'Fighting for care': Parents' perspectives of children's palliative care in South Tyrol, Italy

Philip Darbyshire, Maria Mischo-Kelling, Lukas Lochner, Caterina Messerschmidt-Grandi

Research output: Contribution to journalReview ArticleResearchpeer-review

2 Citations (Scopus)

Abstract

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.
Original languageEnglish
Pages (from-to)542-547
Number of pages5
JournalInternational Journal of Palliative Nursing
Volume21
Issue number11
DOIs
Publication statusPublished - 2015

Keywords

  • Children's palliative care
  • Fighting for care
  • Italy
  • Paediatric palliative care
  • Parents' experiences

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