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

Young Children with Type 1 Diabetes: Recent Advances in Behavioral Research

“…T1D management in young children is often described as all-encompassing and unrelenting, and parents of children with T1D endorse significant burdens associated with T1D management [ 37 ]. Harrington and colleagues analyzed survey data from 597 young children <7 years of age with T1D, finding that the following burdens were endorsed by over half of all parents: (1) worry about low blood sugar, (2) worry about future complications, (3) feeling upset when diabetes management is “off track,” and (4) negative impact on sleep quantity and quality [ 38 ].…”

Parents’ experiences of using remote monitoring technology to manage type 1 diabetes in very young children during a clinical trial: Qualitative study

“…4 The burden of care, which falls largely on parents, has been widely reported. 3,[5][6][7] Many parents/caregivers experience high levels of anxiety, with fears about hypoglycaemia being especially prominent. 5,6 Such concerns may be heightened at night and when children are outside parents' direct supervision.…”

“…3,6 The demands of care, and lack of respite, can affect parents' sleep, physical and mental health, personal and professional lives and finances. 7 There is growing interest in whether, and how, new diabetes technologies can improve diabetes management and alleviate the burden of care. 7 Such technologies include continuous glucose monitors (CGMs); devices which stream glucose data from a subcutaneous sensor, worn on the body, to a display on a receiving device (often the insulin pump, though hand-held devices are also available).…”

“…7 There is growing interest in whether, and how, new diabetes technologies can improve diabetes management and alleviate the burden of care. 7 Such technologies include continuous glucose monitors (CGMs); devices which stream glucose data from a subcutaneous sensor, worn on the body, to a display on a receiving device (often the insulin pump, though hand-held devices are also available). 9 Some receiving devices can be set to alarm if glucose levels breach specified ranges.…”

“…[11][12][13][14][15] This is an important limitation given the distinctive challenges parents experience managing type 1 diabetes in very young children. 7 A notable exception is Hilliard et al's study, which explored experiences of glucose monitoring devices. The views expressed here are those of the authors and not necessarily those of the funders.…”