Peer-reviewed article
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 ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This systematic review synthesises qualitative evidence from 14 studies on how parents experience caring for young children (aged 8 years or under) with type 1 diabetes. Parents face significant challenges including constant worry, vigilance about their child's condition, and impacts on their own wellbeing, relationships and finances. Professional healthcare support was generally valued but sometimes caused frustration, while connecting with other parents provided important emotional and practical support. Newer diabetes technologies appeared to reduce some of the burdens on parents.
Key points
- Parents experience 'monopolisation of life' through constant worry and perceived need for vigilance around their child's diabetes management
- Caring responsibilities affect parents' own wellbeing, relationships, and finances, and constrain personal choices and activities
- Lack of trusted childcare options and desire to enable a 'normal' childhood for the child further limit parents' choices
- Healthcare professional support is generally helpful but can lead to frustration and anxiety
- Peer support from other parents caring for children with type 1 diabetes provides valued emotional and practical support
Limitations
This is a synthesis of qualitative studies only, so it captures parents' perceptions and experiences rather than objective measures of outcomes or health impacts. The review does not provide information on how sociodemographic factors (such as income, education, ethnicity) influence parents' experiences, and evidence on newer diabetes technologies is limited in the current literature.
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.