Publication
Parental perspectives on home-based palliative care in children with advanced cancer
Jithin T, Biji M, Gopakumar K, Rizwana K, Nimitha T · Pediatric Hematology Oncology Journal · 2023
Background: Despite the advances in cancer care, a subset of children with cancer will be sent for home-based palliative care. Challenges faced by the family during home-based palliative care are not studied in the Indian context. The purpose of this study is to identify the parental perspectives on the home-based palliative care of children with cancer assessed using an online questionnaire. Method(s): This was a prospective observational study conducted at a paediatric oncology division of a tertiary cancer centre. A group of experts decided the dimensions of the construct, and the questionnaire content was validated. The questionnaire involved responses on the Likert scale (degree of satisfaction), dichotomous nature and open-ended questions. The questionnaire was sent online via WhatsApp or email to parents who were given telephonic guidance to fill out the questionnaire. Result(s): The questionnaire was sent to 56 families, and 53.5% (n=30) responded. The majority of participants (56.6%, n=17) were fathers, and the median age of the children was 9 years. The reason for assigning home-based palliative care was relapse/refractory disease in 83.3%(n=25), and the majority (80%, n=24) had received curative intent treatment. Only 63.3% (n=19) of participants were satisfied with the counselling provided by the treating centre at the time of discharge. The majority (63.3%, n=19) wanted to take the child to their own home for palliative care. Home care was available for only 53.3% (n=16). The median distance to a nearby medical facility was 10.5 km. Most of the participants were unsatisfied with the symptom control, especially pain (47.8%) and Tiredness (87.5%). Complimentary medicine was given to 43.3% (n=13) of children. Most of the psychological (93.3%) and financial support (80%) received was from friends and families. Bereavement care was received by 73.3% of families. Conclusion(s): There is a vast deficit in home-based palliative care among children with advanced cancer, and situational analysis of a larger population is required to plan the interventions.Copyright © 2023
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.