Psychological Experience of Parents of Children With Type 1 Diabetes

Abstract

Purpose The purpose of this review is to describe the prevalence of psychological distress in parents of children with type 1 diabetes (T1DM), the relationship between parental psychological distress and health outcomes, and parents’ psychological experience of having a child with T1DM. Clinical and research implications are presented. Method A systematic mixed-studies review was undertaken to review the quantitative and qualitative research on the parental experience of having a child with T1DM. A total of 34 articles met the inclusion criteria and were included in the review. Results The prevalence of parental psychological distress across all studies ranged from 10% to 74%, with an average of 33.5% of parents reporting distress at diagnosis and 19% of parents reporting distress 1 to 4 years after diagnosis. Parental psychological distress in parents of children with T1DM, regardless of how it was defined, was associated with higher child self-report of stress and depressive symptoms, more problematic child behavior, and lower child self-report of quality of life. Parental psychological distress also had negative effects on diabetes management. Themes of the qualitative synthesis indicated that parents perceived T1DM as a difficult diagnosis that contributed to significant family disruption. Adjustment occurred over time; however, ongoing stress was experienced. Conclusions Screening for psychological distress in parents of children with T1DM is indicated, and preventive interventions are needed.

Treatment Adherence and Psychological Wellbeing in Maternal Carers of Children with Phenylketonuria (PKU)

“…Although at variance with other metabolic conditions such as type 1 diabetes (Driscoll et al 2010;MacKey et al 2014;Skocic et al 2012;Whittemore et al 2012), this is consistent with previous research in PKU (Fehrenback and Peterson 1989;Reber et al 1987) and implies that experiencing increased levels of psychological distress does not affect adherence to treatment.…”

Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences

“…Previous studies have also described the situation as a family disruption from the parents’ perspective, where new family patterns and routines had to be established (Smaldone & Ritholz, 2011; Wennick & Hallström, 2007; Whittemore et al, 2012). Parents reported that they were working hard to establish as normal a life as possible for their child, implying adjustment to daily diabetes management tasks, and becoming more confident in their ability to care for the child over time (Whittemore et al, 2012).…”

“…Parents reported that they were working hard to establish as normal a life as possible for their child, implying adjustment to daily diabetes management tasks, and becoming more confident in their ability to care for the child over time (Whittemore et al, 2012). This is also in line with findings in this study.…”

“…Whittemore et al (2012) found that parents expressed feelings of loss of spontaneity and freedom. In a study by Hatton, Canam, Thome, and Hughes (1995) mothers of infants and toddlers with diabetes reported a diminished bond and a loss of an ideal relationship with their child.…”

“…To learn to give your own child injections and finger pricks could be both a practical and an emotional challenge for parents. In a systematic review, Whittemore, Jaser, Chao, Jang, and Grey (2012) revealed a prevalence of parental psychological distress at diagnosis of between 20% and 30%. Parents have described a feeling of being overwhelmed by the management demands, a feeling that persisted over time when experiencing the complexity of daily management, the constant fear of especially hypoglycaemic events and of new situations coming up (Smaldone & Ritholz, 2011; Sullivan-Bolyai et al, 2003; Wennick & Hallström, 2006).…”