Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges

Overgaard, Mathilde; Lundby‐Christensen, Louise; Grabowski, Dan

doi:10.1111/jocn.15500

Cited by 16 publications

(29 citation statements)

References 41 publications

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“…The results of our study showed that young people with less diabetes-related worry had better SMBG adherence, consistent with a study on young people with T1DM in the U.S. 27 The literature suggested that a high level of diabetes-related worry can contribute to anxiety, 59 which can impose a cognitive burden on an adolescent with T1DM. Subsequently, young people tend to ignore diabetes management tasks (eg, SMBG).…”

Section: Discussionsupporting

confidence: 91%

Factors Associated with Adherence to Self-Monitoring of Blood Glucose Among Young People with Type 1 Diabetes in China: A Cross-Sectional Study

Lv¹,

Luo²,

Long³

et al. 2021

PPA

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Background Self-monitoring of blood glucose (SMBG) plays a crucial role in the maintenance of glycemic control in young people with type 1 diabetes mellitus (T1DM), but most of them do not perform SMBG as recommended. Few studies comprehensively explored factors that correlate with adherence to SMBG among this population on the basis of a framework. Hence, the aims of this study were to describe adherence to SMBG among young people with T1DM in China and explore its associating factors according to the Self and Family Management (SFM) framework. Methods A cross-sectional study was conducted on young people with T1DM in Hunan Province of China from July to August 2020. Based on the SFM framework, self-reported questionnaires were organized for the collection of data on adherence to SMBG, socio-demographic and clinical factors, resources, health care system, and personal factors. Factors associated with adherence to SMBG were determined through multivariate logistic regression analysis. Results A total of 165 young people were invited, of which 122 (73.9%) completed the questionnaires. The mean age was 12.41 years (SD = 3.18), and the proportion of young people who adhered to SMBG was 53.3%. Multivariate logistic regression analysis revealed that children aged 8–12 years (OR = 0.188, P = 0.002), from two-parent families (OR = 0.232, P = 0.019), and with better personal factors (eg, with more information of SMBG, OR = 1.072, P = 0.020; lower diabetes-related worry, OR = 0.917, P = 0.031; higher level of pain during SMBG, OR = 1.852, P = 0.001), had better adherence to SMBG. Conclusion Nearly half of the young people with T1DM were not adherent to SMBG in China. Clinicians need to pay more attention to adolescents from single-parent families with regard to their adherence to SMBG. Providing management strategies of SMBG, including delivering SMBG-related information, decreasing diabetes-related worry, and relieving pain related to SMBG, may improve adherence.

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Section: Discussionsupporting

confidence: 91%

Factors Associated with Adherence to Self-Monitoring of Blood Glucose Among Young People with Type 1 Diabetes in China: A Cross-Sectional Study

Lv¹,

Luo²,

Long³

et al. 2021

PPA

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“…Across all workshops, the same tools were used to facilitate dialogue among adolescents with T1D [22,24,25]. Author DG participated in all workshops, confirming that participants were presented with the same topics.…”

Section: Methodsmentioning

confidence: 84%

“…Five of the workshops originate from a study exploring intervention needs among families with a 13-to 18-year-old with T1D in a rural area of Denmark, the aim being to improve the overall diabetes approach at the local pediatric diabetes clinic [24]. Three of the workshops originate from an unpublished study exploring daily life with diabetes among 13-to 18-year-olds and their families, investigating the role of important relations in diabetes management.…”

Section: Methodsmentioning

confidence: 99%

“…Following our good experiences with The Family Mirror, modified versions have been successfully used in workshops with other target populations, including children and adolescents with T1D [24,25]. The overall idea and design of the tool were retained, but several statements and pictograms concerning, e.g., partners and offspring were left out because they were not relevant to the daily life of children and adolescents.…”

Section: Introductionmentioning

confidence: 99%

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Mirroring Life of Adolescents with Type 1 Diabetes—An Outline of Key Aspects

et al. 2021

Self Cite

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Background: Studies have shown that adolescents find diabetes management difficult and struggle with incorporating diabetes management into their daily life. A focus on issues adolescents perceive as important is necessary when designing high quality interventions aimed at improving health outcomes for adolescents with T1D. The present study aimed to provide: (1) a broad comprehensive reflection on issues adolescents with diabetes perceive as important; (2) a basis for developing a ‘Family Mirror’, specifically designed to generate dialogue in families with an adolescent with T1D. Methods: The qualitative data originate from 11 workshops with a total of 47 adolescents with diabetes between 8 and 18 years of age. Data were systematically analyzed. Results: Seven overarching, empirical themes were identified that provided an outline of aspects important to adolescents living with T1D: (1) Support, (2) Understanding, (3) Worries, (4) Limitations, (5) Independence, (6) Perceptions, and (7) Management. Several empirical indicators elaborated on the themes, thus creating a comprehensive reflection of life with T1D during adolescence. Conclusion: Given our comprehensive and broad approach to uncovering key aspects adolescents with diabetes perceive as important, we trust that the findings can be used as a basis for designing interventions intended for adolescents with T1D.

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“…According to the International Society for Pediatric and Adolescent Diabetes, the overall goal and purpose of diabetes treatment is "to provide care that results in high quality of life, normal growth and development, and lowest attainable risk of acute and long-term diabetes complications" [2]. Nevertheless, when a child is diagnosed with T1D the whole family is faced with chronic disruption [3,4] and increased risk of poor mental health [5,6]. The onset of T1D has numerous consequences for family life.…”

Section: Introductionmentioning

confidence: 99%

Home Education for Children with Newly Diagnosed Type-1 Diabetes-Exploring Needs and Experiences among Participants of Home Education Visits

MF¹,

SY²,

Lundby‐Christensen³

et al. 2021

austinjnurshealthcare

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Objective: Type 1-diabetes is increasing among younger age groups and type 1-diabetes has a major impact on daily life of both the children and their families. The aim of the current study was to explore a family and network centered intervention to children with newly diagnosed type-1 diabetes. Home education visits performed by health care professionals were evaluated using focus group interviews. Method: We conducted five focus group interviews with 21 home education attendants and two individual interviews with health care professionals. Employing inductive content analysis. Results: Families of children who have newly been diagnosed with type 1-diabetes struggle to comply with diabetes care and, thus, leaving the children to the care of others is a major concern. Lack of knowledge among members of family and social network, adhere to an anxiety of doing something wrong in relation to diabetes care. Home education visits educate the wider family and social network about diabetes care. Focus group participants and health professionals describe that the education visits constitute a major support for parents in the task of instructing family and social network members. Additionally, family and social network members report that they feel more confident to contribute more to the care of the child with type 1-diabetes. Conclusion: Existing prejudices and lack of knowledge leads to stress and worry among the social network of children with type-1 diabetes. Home education improves knowledge and feeling of confidence concerning diabetes care among family and social network, with the potential to strengthen and maintain close social relations.

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Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges

Cited by 16 publications

References 41 publications

Factors Associated with Adherence to Self-Monitoring of Blood Glucose Among Young People with Type 1 Diabetes in China: A Cross-Sectional Study

Factors Associated with Adherence to Self-Monitoring of Blood Glucose Among Young People with Type 1 Diabetes in China: A Cross-Sectional Study

Mirroring Life of Adolescents with Type 1 Diabetes—An Outline of Key Aspects

Home Education for Children with Newly Diagnosed Type-1 Diabetes-Exploring Needs and Experiences among Participants of Home Education Visits

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