Parents' experiences, needs, and preferences in pediatric diabetes care: Suggestions for improvement of care and the possible role of the Internet. A qualitative study

Boogerd, Emiel A; Schaaijk, Nienke M. Maas–van; Noordam, C.; Marks, Hans; Verhaak, Chris M.

doi:10.1111/jspn.12118

Cited by 15 publications

(45 citation statements)

References 59 publications

(58 reference statements)

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“…In cancer, preferences were found to vary for the type of provider (paediatric oncologist vs family doctor) that should be providing the follow-up 15. In a study on type 1 diabetes (T1D), parents expressed their desire for more tailored care 16. Based on their findings, authors of a recent study about parents’ preferences regarding education for long-term complications of T1D recommended that parents’ role be acknowledged and that they be provided with the level of information that meets their needs, which includes an appropriate timing of information provision and credible resources 17.…”

Section: Introductionmentioning

confidence: 99%

Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

2019

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IntroductionIt is accepted that although patients may initiate a visit to a healthcare provider, follow-up visits are often based on recommendations from providers. This suggests that follow-up care, since not initiated by patients, may not reflect patients’ perception of a need for care. However, few studies have examined the burden of regular follow-up care and patients’ perceived value of such care. For parents of children with type 1 diabetes (T1D), follow-up visits are scheduled regardless of how well controlled the diabetes is. Our study examines how benefits and burden from the parents’ perspective could affect their preferences in regard to the frequency of regular follow-up care.MethodsWe aim to develop an online patient survey to be distributed to parents of children living with T1D in the province of Quebec, Canada. The survey will be available in French and English, and distributed through diabetes clinics, on social media groups and forums for parents of children with T1D. The survey will be developed in collaboration with parents of children with T1D to ensure that it appropriately reflects the services in regular follow-up care and that the language is understandable and clear.Ethics and disseminationAll participants will be informed of the requirements and objectives of the survey at the beginning of the questionnaire and that the data collected will remain anonymous and confidential. Ethics approval for the study was obtained from the research ethics committee of the CHU de Québec-Université Laval. Results of the study will be shared with relevant stakeholders with the aim of improving practices and better meeting patients’ and families’ needs.

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Section: Introductionmentioning

confidence: 99%

Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

2019

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“…Family and parental functioning are related to well-being, self-care skills, and glycemic control in children, which makes it important that diabetes teams are aware of the impact of the disease and its treatment on parents [ 1 , 6 , 14 - 19 ]. Studies show that parents need easy access to their diabetes care team [ 8 , 20 , 21 ], local peer support [ 22 - 26 ], and tailored information about the disease and its management provided by their own diabetes team [ 8 , 27 - 30 ]. This positively affects their quality of life [ 8 , 23 , 26 ] and helps them adequately cope with the disease.…”

Section: Introductionmentioning

confidence: 99%

“…Studies show that parents need easy access to their diabetes care team [ 8 , 20 , 21 ], local peer support [ 22 - 26 ], and tailored information about the disease and its management provided by their own diabetes team [ 8 , 27 - 30 ]. This positively affects their quality of life [ 8 , 23 , 26 ] and helps them adequately cope with the disease.…”

Section: Introductionmentioning

confidence: 99%

“…New technologies such as the Internet can help diabetes teams in delivering these aspects [ 8 , 25 , 26 , 29 , 31 - 40 ]. Despite the great potential of the Internet and parents’ positive attitude toward using Internet in care, there has been little research into the efficacy and feasibility of Internet interventions for the parents of chronically ill children, especially interventions that combine multiple aspects of care [ 38 , 39 , 41 ].…”

Section: Introductionmentioning

confidence: 99%

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Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial

Boogerd¹,

Schaaijk²,

Sas³

et al. 2017

J Med Internet Res

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BackgroundRaising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information.ObjectiveThe first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D. The second aim was to assess the feasibility of implementing Sugarsquare in clinical practice.MethodsThe parents of 105 children (N=105) with T1D below the age of 13 participated in a 6-month multicenter randomized controlled feasibility trial. They were randomly assigned to an experimental (n=54, usual care and Sugarsquare) or a control group (n=51, usual care). Attrition rates and user statistics were gathered to evaluate feasibility of the trial and implementation. To determine potential efficacy, the parenting stress index (PSI-SF) was assessed at baseline (T0) and after 6 months (T1).ResultsOf a potential population of parents of 445 children, 189 were willing to participate (enrollment refusal=57.5%, n=256), 142 filled in the baseline questionnaire (baseline attrition rate=25%, n=47), and 105 also filled in the questionnaire at T1 (post randomization attrition rate during follow-up=26%, n=32). As such, 24% of the potential population participated. Analysis in the experimental group (n=54) revealed a total of 32 (59%) unique users, divided into 12 (38%) frequent users, 9 (28%) incidental users, and 11 (34%) low-frequent users. Of the total of 44 professionals, 34 (77%) logged in, and 32 (73%) logged in repeatedly. Analysis of the user statistics in the experimental group further showed high practicability and integration in all users, moderate acceptability and demand in parents, and high acceptability and demand in health care professionals. Baseline parenting stress index scores were related to the parents’ frequency of logging on (ρ=.282, P=.03) and page-views (ρ=.304, P=.01). No significant differences in change in parenting stress between experimental and control group were found (F3,101=.49, P=.49).ConclusionsThe trial can be considered feasible, considering the average enrollment refusal rate, baseline attrition rate and postrandomization attrition rate, compared to other eHealth studies, although lower than hypothesized. Implementing Sugarsquare in clinical practice was partly feasible, given moderate demand and acceptability in parent users and lack of potential efficacy. Parents who reported higher levels of parenting stress used Sugarsquare more often than other parents, although Sugarsquare did not reduce parenting stress. These results indicate that Web-based interventions are a suitable way of providing parents of children with T1D with additional support. Future studies should determine how Sugarsquare could reduce parenting stress, for instance by adding targeted intervent...

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“…Parents report that they feel worry and fear of both short-and long-term consequences of the illness [10] [11]. The worry was more pronounced during the first years after diagnosis, but as time went they became more experienced and new situations arose more seldom, which reduced the stress and anxiety [10].…”

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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Parents' experiences, needs, and preferences in pediatric diabetes care: Suggestions for improvement of care and the possible role of the Internet. A qualitative study

Abstract: According to parents, diabetes teams should focus on the impact of the disease, parents' experience, and the child's development, and provide online professional and peer support.

Cited by 15 publications

References 59 publications

Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial

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

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