Dataset Information

Parents' experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence.

ABSTRACT:

Aims

To synthesise the qualitative evidence on parents' experiences of caring for a child aged ≤8 years with type 1 diabetes to identify: the challenges they encounter; their views about support received; ways in which support could be improved; and, directions for future research.

Methods

We searched Medline, EMBASE, CINAHL, PsycINFO and Web of Science databases to identify qualitative studies reporting parents' views and experiences of caring for a child with type 1 diabetes aged ≤8 years. Key analytical themes were identified using thematic synthesis.

Results

Fourteen studies were included. The synthesis resulted in the generation of two overarching themes. Monopolisation of life describes the all-encompassing impact diabetes could have on parents due to the constant worry they experienced and the perceived need for vigilance. It describes how parents' caring responsibilities could affect their wellbeing, relationships and finances, and how a lack of trusted sources of childcare and a desire to enable a 'normal' childhood constrained personal choices and activities. However, use of diabetes technologies could lessen some of these burdens. Experiences of professional and informal support describes how encounters with healthcare professionals, while generally perceived as helpful, could lead to frustration and anxiety, and how connecting with other parents caring for a child with type 1 diabetes provided valued emotional and practical support.

Conclusions

This synthesis outlines the challenges parents encounter, their views about support received and ways in which support might be improved. It also highlights significant limitations in the current literature and points to important areas for future research, including how sociodemographic factors and use of newer diabetes technologies influence parents' diabetes management practices and experiences. PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710.

SUBMITTER: Kimbell B

PROVIDER: S-EPMC8019496 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Cognitive behavioral therapy (CBT) for young people is increasingly being provided using technology-assisted formats. Although there is increasing evidence regarding the efficacy of such approaches, as illustrated by quantitative systematic reviews, the literature has also highlighted challenges with implementation factors, including high attrition rates and variable user engagement. Qualitative review methods can help to address the factors that impact young peoples' experience of technology-assisted cognitive behavioral therapy (tech-assisted CBT) and, thus, enable us to better understand such implementation factors. To date, no such qualitative synthesis exists. OBJECTIVE:The primary aim of this review was to systematically identify and synthesize the qualitative literature concerning the experiences of young people who have used tech-assisted CBT. METHODS:This systematic review applied Thomas and Harden's 2008 qualitative thematic synthesis approach. This involved line-by-line coding of the results sections of included studies and an inductive analysis on identified themes, followed by the generation of analytical themes through a process of iteration and interpretation of the descriptive themes. PsycINFO, ACM Digital Library, PubMed, EMBASE, and JMIR Publications databases were searched. The inclusion criteria were (1) studies involving school-aged young people over preschool age (6 years) but under the age of 18 years, (2) use of any form of tech-assisted CBT for any time period, (3) a stated focus of qualitative data to document the experiences of participants, and (4) studies published in English. The exclusion criteria were (1) interventions only provided face-to-face with no technological component, (2) only focused on the performance of the technology rather than participant experience, and (3) numerical data that sought to represent qualitative data. RESULTS:A total of 14 studies were included in this review. Overall, these studies represented interventions for low mood and anxiety (n=10), trauma or self-harm (n=2), and physical difficulties (n=2). Overall, 5 analytical themes emerged on young people's experiences with tech-assisted CBT: (1) helpfulness, (2) therapeutic process, (3) transferability, (4) gameplay experience, and (5) limitations. In addition, these analytical themes contained the following subthemes: positive experiences, tech-assisted CBT versus face-to-face CBT, understanding of a CBT model, process of change, skills development, application to everyday life settings, parental involvement, character relatedness, playability, negative experiences, and broad content. CONCLUSIONS:Overall, young people's experiences with tech-assisted CBT were mostly positive. The use of gaming environments, relatable characters, concrete metaphors, and age-appropriate narratives contributed to these positive experiences. Evidence suggests that technology can help to mediate face-to-face relationships with therapists and help young people to understand the CBT model. Clear barriers also emerged, including over-reliance on reading and writing skills and dissatisfaction with overly generalized content and comparison with commercial technologies. TRIAL REGISTRATION:International Prospective Register of Systematic Reviews (PROSPERO) CRD42018103388; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018103388.