14 March 2016
When a child is diagnosed with Type 1 diabetes, their parents may experience long-lasting anguish and unresolved guilt.andof the Centre for Population Health Sciences, University of Edinburgh, present their recent research on this issue, and consider how healthcare professionals can respond.
Children who develop Type 1 diabetes are usually diagnosed after presenting with symptoms such as excessive thirst, frequent urination and weight loss. However, a significant proportion of children are diagnosed with concurrent diabetic ketoacidosis (DKA), often because parents delay seeking medical advice and/or because healthcare professionals find it difficult to diagnose the condition.
In 2012, we undertook an interview study to explore the experiences of parents who care for a child (aged 12 years and under) with Type 1 diabetes to better understand the obstacles and challenges they encountered when trying to manage their child’s condition. Following on from this, in 2015, we conducted focus groups with parents of children with Type 1 diabetes to discuss how people in their position could be better supported to care for their child and improve their glycaemic control. While we had not intended it to be an explicit focus of either study, most of the parents we spoke to wanted, needed and, in some cases, expected, to talk about their experiences of their child’s diagnosis. Not only did parents provide very rich and often lengthy accounts of what had clearly been a very difficult and distressing time for them, many also indicated that they still had unresolved feelings of guilt. Hence, in this article we share these findings in order to raise awareness among healthcare professionals of parents’ unmet needs for support following their child’s diagnosis.
To do this we begin by describing parents’ accounts of events leading up to their child’s diagnosis, then report the emotional impact the diagnosis had upon themboth at the time and subsequently. We conclude by illustrating the challenges parents encountered trying to assimilate information about diabetes management in the aftermath of the diagnosis, drawing throughout upon our published and unpublished work. Further details about ourpublications are given at the end of this article.
Delays to diagnosis
Our interviews and focus groups with parents were often very challenging, with many people becoming visibly upset when they began to recall events surrounding their child’s diagnosis. Irrespective of whether their child had been diagnosed recently, or several years ago, most parents gave detailed and often highly emotive accounts of diagnosis and its impacts. Only a few parents told us how they or other people (eg family members or teachers) had suspected their child’s symptoms were indicative of Type 1 diabetes before arranging an appointment with the doctor and receiving a prompt diagnosis. Instead, most parents described how their child was only diagnosed after a delay, in some cases more than a month after symptoms had first been detected. So what did parents tell us about the reasons for delays to their child being diagnosed.
Confusion and lack of knowledge
All parents who considered that their child had been diagnosed after a delay described how their son or daughter had developed symptoms such as an extreme thirst and/or need to visit the toilet more frequently. However, many of these parents also told us how they had not initially contacted their child’s GP because they did not consider these symptoms to be serious or they did not know these were indicative of Type 1 diabetes. Typically, these parents described having attributed such symptoms to other less serious conditions or minor ailments such as a common cold.
Others talked about having delayed speaking to a healthcare professional because, when symptoms first developed, their child had remained healthy despite their excessive thirst and urination. This included some parents who recalled being confused by their child’s symptoms and having suspected that they were a reaction to a change in routines. For example, one mother described paying little attention to her child’s excessive thirst when abroad in a hot country because the whole family was drinking more frequently. Another parent attributed her daughter’s nocturnal bed-wetting to exhaustion following a busy day playing with friends which meant she had not woken up to go to the toilet.
Attributing symptoms in very young children
Parents of very young children reported particular difficulties understanding and interpreting symptoms. Such parents described having confused symptoms, such as nocturnal bed-wetting and weight loss, with their child’s normal stage of development, as children under 3 yrs often had not been toilet-trained, or because loss of appetite followed by a drop in weight was not uncommon if their child had a cold. Parents of some older children also told us they had not been concerned when symptoms had first developed, particularly if their child had a history of occasional bed-wetting.
Because very young children were unable to articulate feelings of being unwell, parents who delayed seeking help often described only making an appointment with their child’s GP after their child had begun to exhibit extreme behaviours and when symptoms could no longer be explained by other childhood illnesses. In a particularly distressing account, one mother told us how, at first, she had suspected her 18-month-old son’s excessive thirst had been indicative of his need to rehydrate following a urine infection. However, after waiting a further week, she described finding her son desperately drinking his own bathwater, followed by a rapid deterioration in his condition before he was rushed to hospital and admitted in DKA.
Conversely, a significant number of parents described how concerns about their child’s symptoms had prompted them to make a rapid appointment with the GP only to receive advice to treat a viral infection or stomach bug. Some of these parents told us how a repeat appointment or, in some cases, multiple appointments, had been necessary before the correct diagnosis was finally made. Some also told us how initial instances of misdiagnosis had had serious consequences for their child. In one such case a mother who had initially attributed her child’s symptoms to a viral infection described having waited two weeks before making an appointment with the doctor. After being sent home with advice to treat an infection she described having to call an ambulance in an emergency after her daughter had developed DKA.
All parents talked about being extremely shocked when they were informed about their child’s diagnosis. However, parents of children whose diagnosis had being delayed, many of whom knew little about Type 1 diabetes, described feeling distraught and traumatised, particularly if their child had been diagnosed with concurrent DKA. Indeed, many of these parents expressed long-lasting and deep-rooted feelings of guilt about whether they could have done more to detect symptoms sooner. Most worryingly, some parents told us how they continued to relive events leading up to their child’s diagnosis – up to six years later in one instance – and how they experienced persistent feelings of regret and self-chastisement because they had not responded to their child’s symptoms any earlier.
Many of the people we interviewed also described having been so distressed by their child’s diagnosis that they had been unable to comprehend or assimilate clinical advice about diabetes management provided to them in hospital. This included parents who described feeling extremely anxious because they had feared that their child might die. Perhaps unsurprisingly, many of these parents told us that they had returned home feeling ill-prepared and struggling to care for their child. Recalling these experiences, several people suggested that more reassurance and emotional support could be given upfront to help allay such fears and to help better prepare parents to absorb clinical advice about diabetes management before they began to care for their child at home.
In sharing these findings with you, we hope to contribute to campaigns which aim to raise awareness about symptoms of Type 1 diabetes, and to highlight how the condition often develops during childhood in order to lessen the risk of symptoms being confused with other common childhood conditions and ailments. We suggest that healthcare professionals might use consultations to explore with parents the circumstances leading up to their child’s diagnosis, to determine their need for emotional and psychological support.
We would also encourage health professionals to approach parents soon after diagnosis to discuss and address their concerns about Type 1 diabetes. As part of these conversations, healthcare professionals could also offer parents emotional support and reassurance that they are not to blame in instances when their child’s diagnosis was delayed, before providing them with education and advice about managing diabetes in home settings.
1. Rankin D Harden J Waugh N et al (2014).Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes. Pediatric Diabetes 15; 591–598.
2 Rankin D Harden J Waugh N et al (2014).Parents’ information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study. Health Expectations
3 Lawton J Waugh N Barnard KD et al (2015).The challenges of optimising glycaemic control in children with type 1 diabetes: a qualitative study of parents’ experiences and views.Diabetic Medicine 32; 1063-1070.
4 Rankin D Harden J Noyes K et al (2015).Parents’ experiences of managing their child’s diabetes using an insulin pump: a qualitative study.Diabetic Medicine32: 627-634.
5 Lawton J Waugh N Noyes K et al (2015).Improving communication and recall of information in paediatric diabetes consultations: a qualitative study of parents’ experiences and views.BMC Pediatrics 15; 67.
6 Rankin D and Lawton J (2015).Helping caregivers to optimise glycaemic control in children with type 1 diabetes: a qualitative study exploring parents’ experiences and views.Diabetes Care for Children & Young People 4; 51-55