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.
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 language | English |
|---|---|
| Pages (from-to) | 542-547 |
| Number of pages | 5 |
| Journal | International Journal of Palliative Nursing |
| Volume | 21 |
| Issue number | 11 |
| DOIs | |
| Publication status | Published - 2015 |
Keywords
- Children's palliative care
- Fighting for care
- Italy
- Paediatric palliative care
- Parents' experiences
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