'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.
Jayne Price, Fiona Hurley, Gemma Kiernan
PMID 36222549WHAT IT FOUND
Parents of children with non-malignant life-limiting conditions described caregiving as an unexpected career.
They struggled to maintain normality, became experts in their child's care out of necessity, and fought constantly for services and equipment. Support from peers and healthcare professionals who respected their expertise was vital.
Key findings
01The central experience was managing an unexpected life, which involved three themes: striving for normality, becoming the expert, and fighting for the child.
02Parents developed expertise in their child's care over time, often driven by a lack of trust in the medical system and a need to challenge professional advice.
03Parents experienced significant isolation and relied heavily on other parents in similar situations for support and information to fight for services.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was predominantly mothers (18 of 23), which may have concealed gender-specific viewpoints. The study was conducted in Ireland, and the healthcare system structure may differ from other countries. The sample lacked cultural diversity, with all participants being White and of Irish descent. Qualitative findings cannot be generalized to all parents of children with life-limiting conditions.
Declared interests
The authors declared no potential conflicts of interest. The work was supported by the All-Ireland Institute of Hospice and Palliative Care (AIIHPC) and the Health Research Board (HRB).
The easy way to misread this
Do not interpret the parents' development of expertise as a failure of the healthcare system or a lack of professional support. The study highlights that expertise often emerges from a necessity to challenge advice and navigate service gaps, reflecting a complex dynamic rather than simple dissatisfaction.