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‘Fighting for care’: parents’ perspectives of children’s palliative care in South Tyrol, Italy

Journal title
International journal of palliative nursing
Publication year
Darbyshire, P.; Mischo-Kelling, M.; Lochner, L.; Messerschmidt-Grandi, C.

BACKGROUND: Children’s palliative care in Italy develops comparatively slowly. Recent legislation is enabling, but foundational research exploring parental experiences and perceptions is lacking. AIM: To investigate the experiences and perceptions of parents in South Tyrol, Italy regarding caring for a child with a life-threatening or life-limiting illness. DESIGN: A mixed qualitative design incorporated both an online survey and parent interviews. Using purposive sampling, 13 parents undertook 9 interviews and 7 parents completed the survey. RESULTS: The authors highlight a major parental theme describing difficult relationships with health services requiring them to ‘fight the system’ for services. DISCUSSION: The authors raise a disturbing possibility that such ‘fighting the system’ is now so widely recognised worldwide that it cannot be considered to be accidental. CONCLUSION: The authors recommend the establishment of a specialist, dedicated paediatric palliative care service in South Tyrol with the international recognised values and operating standards that would render such parental ‘fighting’ unnecessary.

Research abstracts