After reading this article you should be able to:
- Recognise that children and young people living with type 1 diabetes mellitus (T1DM) can have a higher risk of developing difficulties with their emotional wellbeing, as well as experience family conflict associated with diabetes care;
- Understand that all healthcare professionals working with families living with T1DM can support recognition and development of resilience to reduce the impact of living with this condition and promote emotional wellbeing;
- Understand that pharmacists, along with other healthcare professionals, can promote wellbeing through supportive language and signposting families to support through their GP and diabetes teams.
Living with type 1 diabetes (T1DM) poses a unique set of challenges for children and young people (CYP), as well as their families, and emotional wellbeing can be impacted. T1DM has been described as an ‘always-present’ condition, requiring patients and their families to perform ongoing monitoring of blood glucose levels, regular administration of insulin, counting carbohydrate content in foods, estimating the effects of exercise and responding to unpredictable factors, such as the impact of hormones and other factors outside of the influence of CYP and their families. The demands of caring for people with T1DM are shared between parents and CYP, with the young person gradually taking on more of their care as they get older. The impact of these demands on emotional wellbeing varies and can change over time, even for the same person. There is consensus that there is an increased risk of diabetes distress, which is defined as ‘the negative emotional burden specifically related to living with and managing diabetes’, influencing mood, anxiety, burnout, disordered eating, parenting stress and difficulties with cognitive functioning[3,4].
There has been an abundance of research considering difficulties with emotional wellbeing and the impact of this on self-care in patients with diabetes, but there is also increasing recognition of the opportunities for growth and empowerment following diagnosis and the importance of promoting this[5–9]. Pharmacists are involved in supporting CYP living with T1DM within communities, primary care and secondary care, and may have regular contact with their families; for example, when family members collect regular prescriptions for the patient. As a result, pharmacists may be able to signpost families towards places of support. This article aims to increase awareness of some of the challenges that CYP and their families may experience with their emotional wellbeing in relation to T1DM, share current best practice in using supportive language with families to promote wellbeing and raise awareness of appropriate signposting for families to access support.
Emotional challenges of caring for diabetes
T1DM requires an ongoing process of adjustment as CYP develop. Following a diagnosis of T1DM, it is common for CYP and their families to experience a variety of challenging emotions (e.g. shock, upset, fear and worry) and responses to these emotions can vary. Families have to experience the patient’s illness and process the diagnosis, before embarking on ongoing intensive and complicated diabetes care, as well as worrying about glucose levels being out of range (either hypoglycaemia or hyperglycemia) and coping with the new challenges that arise as children continue to develop[10,11]. The impact of diagnosis can become more apparent after discharge from hospital, as families begin to integrate T1DM care into their daily life and home routines[12,13].
Responding to the demands of T1DM care, and balancing these alongside day-to-day life, can be exhausting for CYP and their families and can impact emotional wellbeing. One in three young people living with T1DM report elevated diabetes distress and are more likely to experience anxiety, depression and disordered eating (including eating disorders)[3,14,15]. Experiencing difficulties with emotional wellbeing can make it more challenging to care for diabetes and this is related to increased risk of diabetes-related ketoacidosis, which can be life-threatening and require hospital treatment. CYP and families can fear hypoglycaemia, which can predicate parenting stress and have a negative impact on care for T1DM. CYP with T1DM can have neuro-cognitive difficulties, impacting learning, memory and executive functioning. These difficulties have been reported to be more likely for those diagnosed at a younger age (<7 years) and those struggling with diabetes care, and can make it more difficult to process information needed to care for T1DM and other aspects of usual daily life[19,20]. The reported impact of T1DM on academic performance varies, with recent studies reporting no difference in performance and some evidence of better performance for those meeting targets for T1DM care compared with those who do not.
Given the demands of T1DM care, it is consistently recommended that CYP and their parents or caregivers share this responsibility, and that working collaboratively, using openness and empathy, leads to better care for T1DM and improved emotional functioning for CYP. Sharing care of T1DM can be more difficult at times of stress and life change, including the transition to adolescence and adulthood, which can lead to family conflict and negatively impact T1DM care. Adolescence is associated with poorer care of T1DM and greater risk of psychological distress for both young people and parents. During adolescence, young people must navigate the conflicts between developmental tasks (including developing their independence and identity) and ongoing brain development (meaning they are present-focused and have an increased tolerance of risk) which can contribute to poorer T1DM care. During this period, parents can experience anxiety about the young person’s reduced priority in caring for their diabetes.
Parents report an immense sense of responsibility to ensure their child is physically well while striving to keep life as normal as possible and are more likely to report higher levels of psychological distress than parents of children living without long-term health conditions. Access to technology, including insulin pumps, continuous glucose monitors and, most recently, hybrid closed loops (HCLs), can help CYP and their families with T1DM care. A recent study reported that HCLs improved health outcomes and care of diabetes, as well as reduced fear and worry of hypoglycaemia for CYP and their parents. However, there has been a reported additional burden of wearing technology and parental reports of a negative impact on family relationships[25–27].
Promoting emotional wellbeing
Research has focused on the development of emotional wellbeing challenges associated with living with T1DM and their impact on self-care. There has been a smaller focus on recognition of opportunities for growth and empowerment and the benefits that are also reported to be associated with living with T1DM[6–8]. CYP have reported benefits, including taking better care of their health and improved family relationships, and young adults have reported increased confidence, organisation, awareness of inner strength, and appreciation of life and health[6,8]. It is important that healthcare professionals understand what can promote emotional wellbeing and reduce distress for CYP and their families living with T1DM, as described in the following sections, and that this can be associated with improved self-care. However, it should be noted that what is supportive and promoting of wellbeing can be very specific to each CYP and their family circumstances. Diabetes resilience, which is defined as ‘a process of harnessing resources to sustain wellbeing during times of adversity’, has been shown to improve T1DM care, physiological outcomes and quality of life[9,29]. It has been shown that resilience and diabetes distress soon after diagnosis predict T1DM care up to three years later and recent interventions designed to promote resilience have reported positive outcomes for CYP with T1DM[30–34].
Using supportive language
An important way that all healthcare professionals, including pharmacists, can support families living with T1DM from diagnosis onwards is through the language used to talk about the condition. Current best practice regarding the use of language has highlighted the impact this can have on emotional wellbeing and the care of T1DM. In recent years, there has been recognition of the impact that the words used to talk about diabetes can have, including the impact this can have on how families think, feel, work together and engage with professionals[36–40].
Research has shown that appropriate language can reduce the disruption experienced by families following diagnosis and can contribute to improved self-care of diabetes and emotional wellbeing[40,41]. Furthermore, language used by healthcare professionals regarding diabetes has been shown to positively impact patients confiding in professionals about challenges experienced in diabetes care and can also positively impact on clinic attendance.
NHS England has published recommendations highlighting the importance of language and the way it is used. It is recommended that healthcare professionals are aware:
- Of the power of language;
- That words can be problematic regardless of the intention of the user;
- That language used should be person first (e.g. ‘person with diabetes’ rather than diabetic person), collaborative and empathic;
- That it is important to listen to the person’s own words and how they want to describe their condition;
- That they should avoid generalisations, judgement and attributing blame.
NHS England provides suggestions regarding words, phrases and approaches considered to be useful in clinical scenarios (see the table for examples). It also provides additional information that is beyond the scope of this article regarding further rationale and people’s lived experiences of the impact of the language used to talk about T1DM, including the importance of checking for personal choice regarding language that individuals find helpful in talking about their diabetes. It is important that professionals use supportive language in clinical contacts but also that this same language is used in discussion about T1DM in research and education.
Signposting for access to emotional support
Pharmacists may notice signs of difficulties with emotional wellbeing through their contact with CYP and their families, in the community or in primary or secondary care settings. This could include a change in the way a person acts, someone appearing more withdrawn or agitated, or a change in frequency of prescription collection. However, it may not be obvious in brief interactions that there are emotional struggles. It may be that it feels appropriate to ask an open question, such as “How are you finding caring for diabetes?”
Emotional support is available for families living with T1DM through GPs and should be offered routinely through CYP’s diabetes teams. The Best Practice Tariff for paediatric diabetes requires annual assessment of emotional wellbeing and access to psychological support, as needed, through diabetes teams for CYP and their families. Diabetes teams are provided with clinical guidance regarding this support by the National Institute for Health and Care Excellence, International Society for Pediatric and Adolescent Diabetes (ISPAD) consensus guidance and the Standards for Psychological Care for Children and Families with Diabetes (currently in draft form)[4,44].
Living with diabetes can be challenging and can impact emotional wellbeing in families. All healthcare professionals, including pharmacists, can support families living with T1DM by being aware of challenges they may face and using supportive language. Pharmacists may be able to recognise emotional challenges that families might be experiencing and can signpost to sources of support available through GPs and diabetes teams.
Pharmacists interested in further information or learning about diabetes and emotional wellbeing may wish to consider further reading, such as the ISPAD Clinical Practice Consensus Guidelines. There are also further opportunities for exploration through online resources, such as The Children and Young Peoples Diabetes Network, the British Society for Paediatric Endocrinology & Diabetes and Digibete. In addition, there are e-courses available from the Centre for Postgraduate Pharmacy Education relating to consultation skills (including for CYP) and mental health available online.
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