“You Never Exhale Fully Because You're Not Sure What's NEXT”: Parents' Experiences of Stress Caring for Children With Chronic Conditions

Abstract

Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western Australia. Interviews were audio-recorded, transcribed verbatim, anonymized, and analyzed using Interpretative Phenomenological Analysis. Two superordinate themes were identified: (1) Gut instinct to tipping point included parents as unheard experts and their experiences of stress and becoming overwhelmed. (2) Losses and gains covered the parents' identity and relationship challenges and coping strategies with their children's unpredictable conditions. Parents' experiences of stress caring for children with chronic conditions can be applied to the Job-Demand Control-Support Model for occupational stress. Not only does this application provide a useful framework for practitioners but it adds a unique perspective that reflects the dual role of parents in caring for their children with chronic conditions as a parent but also a professional with a 24/7 workload. The parents' experiences highlight a need for improved support access, effective communication between parents and health care professionals, discharge preparation and information provision, and regular screening of parental stress with a referral pathway.

COVID‐19 in Western Australia: ‘The last straw’ and hopes for a ‘new normal’ for parents of children with long‐term conditions

“…41 There is much debate about gender and stress when caring for children with long-term conditions. 13,42 The current study did not aim to study gender differences. However, participating fathers and mothers both tended to their children by attempting to keep them safe, as noted previously.…”

“…The importance of collaborating with parents caring for children with long-term conditions has been described previously. 13,31 L. J. did not participate in the study.…”

“…Parents had been previously recruited via a recognised family support organisation they were registered with. 13 to the email, or if they would prefer to be contacted by telephone and be asked the same questions by a researcher (Box 1). If no response from the email was received within 1 week, a follow-up telephone call and email were made.…”

“…12 Yet, there is a lack of literature on parents' experiences caring for children with long-term conditions, which is already known to cause stress. 13,14 Long-term or chronic conditions among children are rising 15 and refer to a wide range of conditions, illnesses and diseases that tend to be long-lasting with persistent effects. 16 Children with long-term conditions are a vulnerable population dependent on health and education services that have been impacted by the pandemic.…”

“…17 Their parents already face higher mental health burdens as well as higher rates of work loss and financial strain due to COVID-19. 13,18 These families and children have been affected as most services required often cannot be delivered outside of a specialist setting, and it is difficult for parents to replace the support their children usually receive. 19 Families with a child with disabilities are already marginalised.…”