Parents' perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study
- Author:
Kuan Geok Lan
;
Low Wah Yun
- Publication Type:Journal Article
- Keywords:
End of life;
life limiting conditions;
paediatric palliative care;
qualitative research
- MeSH:
Quality of Life;
child
- From:
The Medical Journal of Malaysia
2015;70(5):295-299
- CountryMalaysia
- Language:English
-
Abstract:
Introduction: The importance of Paediatric Palliative Care
(PPC) is increasingly recognised worldwide, with the World
Health Organzsation (WHO) and the American Academy of
Pediatrics (AAP) endorsing the development and wide
availability of PPC. When these children are in the terminal
phase of their illness, PPC should be tailored to the different
needs and desires of the child and the family, with the goal
of providing the best possible quality of life (QOL) for the
days that remain.
Method: Malaysia has yet to develop a national PPC policy.
In anticipation of this, as part of a needs based qualitative
study, parents’ views were solicited, as to the unmet needs
of their children during the terminal phases of their illness.
A purposive sampling was conducted amongst fifteen
parents of nine deceased children (ages 2-14 years, eight
cancer, one Prader Willi Syndrome) who had received care in
the Paediatric Department, Malacca General Hospital, a
Malaysian government hospital. Two focus group
discussions and three in-depth interviews were conducted,
based on a semi-structured interview guideline. The
interviews were audiotaped with permission and the tape
recordings were transcribed verbatim. The data were
managed and analysed by NVivo 9 software using a thematic
analysis approach.
Results: The frequently emerging themes were the strengths
and weaknesses pertaining to the healthcare system,
processes within palliative care. These were symptom
control, closed communication and lack of support and
anticipatory guidance as death approached.
Conclusion: Dying Malaysian children and their families
deserve to receive care that is more consistent with optimal
palliative care.
- Full text:P020151109553280376431.pdf
