BJD

A systematic review of parents’ experiences of raising a child with type 1 diabetes

Saffron Simpson, Paul Hanna, Christina J Jones

School of Psychology, University of Surrey, Guildford, UK

Address for correspondence: Miss Saffron Simpson
Room 12b AC 04, School of Psychology, University of Surrey, Guildford, GU2 7XH
E-mail: saffron.simpson@surrey.ac.uk

https://doi.org/10.15277/bjd.2021.291

Abstract

Background: There are currently 1.1 million young people estimated to have type 1 diabetes (T1D) across the world. A diagnosis of T1D impacts not only the children’s lives but also those of the parents.

Aim: To understand the experiences of parents raising a child with T1D.

Methods: For inclusion, studies had to report qualitative data on parents' experiences of raising a child with a diagnosis of T1D. Parents included mothers, fathers or any other primary caregivers. Eleven databases were systematically searched for relevant articles. Studies were quality assessed and study characteristics extracted. The data were thematically synthesised.

Results: Thirty-two studies met the inclusion criteria. Thematic synthesis yielded two analytical themes: ‘adjusting to a new reality’ and ‘navigating appropriate T1D support’. The five descriptive themes that contributed to these were ‘distressing diagnostic experience’, ‘change of life routine’, ‘enablers and barriers to support from others’, ‘reconstruction of family dynamics’ and ‘psychological impact over time’.

Conclusions: Difficulties parents encounter in support received from school and healthcare professionals are highlighted. Parents’ mental health needs should be attended to throughout T1D clinic appointments. Future research should explore fathers' experiences, as well as characteristics (such as employment status, education, relationship status and underlying mental health issues) which may affect parental experience, given the paucity of existing evidence.

Br J Diabetes 2021;21:43-58

Key words: type 1 diabetes, parents, children, systematic review, diabetes mellitus, qualitative research, experiences, carers

Introduction

A diagnosis of type 1 diabetes (T1D) impacts not only the life of the child but also the parents. There has been a wealth of research conducted into the experiences of parents raising a child with T1D. The existing literature reports an impact on, but not limited to, psychological well-being,1 finances,2 diet,3 family life4 and social life.5 Whilst a mixed methods systematic review on psychological experiences of parents of children with T1D provided important information on the prevalence of psychological distress,6 the authors excluded studies that did not include parental psychological outcomes and studies that focused solely on family adjustment or functioning. Consequently, there may be important research pertaining to parents' experiences that were excluded. The aim of this current systematic review is to update and extend on the previous review by collating and synthesising the qualitative evidence on the broader range of parental experiences of raising a child with T1D. Therefore, this review offers a contribution to clinical practice by informing healthcare professionals about parental experience to enhance delivery of care to families and support T1D management.

Methods

This systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines7 (Appendix 1 available at www.bjd-abcd.com) and was prospectively registered on Prospero (CRD42020173872). Studies were eligible for inclusion if they were (1) qualitative or mixed methods in design where qualitative data could be extracted and (2) report parental (age >18 years including mothers, fathers or primary caregivers) experiences of raising a child (aged 0–17 years) with a diagnosis of T1D. Studies were excluded if the child had a diagnosis of type 2 diabetes or had another comorbid long-term condition. Only studies in English were included and there was no restriction on publication date.

Eleven databases were systematically searched from their inception to May 2020 (Appendix 2 available at www.bjd-abcd.com). Articles were screened for relevance against the eligibility criteria at the title and abstract stage. The reasons for exclusion can be found in the PRISMA flow chart (Figure 1). Reference lists of the relevant studies were also searched for any additional research that may not have been captured by the original search.

693 Simpson Figure 1

To appraise the quality of the relevant studies, the Critical Appraisal Skills Programme (CASP) qualitative checklist was used.8 This was initially undertaken by the first author, with a subset of papers checked by the last author. No articles were excluded based on study quality.

Thematic synthesis9 was used to analyse and integrate the qualitative data, involving line-by-line inductive coding of the entire results section for each study. Codes were then collated and reviewed to examine for differences, patterns and similarities. This allowed the codes to be organised into groups for descriptive themes to be constructed. In order to address the research question and go beyond the content of the primary studies, analytical themes were then derived. The descriptive themes with illustrative quotations are detailed in Table 1.

693 Simpson Table 1a 693 Simpson Table 1b 693 Simpson Table 1c 693 Simpson Table 1d

Results

Study characteristics and quality

The systematic search yielded 7,309 results after duplicates were removed, with 32 studies published between 1995 and 2020 included (Figure 1). There were 1,417 participants across the 32 studies; 25 studies provided parents’ gender, 526 of which were mothers (72%) and 149 fathers (28%). The ages of parents ranged from 22 to 58 years and the age of the child ranged from 2 to 17 years. Only seven studies reported on ethnicity, of which six reported that participants were either entirely or majority white. Studies were predominantly conducted in Europe (n=16). The data collection methods varied but the predominant approach was interviews (n=27) (Table 2).

693 Simpson Table 2a 693 Simpson Table 2b 693 Simpson Table 2c 693 Simpson Table 2d 693 Simpson Table 2e 693 Simpson Table 2f 693 Simpson Table 2g 693 Simpson Table 2h 693 Simpson Table 2i 693 Simpson Table 2j 693 Simpson Table 2k 693 Simpson Table 2l 693 Simpson Table 2m

The ‘relationship between researcher and participants being adequately considered’ received the highest amount of ‘unclear’ scoring across the studies. All 32 studies were assessed as having a clear statement of the aims of the research (Q1) and qualitative methodology being appropriate (Q2). Overall, 26 of the 32 studies were judged as adequately reporting at least seven of the 10 CASP checklist items (Table 3).

693 Simpson Table 3a 693 Simpson Table 3b

Thematic synthesis findings

Adjusting to a new reality

This analytical theme reflects the new reality parents face whilst raising a child with T1D, beginning at diagnosis and involving changes to daily routines, dietary habits and learning new caregiving skills. This new reality influenced their decision-making about celebrations, family outings and future children. Parents were affected financially and emotionally, with the emotional impact starting at diagnosis. With time, parents became used to this new reality and it became part of daily life. This analytical theme is explored further below through the descriptive themes it was derived from: ‘distressing diagnostic experience’, ‘change of life routine’ and ‘reconstruction of family dynamics’.

Distressing diagnostic experience

This theme was present in 20 of the 32 primary studies which represents 63% of the studies (Table 4). Parents reported a distressing diagnostic experience that brought up a range of unsettling emotions such as shock, disbelief, anger, stress, anxiety, grief and sadness. Some parents were overwhelmed and tearful at diagnosis, describing it as extremely painful and traumatic. Some of the shock at diagnosis was explained as being due to the lack of understanding of T1D, incorrectly assuming this was not a condition which affected children. Parents experienced guilt at not noticing symptoms and often blamed themselves for T1D; trying to pinpoint the cause through examining their care of the child. The route to diagnosis was not always straightforward; reasons included misdiagnosis by doctors, parents not recognising T1D symptoms or attributing symptoms to other common conditions, which sometimes resulted in delaying seeking medical support. In some situations this delay in receiving an accurate and timely diagnosis led to the child’s health deteriorating to the point of hospitalisation, which was distressing for parents. Parents had difficulty initially accepting the diagnosis although most came to terms with the diagnosis with time.

Change of life routine after diagnosis

This theme was present in 27 of the 32 primary studies which represents 84% of the studies (Table 4). Parents described a change of life routine after receiving the diagnosis that involved complex T1D management. Parents expressed concerns about their ability to be able to care and cope with the complex regimens. Parents learnt multiple new T1D-related caregiving skills such as administering insulin and understanding behavioural cues that may indicate hyperglycemia or hypoglycemia, which could change as the child developed. For example, one parent described that their child would be argumentative when their bloods were high and go very pale when their bloods were low. Parents struggled with the unpredictability of T1D, specifically around blood glucose levels. This unpredictability resulted in parents closely monitoring their children and blood glucose levels. Parents described the incessant nature of managing the disease and the time-consuming day-to-day responsibilities. Parents experienced a loss of spontaneity and flexibility in their daily routine as planning was always required, especially with food and play or activities. There were financial implications of raising a child with T1D, whether this was from a dietary perspective of buying sugar free/low sugar food, or through T1D care such as insulin and diabetes-related supplies. The cost of T1D care was a particular concern for those parents who did not have adequate funding for this through their country’s healthcare/insurance. This was prevalent in seven studies which were undertaken in Jamaica, Brazil, Egypt, Ghana, Iran and USA.

Parents' employment was also impacted, with some parents taking on more work to cover the cost of T1D treatment and others having to give up work or change to part-time because of managing T1D care, such as frequent doctors’ appointments. Dietary requirements were described as complicating celebrations such as birthday parties or family meals out. After time, parents reported the change in life routine being a new normal and part of daily life.

Reconstruction of family dynamics

This theme was present in 21 of the 32 primary studies which represents 66% of the studies (Table 4). Family life was experienced as being disrupted for everyone involved as they all had to adapt to a new routine. Some parents reported a positive impact on the parental relationship and family structure, such as better communication with their partner, better family cohesion and healthier lifestyles. Other parents reported negative impacts, such as deterioration in emotional and physical intimacy and spending time together due to sharing care equally. Parents described T1D as being the main topic discussed, and for some this was seen as a positive part of the relationship; however, other parents felt their whole life was now taken up with T1D-related tasks. Parents described their parental role changing to more of a supervisory and controlling role. In parental relationships where there were unequal divisions of T1D care or lack of spousal support, this often led to resentment, tension or, in some cases, ending of their relationship. Parents reported conflict between siblings as a result of the child with T1D getting more attention from the parents although, in some families, siblings were described as being caring towards their sibling with T1D. As a result of raising a child with T1D, parents expressed concerns about having future children in case they too received a diagnosis of T1D.

693 Simpson Table 4a 693 Simpson Table 4b

Navigating appropriate T1D support

This analytical theme illustrates that the emotional impact of raising a child with T1D persists past diagnosis due to the demands of T1D management and ongoing concerns about their child. The systems surrounding parents played a key role in how supported they felt whilst raising a child with T1D. Parents had difficulties finding and trusting caregivers to provide appropriate support to their child. They had concerns about nursery and school management of T1D and spent time advocating for their child to ensure they received appropriate care. T1D care teams were identified as a key source of support, although parents had mixed experiences of their encounters with them. Parents experienced a lack of understanding from others of the reality of living with T1D, both from their social support network and professionals. Parents longed for more emotional support to be offered by professionals. This analytical theme is explored further below through the descriptive themes from which it was derived: ‘psychological impact over time’ and ‘enablers and barriers to support from others’.

Psychological impact over time

This theme was present in 28 of the 32 primary studies which represents 88% of the studies (Table 4). Parents reported feeling overwhelmed, stressed, depressed, guilty, irritable and exhausted from the demands of T1D management. Parents reported a fear of hypoglycemia, which intensified at night-time. Parents struggled with sleep deprivation, which was often linked to night-time fears of finding their child unconscious or dead, leading to them getting up at night to check on their child. In the most severe cases, some parents had considered ending their life in the early weeks following diagnosis while others had been hospitalised. Parents experienced numerous concerns about their T1D child's future including: the child's current and future independent T1D management, long-term health complications including death, and the psychological impact on their child. When parents experienced a crisis or traumatic event such as severe hypoglycemia, their confidence fell and their anxiety increased. Some parents had fears and difficulty with giving injections. Parents had worries about how care providers such as nursery or school would manage their child’s T1D care. There were some parents who tried to remain positive by looking at positive aspects of the situation and hoping for a cure for T1D. Some parents also reported feeling like they were coping most of the time.

Enablers and barriers to support from others

This theme was present in 25 of the 32 primary studies which represents 78% of the studies (Table 4). Parents felt there was a lack of understanding from others about how T1D is caused or managed – for example, parents felt that others did not understand the constant nature of T1D care. Parents reported difficulty finding caregivers who were able to engage with T1D management; this was partly due to some caregivers not feeling comfortable giving insulin injections. Parents also had difficulty trusting others with providing appropriate care to their child, as they wondered whether they would be able to attend to T1D emergencies – for example, being able to identify and treat hypoglycemia. However, for some parents they did not have a choice but to trust other caregivers due to work commitments. Some parents received support from family and described them as playing an important role in caring for their child, but for other parents there was a lack of support from family who were reluctant to get involved in care. Parents reported a negative impact on their social life as a result of T1D care and management. Parents were concerned by the lack of support from school in adhering to T1D management – for example, not attending to the child’s dietary needs or inappropriate care by putting unnecessary restrictions on the child (ie, refusal of snacks or calling an ambulance rather than giving an injection). Parents also experienced school staff as generally lacking sufficient knowledge about T1D which caused concern. However, there were some parents who reported receiving good support from school – for example, some schools had extra staff to support their child with T1D care and provided regular communication with parents.

The T1D healthcare team was viewed as a helpful, valuable resource whose availability and support after discharge was important. Although some parents felt they received a lack of professional support and that the T1D team lacked up-to-date information in developments, giving conflicting advice from within the team. Parents felt that T1D clinic staff did not understand the reality of living with and managing T1D, and had unrealistic expectations of what can be achieved. This resulted in some parents feeling anxious going into clinic appointments as they felt they were going to be reprimanded or judged despite their best efforts. Some parents described positive experiences of the clinic as they felt reassured that they were doing a good job and received good support from T1D professionals. There were some parents who felt there was a lack of emotional support offered and wanted better access to mental health services. Parents advocated for their children to protect them from being mistreated when others may not understand or accommodate their needs. Parents viewed participating in T1D fundraising events and interacting with other families living with T1D as helpful and important, and also reduced feelings of isolation, gave a sense of belonging and instilled hope.

Discussion

In this review, 32 studies on parents' experiences of raising a child with T1D from 13 countries were thematically synthesised. The findings revealed that, when a child is diagnosed with T1D, the parents enter a new reality of living with T1D to which they have to adapt. Highly prevalent from the studies was the psychological impact over time, with parents reporting feeling overwhelmed, stressed and depressed, which was likely as a result of the change of life routine.

These findings support the systematic review by Whittemore et al,6 with parents describing diagnosis as an emotionally distressing experience, family life being disrupted by T1D and the psychological impact of raising a child with T1D. Similarly, a review that examined parenting stress among caregivers of children with chronic illness10 found parents experienced significantly greater general parenting stress than caregivers of healthy children, and this stress is also associated with poorer psychological adjustment. This would suggest that this current review sheds further light on the fact that, despite the recommendations made in these reviews and probable subsequent developments in clinical practice or management of T1D, parents still experience difficulties in these areas.

This qualitative synthesis provides an important original contribution to knowledge by highlighting the specific difficulties some parents experience in receiving appropriate support from school and in T1D clinic appointments, with some parents feeling that clinic staff do not understand the reality of living with and managing T1D, which has the potential to impact on their psychological well-being.

In line with National Institute for Health and Care Excellence (NICE) guidelines for T1D management,11 school staff supporting children with T1D should have regular liaison with diabetes teams with adequate information provision and parents should be offered signposting to diabetes support groups and organisations. There also needs to be regular screening for parental mental health difficulties, which has been recommended to occur from the point of diagnosis,12 especially for suicidal thoughts in the immediate post-diagnosis period. If a need is indicated, parents should be provided with access or appropriate referrals to mental health professionals.11,13 Psychological interventions and parenting interventions can help to reduce parental ditstress.14,15

Healthcare professionals should be aware of the impact of raising a child with T1D on the parents' relationship; they should enquire and assess for family conflict, negotiating a plan for resolution or referring to appropriate mental health support where appropriate.13 NICE recommends that parents who are experiencing diabetes-related family conflict should be offered specific family‑based behavioural interventions, such as behavioural family systems therapy.11 This aligns with existing research that has found behavioural family systems therapy, focused on communication styles, results in reduced diabetes-specific conflict.16 Intervening early could have positive outcomes and potentially keep families together, therefore maintaining support for the whole family.

Healthcare professionals should be aware of the anxiety parents may feel about clinic appointments and the impact this can have on their mental health if they feel they are not able to live up to staff expectations. Healthcare professionals should ensure they are realistic with their expectations, empathic, praise and acknowledge parents' effort when they are trying their best, whilst avoiding judgement to help reduce any feelings of anxiety and blame. Additionally, where possible they should ensure that conflicting advice isn't given to parents from different clinic staff.

The strengths of this review include the extensive amount of data over 25 years across multiple countries and the comprehensive analytical approach to searches and data analysis, as well as including a critical appraisal of all studies and attempting to contact authors where information was unclear. Additionally, it was prospectively registered on Prospero to reduce the potential for bias and enhance transparency in outcome reporting. A limitation of this review is that language restrictions were in place which meant that relevant data may have been missed. Moreover, there was limited diversity in the sample of participants in relation to reported ethnicity and gender, which has the ability to impact on parental experiences. There was a notable difference in mother and father participants, with the perspectives of fathers being infrequent. Other areas which can influence the parental experience include characteristics such as employment status, education, relationship status and underlying mental health issues/anxieties. Future research should investigate these areas and have a broader diverse participant pool that is reflective of the population, which should include more fathers and participants from more culturally diverse backgrounds to ascertain their experience and enhance their voice within the literature.

693 Simpson Key Messages

Author contributorship CJ assisted with cross-referencing and rating of study quality. All authors assisted in interpretation of themes, revised the manuscript and approved the final version.

Conflict of interest None.

Funding None.

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Appendix 1. PRISMA 2009 Checklist

693 Simpson Appendix 1 a 693 Simpson Appendix 1 b

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097.
doi:10.1371/journal.pmed1000097

For more information visit www.prisma-statement.org

Appendix 2. Search Strategy

Eleven databases (Ebscohost [CINAHL, Medline, Psycharticles, Psychinfo, Psychology and Behavioural Sciences, Child Adolescent Development Studies], Web of Science, Cochrane Library, PubMed, Scopus and British Nursing Index) were systematically searched from their inception to May 2020. The search terms used were: (1) parents or caregivers or mother or mum or mom or father or dad or parent or guardian, (2) diabetes, (3) Challenge* or attit* or experience* or view* or perce* or cop* or behav* or diffic* or belief* or rais*.

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