assessment Device

et al. 2019

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Background Type 1 diabetes (T1D) can have a negative effect on family functioning, which is associated with deterioration in metabolic control. Therefore, a valid tool for assessing family functioning is clinically relevant. We assessed the quality and validity of the Danish general functioning (GF) subscale of the family assessment device (FAD). Additionally, we investigated GF scores among adolescents with T1D and their parents and the relationship between family functioning and background variables, including metabolic control. Methods All Danish families with a child diagnosed with T1D (N = 1997) were invited to participate in a web‐based survey. In total, 616 adolescents (aged 12‐17 years) and 1035 parents (of children aged 2‐17 years) responded. The quality and validity of measurements made using the GF subscale were assessed using the Rasch model and graphical log‐linear Rasch models (GLLRMs). Differences among GF responses were also assessed using GLLRMs. The relationships between GF scores and background variables were examined by multivariate analyses. Results A dichotomized version of the GF subscale provided essentially valid measures of family functioning. Furthermore, the GF subscale measured family functioning most accurately in families with worse family functioning than in our population. To accurately characterize family functioning, it is important to take both parent's and adolescent's perceptions into account. Family functioning was associated with glycated hemoglobin (HbA1c) levels, and discrepancies in family functioning were associated with higher HbA1c levels. Conclusions A dichotomized GF subscale is useful for assessment of family functioning. Parent's and adolescent's scores should be kept separate. Family functioning is associated with HbA1c levels.

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Section: Discussionmentioning

confidence: 99%

Assessment of family functioning in families with a child diagnosed with type 1 diabetes ‐ Validation and clinical relevance of the General Functioning subscale of the McMaster Family Assessment Device

et al. 2019

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“…Using visual storytelling with young people with T1DM (N=9) and their parents (N=13) [ 28 ], we explored users’ experiences of living with T1DM in individual interviews based on their personal photographs. Young people and their parents experienced the same concerns and challenges related to living with T1DM.…”

Section: Methodsmentioning

confidence: 99%

“…Workshop content was based on the results from our quantitative and qualitative pre-studies [ 27 , 28 ]. The results from the pre-studies were merged by a mixed methods concurrent design [ 29 ] to interpret the challenges that young people and parents face living with T1DM.…”

Section: Methodsmentioning

confidence: 99%

“…Author PC-S presented the app to a total of 38 health care providers individually (n=13) or in eight groups (n=25). The presentation included a summary of young people’s and parents’ needs [ 28 ], a 15-minute introduction to the app, and two role-playing scenarios in which health care providers were asked to introduce the app and use it as a dialogue ice breaker while a colleague or PC-S played the role of a young person with T1DM. Finally, health care providers were asked to familiarize themselves with the app in their outpatient clinics and use it with at least 2 young people with T1DM during the 5-week study period.…”

Section: Methodsmentioning

confidence: 99%

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Designing a Self-Management App for Young People With Type 1 Diabetes: Methodological Challenges, Experiences, and Recommendations

Castensøe-Seidenfaden¹,

Husted²,

Teilmann³

et al. 2017

JMIR Mhealth Uhealth

Self Cite

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BackgroundYoung people with type 1 diabetes often struggle to self-manage their disease. Mobile health (mHealth) apps show promise in supporting self-management of chronic conditions such as type 1 diabetes. Many health care providers become involved in app development. Unfortunately, limited information is available to guide their selection of appropriate methods, techniques, and tools for a participatory design (PD) project in health care.ObjectiveThe aim of our study was to develop an mHealth app to support young people in self-managing type 1 diabetes. This paper presents our methodological recommendations based on experiences and reflections from a 2-year research study.MethodsA mixed methods design was used to identify user needs before designing the app and testing it in a randomized controlled trial. App design was based on qualitative, explorative, interventional, and experimental activities within an overall iterative PD approach. Several techniques and tools were used, including workshops, a mail panel, think-aloud tests, and a feasibility study.ResultsThe final mHealth solution was “Young with Diabetes” (YWD). The iterative PD approach supported researchers and designers in understanding the needs of end users (ie, young people, parents, and health care providers) and their assessment of YWD, as well as how to improve app usability and feasibility. It is critical to include all end user groups during all phases of a PD project and to establish a multidisciplinary team to provide the wide range of expertise required to build a usable and useful mHealth app.ConclusionsFuture research is needed to develop and evaluate more efficient PD techniques. Health care providers need guidance on what tools and techniques to choose for which subgroups of users and guidance on how to introduce an app to colleagues to successfully implement an mHealth app in health care organizations. These steps are important for anyone who wants to design an mHealth app for any illness.

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“…Parents of both younger and older children report a constant worry of hypoglycemia and feelings of panic from just thinking about it [12] [13]. This was particularly the case during the night, when the child could suffer from hypoglycemia while sleeping and never wake up anymore [11] [14].…”

Section: Introductionmentioning

confidence: 99%

The Health and Well-Being among Children with Diabetes and Low HbA1c—A Qualitative Study in Sweden

Lendahls¹,

Edvardsson²

2018

Health

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Aims and objectives: To examine health and well-being, as well as the need for support among children and parents where the child has T1DM with low HbA1c (<52 mmol/mole). The purpose was also to investigate the extent to which children's and parents' experiences match. Introduction: Studies have shown that children with diabetes type 1 (T1DM) rate their lives as worse than healthy peer ratings. In Sweden, views have been expressed that children, as well as their parents, feel pressurized by the diabetes teams to achieve low HbA1c values, which can lead to poorer mental health for the family. Design: A qualitative study. Methods: A consecutive sample of 11 children and their parents (one father, ten mothers) was interviewed together but individually guided by a semi structured interview guide. Interviews were analyzed using thematic content analysis. Results: Four main categories were consistent across children and their parents; 1) attitude to the illness, 2) sadness about diabetes, 3) the importance of the social network, and 4) the importance of the diabetes team. Worries about hyperglycemia were more prominent than worries about hypoglycemia in both children and parents. A distinguishing feature of the interviewed children was that they were responsible, strict and targeted. Many of them were competitive and took part in various sports, even at a very advanced level. Conclusions: This study shows that children with low HbA1c values experience good health and good well-being. Family support, good planning, and high acceptance of their illness contributed to this.

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Isolated thoughts and feelings and unsolved concerns: adolescents’ and parents’ perspectives on living with type 1 diabetes – a qualitative study using visual storytelling

Cited by 38 publications

References 42 publications

Assessment of family functioning in families with a child diagnosed with type 1 diabetes ‐ Validation and clinical relevance of the General Functioning subscale of the McMaster Family Assessment Device

Assessment of family functioning in families with a child diagnosed with type 1 diabetes ‐ Validation and clinical relevance of the General Functioning subscale of the McMaster Family Assessment Device

Designing a Self-Management App for Young People With Type 1 Diabetes: Methodological Challenges, Experiences, and Recommendations

The Health and Well-Being among Children with Diabetes and Low HbA1c—A Qualitative Study in Sweden

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