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The emotional impact of a childhood diagnosis of type 1 diabetes

Parents experience a range of emotions when their child is diagnosed with diabetes. Nurses need an understanding of their grief to be able to support these families as they try to adapt to their "new" lives. Lesley Lowes explains...

Lesley Lowes
RGN RSCN DPSN RNT MSc PhD
Senior Lecturer/Practitioner Paediatric Diabetes
Nursing, Health and Social Care Research Centre
School of Nursing and Midwifery Studies
Cardiff University

When a child is diagnosed with type 1 diabetes, parents go through a steep learning curve as they receive education about diabetes and its management. In addition, they experience a range of emotions initiated by the diagnosis including:

  • Shock.
  • Distress.
  • Disbelief.
  • Guilt.
  • Confusion.
  • Anxiety.
  • Numbness.

Parents often feel an intense grief similar to that normally associated with bereavement, and although this lessens over time, for many parents it does not resolve completely, resulting in "chronic sorrow". Children with diabetes may also have difficulty coping with the diagnosis and the relentless diabetes regimen. As health professionals tend to focus on the practicalities of diabetes management, the emotional needs of families can be overlooked. Nurses need to understand the intensity of the distress experienced by parents, and give them the opportunity to talk about their emotions to help them cope with the implications of diabetes for their child and the family as a whole.

Type 1 diabetes - the basics
Type 1 (insulin-dependent) diabetes is one of the most common chronic childhood disorders and is occurring with increasing frequency. Type 1 diabetes results from the gradual destruction of pancreatic beta (insulin-producing) cells. A consequent lack or relative insufficiency of insulin results in hyperglycaemia, which leads to polyuria, polydipsia, lethargy and weight loss.  If untreated, diabetic ketoacidosis (DKA) occurs and severe fluid, electrolyte and acid-based disturbances will lead to vomiting, dehydration, coma and death.(1)

Management and implications of type 1 diabetes
The management of type 1 diabetes involves the child and family learning how to do blood glucose monitoring, inject insulin, and adhere to a diet containing healthy food choices. Regular carbohydrate-containing meals and learning how to manage exercise are essential to minimise the risk of hypoglycaemia, which if unrecognised or untreated can result in unconsciousness. Children and parents have to learn how to recognise and treat hypoglycaemia.
Usual childhood illnesses (eg, diarrhoea and vomiting) can affect glycaemic control. When children with diabetes are ill, their blood glucose level typically rises and ketones may be produced. This situation usually requires the administration of extra insulin to try to avoid DKA and, sometimes, a short period of hospitalisation to manage the illness and stabilise the diabetes. In addition to the short-term complications of DKA and hypoglycaemia, poor glycaemic control is associated with an increased risk of life-threatening microvascular and neurological complications in later life.(2)

Parents' initial emotions at diagnosis
Parents are initially shocked, partly due to the speed with which diabetes is diagnosed and treatment commences. Diabetes is an outcome many parents will not have foreseen, perhaps expecting a diagnosis of acute childhood illness such as a urine infection, which could be sorted out with a course of antibiotics. However, even parents who suspect diabetes will be shocked at the diagnosis because they commonly "put it to the back of their minds", thinking that this will not happen to their child.
Numbness results from the shock of the diagnosis - parents report being unable to fully function for days after diagnosis, experiencing short-term memory loss and doing things "in a haze".(3)
Distress is caused by the implications for their child arising from the diagnosis. Parents do not want their child to have a lifetime of daily insulin injections and blood glucose monitoring to maintain health and avoid short- and long-term complications. Their overriding fear often concerns hypoglycaemia, particularly severe episodes that can result in their child becoming unconscious. Parents are afraid that this will occur when their child is not with them and that other people will not recognise what is happening or know how to treat it.
Bewilderment is experienced because parents do not understand why this has happened to their child, and health professionals are unable to give an adequate explanation of this. The cause of type 1 diabetes is not yet fully understood and although known to be familial, many parents are unable to report a family history of diabetes. This is very difficult for parents to come to terms with. They ask themselves "why did this happen to my child?"
Guilt arises because parents are unable to lay the blame for the diagnosis on anyone else and often end up blaming themselves. They think about what they might have done or not done to cause this to happen. Mothers, particularly, will continually ask themselves whether they should have breastfed for longer, whether they did anything during their pregnancy that could have caused diabetes, or whether their lifestyle was to blame, regardless of repeated reassurances by health professionals that these were not contributory factors.
Most parents experience confusion because they do not yet have an understanding of diabetes and feel "out of control". They are dependent on health professionals to keep their child safe until they develop knowledge of diabetes and its management. Although parents often become expert in their child's condition, many parents continue to rely on the paediatric diabetes team and their family doctor for help and advice as their child progresses through the different stages of childhood and adolescence to adulthood.

Grief reactions
The distress experienced by parents at their child's diagnosis may be likened to the grief associated with bereavement, perhaps due to parents experiencing a number of losses incurred by the diagnosis.(3,4) These include:

  • Loss of the healthy child they thought they had.
  • Loss of spontaneity, due to a need to "think ahead" about the requirements of diabetes management under any circumstances (eg, having food available to avoid or treat hypoglycaemia).
  • Loss of social support (eg, babysitting, if others are afraid to look after a child with diabetes).
  • Loss of the belief that they can keep their child safe from harm.
  • Loss of control.

Parents' emotional responses to the diagnosis can have a significant impact on their health. Depression is believed to be common, in mothers particularly, after their child's diagnosis, although this has been found to resolve after approximately six months,5 while findings from a more recent study suggest that parents experience post-traumatic stress disorder.(6)
It is important to remember that childhood diabetes has an impact on the whole family, not least the affected child. It is difficult to estimate the impact of a diagnosis of chronic illness on a child's life because this will be determined by a number of influencing factors including:(7)

  • Age at diagnosis.
  • Stage of development.
  • Gender.
  • Personality.
  • Temperament.
  • Coping styles.

Nevertheless, it is likely that a diagnosis of type 1 diabetes, and the associated invasive, unremitting treatment regimen, will impact on most children/young people at some point. Initially, children may "enjoy" the extra attention bestowed on them as parents get to grips with insulin injections, blood glucose monitoring, hypoglycaemia and dietary vigilance. Later on, though, when attention wanes as parents incorporate the diabetes management into everyday life to achieve some kind of "normality", children become increasingly aware that diabetes is for life and may exhibit anger, frustration and sadness at the hand they have been dealt. Resentment can arise if parental anxiety means that they no longer enjoy the freedom they once had, particularly compared to their unaffected peers or siblings. This can lead to behavioural problems, such as the fabrication of blood glucose readings or failing to adhere to the diabetes regimen in order to achieve peer conformity. It is well recognised that glycaemic control typically deteriorates during adolescence, due partly to the hormonal changes that occur during puberty, but also because peer approval and striving for independence become increasingly important during the teenage years.
Interestingly, however, most studies have shown that children with chronic illnesses are as emotionally healthy as their peers and, in some cases, even surpass their peers in confidence and optimism, perhaps because children with chronic illness have faced challenges that most children have not faced and have successfully overcome the hurdles.(8)

Theories of loss and grief
There are a number of time-bound linear theories of grieving that propose that individuals pass through various stages of grief, not always sequentially, but eventually reaching an endpoint such as resolution or acceptance.(9,10) Other theorists, however, suggest that parents of children with chronic conditions may never reach resolution.(11) Over time, as their child grows older, they are reminded by specific milestones, such as starting school, that their child is different when compared to the growth and development of unaffected children. The concept of "chronic sorrow" was introduced to explain the response of lifelong episodic sadness in parents of children with impaired cognitive abilities.(11) This theory disputes that parents of chronically ill children ever reach the closure stage of time-bound models, proposing that parents never fully recover from the impact stage. It is believed that, although parents adjust and adapt to the situation, their efforts do not represent acceptance. Parental emotions vary in intensity, periodically fading and reemerging, specific events triggering memories reminding them of their loss.

Theory of psychosocial transition
The theory of psychosocial transition has allowed greater understanding of the grieving process of parents of children with type 1 diabetes.(4,12,13) This theory proposes that the grief experienced by individuals arises from an awareness of a discrepancy between a world "that should be" and a world "that is". A familiar world suddenly becomes unfamiliar, causing feelings of anxiety and fear. For parents of children with newly diagnosed diabetes, the world "that should be" is their world as they knew it before diagnosis. The world "that is" is their world after diagnosis that needs to incorporate the demands and challenges of having a child with diabetes. However, it is debatable whether these parents ever reach an endpoint in their grieving process. Until recently, little was known about long-term grief in relation to childhood diabetes, but a recent study concluded that parents of children with type 1 diabetes experience chronic sorrow, findings that have implications for health professionals working in this area of care.(14)

Implications for nursing care
The emotional impact of the diagnosis can influence how effectively parents cope with diabetes management, and nurses working with families of children with newly diagnosed type 1 diabetes need an understanding of the intensity of parental grief. Parents may not understand why they feel so distressed and feel guilty about it, particularly if their child appears to be coping well. They will often try to put the situation in perspective by comparing diabetes with, for example, childhood cancer. It is important that parents are made aware that their feelings are not abnormal, and they may need to be given "permission" to grieve.(4) Some parents find it comforting to talk to other parents of children with diabetes, who have lived through the same experience, although this strategy is not acceptable to all. Some may find it difficult to share their feelings with comparative strangers and prefer to work through their emotions on their own or with family and friends.
The existence of chronic sorrow needs to be acknowledged and considered in relation to longer-term nursing care. Nurses need to think about events and milestones that may trigger parental sadness, and offer additional support at these times. For example, when children with diabetes start school, parents need to think about their child's safety in a different way to most parents; teachers need to be taught about diabetes, particularly the management of hypoglycaemia. Commonly, too, a child's readmission to hospital, even 10 years after diagnosis, can evoke painful memories of the time of diagnosis.(14) Furthermore, some parents may feel sad on a day-to-day basis - watching their child injecting, doing blood glucose monitoring, or avoiding the sugary treats enjoyed by unaffected peers, particularly at parties or Christmas.

Conclusion
An understanding of the grief experienced by parents of children with type 1 diabetes, and a knowledge of theories that may provide an explanation for their grieving process can help nurses support these families as they try to adapt and adjust their lives to incorporate the demands of diabetes management.

References

  1. Brink SJ. Presentation and ketoacidosis. In: Kelnar CJH, editor. Childhood and adolescent diabetes. London: Chapman and Hall Medical; 1995.
  2. Diabetes Control and Complications Trial Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin dependent diabetes mellitus. N Engl J Med 1993;329:977-86.
  3. Lowes L, Lyne P, Gregory JW. Childhood diabetes: parents' experience of home management and the first year following diagnosis. Diab Med 2004;21:531-8.
  4. Lowes L, Gregory JW, Lyne P. Newly diagnosed childhood diabetes: a psychosocial transition for parents? J Adv Nurs 2005;50:253-61.
  5. Kovacs M, Finkelstein R, Feinberg TL, Crouse-Novak M, Paulauskas S, Pollock M. Initial psychological responses of parents to the diagnosis of insulin dependent diabetes mellitus in their children. Diabetes Care 1985;8:568-75.
  6. Landolt MA, Ribi K, Laimbacher J, Vollrath M, Gnehm HE, Sennhauser FH. Brief report: posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. J Ped Psychol 2002;27:647-52.
  7. Cooper C. Continuing care of sick children. Examining the impact of chronic illness. Wiltshire: Mark Allen Publishing; 1999.
  8. Deaton AV. Chronic illness. Richmond VA: Children's Hospital; 2006. Available at: http://childrenshosp-richmond.org/families/health/chronic_ill.htm
  9. Kubler-Ross E. On death and dying. London: Tavistock; 1970.
  10. Worden JW. Grief counselling and grief therapy.  A handbook for the mental health practitioner. 2nd ed. London: Routledge; 1995.
  11. Olshansky S. Chronic sorrow: a response to having a mentally defective child. Social Casework 1962;43:190-3.
  12. Parkes CM. Bereavement as a psychosocial transition: processes of adaptation to change. In: Stroebe MS, Stroebe W, Hansson RO, editors. Handbook of bereavement. Theory, research and intervention. Cambridge: Cambridge University Press, 1993. p. 91-101.
  13. Parkes CM. Bereavement. Studies of grief in adult life. 3rd ed. London: Routledge; 1996.
  14. Bowes S. Emotional adaptation and adjustment in parents of children with type 1 diabetes 7-10 years after diagnosis. Unpublished MSc dissertation, Cardiff: Cardiff University; 2007.