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“The whole day revolves around it”: Families’ experiences of living with a child with Type 1 diabetes — a descriptive study
Julie Symons * Clinical Nurse Specialist – Diabetes (Child and Youth), Southland Hospital, New Zealand Email Julie.symons@southerndhb.govt.nz
Ruth Crawford Principal Lecturer, Nursing, School of Nursing, Eastern Institute of Technology, New Zealand
Dorothy Isaac Senior Lecturer, Nursing, School of Nursing, Eastern Institute of Technology, New Zealand
Shona Thompson Research Fellow, Senior Lecturer, Eastern Institute of Technology, New Zealand
* Corresponding author
What is known about this topic
• Type 1 diabetes is increasing worldwide, causing increasing pressure on health services.
• Diabetes is a family disease, impacting on family roles and ways of parenting.
• Nursing interventions with families of children with diabetes frequently focus on managing the child’s condition.
What this paper adds
• Diabetes management affects all members of the family, particularly concerning food choices and social events.
• Parents’ constant focus is on minimising the disruption to family life caused by living with a child with diabetes, while adjusting to a post-diagnosis “new normal”.
• Parents grieve the loss of a healthy child, and are watchful, worried and frustrated at the lack of understanding of the families’ circumstances from the public and health professionals.
Abstract In this study, parents’ experiences of living with a child with Type 1 diabetes (T1D) were explored. T1D can occur at any age but is particularly demanding when it affects a child. It is a considerable undertaking for parents of a child with T1D to maintain an intensive management regime as well as cope with everyday family demands.
The qualitative descriptive research method involved face-to-face interviews with nine parents/caregivers of a child, aged between four and 14 years, who had been diagnosed with T1D at least 12 months previously. A general inductive approach to thematic analysis was utilised, from which four major themes emerged to describe the experiences of parents of children with T1D: disruption to family life; impact on family relationships; the psychosocial effects of living with T1D; and adaptation to a “new normal”. The results revealed the considerable levels of understanding and support required to competently foster optimal diabetes care for children.
The authors report the experiences and feelings of parents of children living with T1D in New Zealand. The findings are relevant to nurses working with children and families who wish to increase their understanding of the impact of a chronic health condition on families.
Keywords Childhood Type 1 diabetes; parents’ experiences; family adaptation; child health nursing.
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Declarations Competing interests Nil.
Funding Nil.
Ethical approval Eastern Institute of Technology Research Ethics and Approvals Committee, reference number 28/12. Locality Approval from the New Zealand District Health Board in which the study was located.
Guarantor JS.
Contributorship JS conceptualised the study, data collection, data analyses, and main composition of the manuscript. RC, DI, ST conceptualised the study, data collection and revision of the manuscript.
Introduction Type 1 diabetes (T1D) diagnosed in early childhood is a lifelong condition, placing pressure on the affected child and the rest of the family. T1D is an autoimmune condition in which the insulin-secreting beta cells of the pancreas have been destroyed and lose function1. The inability to produce insulin, a protein-storage hormone which regulates carbohydrate metabolism, leads to hyperglycaemia and associated conditions such as glycosuria, ketonaemia and ketonuria1.
Treatment of T1D, aimed to normalise blood glucose levels to target levels of four to eight mmol/l2, involves the administration of subcutaneous insulin, the regulation of carbohydrate intake and activity and frequent monitoring of blood glucose levels3. Maintaining this intensive routine for children with T1D, as well as managing the complexities of busy family lives, is a considerable undertaking for parents4,5.
The aim of this study was to improve health professionals' understanding of the impact on families of living with a child diagnosed with T1D. The study gives voice to parents of children diagnosed with T1D, providing an opportunity for them to speak of their experiences and convey the realities, challenges and struggles of everyday life caring for a child with this condition.
Background A review of related literature revealed three main issues. The first concerned stress levels within the family unit. High levels of maternal stress are found to be associated with the demands of managing a child with T1D6,7. Mothers are often the main caregiver of a child with T1D and the constant vigilance and attentiveness required to ensure their child’s optimal diabetes health is described as being stressful and taxing8,9. This stress is ongoing, as the child’s growth and development requires frequent re-evaluation of previously established management strategies8. Paternal support provides a degree of protection against maternal over-involvement in diabetes care, characterised by behaviours such as hypervigilance and frequent blood glucose testing9, and subsequently has a positive effect on family relationships10,11. Although fathers may be included in initial diabetes care and decision-making,
their role often becomes peripheral to that of the mother over time10; however, fathers also get stressed and feel anxious when caring for a child with diabetes12.
Siblings of children diagnosed with T1D demonstrate keen understanding and insight into issues associated with living with diabetes, including their family role in keeping the affected child safe13,14. Time and priority given to the child with diabetes is generally accepted by siblings, who were consequently viewed by their parents as being well- adjusted and empathetic15,16. Potential feelings of jealousy at perceived preferential treatment given to the child with T1D is tempered by the siblings’ relief that they do not have the disease themselves14.
The second issue arising from literature concerned parental behaviours which significantly changed following a child’s diagnosis of T1D, as adaptation to its associated challenges occurred13. Parents tended to move towards a more controlling behavioural role as demands for continual monitoring and responsive actions ensued8,1. Poor diabetes regimen choices, as well as suboptimal treatment adherence and glycaemic control, were implicated as sources for family arguments5. Parenting styles strong in positive interactions, communication and healthy supervision contributed to optimal diabetes management5. Conversely, controlling and argumentative parental behaviour were ineffectual and led to poorer diabetes outcomes5.
Thirdly, family transition to a new way of living occurred from diagnosis18. Loss and disruption, the first stage of the transition, was initiated by the unexpected diagnosis of childhood T1D. The succeeding stage, acceptance and adaptation, necessitated the implementation of strategies for the family to negotiate for the beneficial transition to a new, albeit different way of living18.
A review of literature revealed a paucity of uniquely New Zealand data relating to how families respond and adapt following the diagnosis of T1D in a child or sibling, thus providing rationale for the study undertaken.
Methods This study utilised a qualitative descriptive method which involved interviewing parents of children who had been diagnosed with T1D for at least one year. The participants were a convenience sample recruited from within the catchment area of a regional District Health Board in New Zealand. The sample involved five mothers and four fathers from six families.
At the time of data collection, children in the families involved in the study were aged between four and 14 years. The youngest age at diagnosis was 11 months, the oldest at 11 years. The length of time since diagnosis ranged from 13 months to seven years. In four of the families, the child with T1D was the older of two children. One family had four children, the oldest diagnosed with T1D. Another was the middle child of three. One family was solo-parented.
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Face-to-face, semi-structured interviews were undertaken during 201219. Most participants chose to be interviewed in their homes. Some were interviewed as a parental couple, while others found it more convenient to be interviewed on their own. All parents were asked to reflect on and describe the impact of their child’s diagnosis on family life. The interviews took up to 50 minutes. Digital audio recordings were fully transcribed and later underwent participants’ verification of accuracy.
A general inductive approach to thematic analysis guided the analysis of data20, which resulted in the identification of recurring themes. Independent cross-checking of the data coding and thematic analysis was undertaken within the research team.
Ethical considerations Ethical approval for this study was granted by the Eastern Institute of Technology’s Research Ethics and Approvals Committee (Ref. 12/28). Locality permission was approval by the New Zealand District Health Board in which the participants were recruited.
Results Four main themes emerged from the parents’ descriptions of having a child diagnosed with T1D.
Disruption to family life The toughest aspect of parenting a child with T1D was the extent to which previous practices and expectations of family life were disrupted by the child’s diagnosis. Daily family practices became disarranged by diabetes care permeating all aspects of family life. Spontaneity all but disappeared. Parents needed to constantly plan ahead to accommodate diabetes care. One mother described this:
You can’t just walk out the door like you used to be able to; you have to plan things all the time. Basically the whole day revolves around it, absolutely everything!
Another parent explained how everyday tasks took longer than before her child was diagnosed with T1D and high levels of family organisation were required to lessen its impact on other family members. Due to the need for intensive diabetes care on a regular and ongoing basis, parents had difficulty finding others willing to take responsibility for the child, even for a short time. One explained:
You know we haven’t had a night off, or a weekend away together at all, ever actually, since [child with diabetes] was born ... That has an impact, you know.
Parents described how regular children’s activities, such as play-dates, sleepovers, dining out, or holidays with non- parental carers, became problematic and concerning for both themselves and their child, usually resulting in these activities being curtailed or discouraged.
Impact on family relationships All parents acknowledged the impact of T1D on individual family members, and on their relationships with each other. A father felt that T1D had such a large presence within his family it had taken on a persona of its own:
We called [diabetes] the terrible third diabetes child for quite a while ... it sort of really invaded our lives.
Parents described the need to keep each other well informed on matters relating to their child’s diabetes health. Their constant exchange of diabetic care information took precedence over other topics, which parents accepted as being necessary and a mostly positive aspect of their relationship. As one parent commented:
We do communicate, should I say it, even better [now] ... We probably take more of a share in some ways.
A common difficulty faced by parents was determining the difference between a child’s diabetes-related issues and what constituted normal childhood behaviour. They felt the need to adjust their usual parenting styles to accommodate effects of potential hyperglycaemic or hypoglycaemic episodes. Parents were reluctant to discipline their child with T1D, recognising that behaviour change could be related to abnormal blood glucose levels.
Parents acknowledged that siblings of the child with T1D were affected by the diagnosis. Siblings were concerned that they too may get diabetes. Siblings had high levels of caring and attentiveness towards the child with T1D. One parent explained:
[Her 12 year old sister] is amazing at school. She is sort of like the adult …. looking after her at school, making sure things go right.
The impact of T1D on relationships and interactions within extended families was also apparent. Parents described how the child with T1D became socially distanced from family members who were reluctant to become involved in diabetes care, which could include administering insulin or monitoring blood glucose levels. The child with T1D tended to be more socially isolated than siblings, with opportunities to spend quality time with grandparents or other family members diminished.
Psychosocial impact A wide range of emotions with psychosocial consequences, often concealed within the busyness of family life, were experienced by the parents interviewed. Feelings included grief at the permanent loss of the child’s previous health status and loss of the family as a unit they had once known. One parent stated:
You go through a grieving process, and you know you grieve for near death ... but you still have to grieve for the loss of your healthy child.
There was general recognition that the T1D diagnosis had changed everything from their child’s normal diet to career aspirations. Feelings of loss and grief were common threads noted in the conversation with the parents in this study, irrespective of the time elapsed since diagnosis.
Being alert and watchful to the needs of their child with T1D was embedded in the parents’ lives. Parents reported a constant need to be aware of all aspects of diabetes care.
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They grappled with the anxious uncertainty of impending hypo/hyperglycaemic episodes, the unknown in terms of their child’s schooling or adolescent years, and the possibility of health complications for their child in the years ahead.
Parents expressed frustration with the unyielding effort required to manage their child’s condition, including the general lack of understanding from others. One father commented:
I think the biggest frustration was when we [were] first diagnosed. You know people just don’t realise the constant- ness of it, that’s what I find tiring.
Parents described feeling judged by others and perceived criticism of their ability to competently care for their child with T1D. One mother stated that she also felt judged by health professionals who were overseeing her child’s clinical care, which manifested as feelings of guilt when health targets were not met. She explained:
It is a constant worry. I always get really worried when I’ve got to go and see [a health professional] even though [child with diabetes] is OK, you know you feel like you’re going to be judged.
Feelings of sadness and compassion were apparent, especially when parents had to undertake invasive procedures on the child with T1D such as blood-sugar monitoring and administration of subcutaneous insulin. Parents’ nurturing role conflicted with being required to perform uncomfortable diabetes-related procedures, as reflected in this parent’s comment:
She [child with T1D] doesn’t like needles or being pricked or anything like that, and even when you still give the injections she says, ‘naa, it doesn’t hurt’, but she still grimaces.
Expressed emotions fluctuated from low self-confidence, to guilt, loneliness and isolation, as described by this mother:
I feel on my own that’s for sure. ‘Cause you always wonder whether the other mums have got perfect children with perfect levels and whether it’s just me, and how come they can deal with it and I can’t, you know? It’s like an uphill battle.
Adaptation — living with diabetes The parents in this study had been living with T1D for periods ranging from 13 months to seven years. This inescapable reality demanded lifestyle changes to accommodate caring for a child with T1D. One father described his family’s lifestyle post diagnosis as a “new normal”. Adaptation to this “new normal” did not necessarily mean that parents ceased to grieve for their previous lives or that the hurdles had all been overcome. The day-to-day reality could remain very difficult, as one participant explained:
There’s nothing good about it, absolutely nothing, and some days it just like, oh, this is his life, this isn’t just going to go away.
Discussion Parenting is fraught with difficulties and complexities. This study has revealed that when a child with diabetes is added to the mix the complexities are amplified. After a diagnosis of T1D, many aspects of a family’s previous life are disrupted by the intrusiveness of T1D care, which affects all members of the family. Parents need to reappraise their lifestyle and adjust routines to accommodate dietary restrictions necessary for the child with T1D. Arrays of T1D care management tasks need to be considered when day-to-day activities and social outings are being planned. Spontaneity disappears and families may become socially isolated if parents are uncomfortable leaving their child with T1D with others unfamiliar with the regimen of care, even though parents may yearn for respite. Parents’ accounts of managing their child’s condition, particularly related to stress and the time, energy and organisation involved, were similar to those found in other studies4,5,21-24. Family organisation requires greater time and effort, with lack of orderliness adversely affecting the ability to cope. Some parents, however, found the need for more order, and that the routines they had been forced to adopt post diagnosis improved family life. Order and organisation sustained optimal family functioning. Children with T1D were encouraged to take control of some aspects of their diabetes care. In addition, this study showed that neither the elapsed time since diagnosis nor the age of the child lessened the level of disruption to family life caused by a child’s T1D. Parents adapted and accommodated family life around the child with T1D to minimise the disruption.
As in other studies, parenting styles changed post diagnosis, as families adjusted to a life that included the complexities related to T1D13,17. Realignment of their previous parenting roles necessitated adaptation to living with diabetes. Parents felt conflicted between being nurturing and having to undertake potentially uncomfortable procedures on their child.
A myriad of demanding emotions are experienced by parents of children with T1D. These include grief at the loss of a healthy child8,17,18, stress associated with continued watchfulness for diabetes-related complications17,18, and frustration at the lack of understanding from others13,17, including health professionals. These emotions may be suppressed and concealed by the all-absorbing provision of day-to-day diabetes care for their child.
Families must adapt to a “new normal” after a child is diagnosed with T1D. This is largely characterised by a sense of acquiescence as parents struggle to minimise the disruption caused by a reality that is beyond their control18. The continuing burden of diabetes care remains challenging for a significant period of time for some families. While every family’s experience is unique, this study showed similarities in the challenges families faced when a child is diagnosed with T1D.
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Limitations Limitations of this study include the small sample size and the limited geographical region from which participants were drawn. Also, participants do not adequately represent diversity with regard to socio-economic status or ethnicity. However, data saturation was achieved within the group interviewed and, therefore, provides an in-depth perspective of the experiences of this group of parents.
Implications for clinical practice/future research The clinical care provided to children with T1D is often focused on achieving clinical targets for wellbeing and optimal health13. These can be largely ineffectual if unaccompanied by an awareness of the wider concerns of the parents who care for the child with T1D and their home environment. A nurse’s understanding of individual family circumstances should form an integral part of effective diabetes care for children.
The importance of relating nursing care to individual family circumstances is key to successful nurse–client working partnerships25. Nurses are central members of diabetes multidisciplinary teams who may have more access than other health professionals to children and their families in the clinical area, home or school settings. This makes possible the opportunity for nurses to build trusting relationships and establish a rapport with parents and their children. Building rapport is critical for creating positive care outcomes and for clients who may then be more willing to respond to the care provided26. This type of relationship also allows nurses to ask relevant questions and, more importantly, to be in the right position to hear the responses and respond appropriately. A better understanding of the reality of parents as carers of children with T1D as provided in this study helps make this relationship possible.
Further research into this area is recommended. Parents have described the difficulties of their situation. Intervention studies examining the effect of provision of psychosocial support to families may further improve nursing practice. Nurses’ experiences of practising with families will also further develop nursing knowledge and practice.
The experiences described by this small group of parents in New Zealand make it possible to more fully understand the effort required to parent a child diagnosed with T1D. The challenges parents encounter and their determination to accommodate living with diabetes have highlighted the importance of nurses acknowledging the psychosocial impact of living with a child with T1D. Parents need support and recognition of the impact of T1D on their family, and nurses are ideally placed to provide this within the framework of the nursing process.
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