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

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

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    1 Citation (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 pages6
    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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