"Parents’ experiences of caring for a young child with type 1 diabetes: A systematic review and synthesis of qualitative evidence

Barbara Kimbell*, Julia Lawton, Charlotte K Boughton, Roman Hovorka, David Rankin

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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.
Original languageEnglish
Article number160
JournalBMC Pediatrics
Volume21
Early online date4 Apr 2021
DOIs
Publication statusE-pub ahead of print - 4 Apr 2021

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