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Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings

Sumarti Endah Purnamaningsih Maria Margaretha, Sri Mulatsih, , Hari Kusnanto

Abstract: Background: Many children with cancer are faced with fatal diagnosis and unbearable pain, and palliative care is highly needed. In Indonesia, the provision of palliative care is only accessible in a few major cities where most cancer treatment facilities are located and development has been slow. While, the implementation of family center care identified a number of challenges related to family empowerment to be included in the development and implementation of interventions. Objectives: This study aimed to assess the perspectives of nurses regarding family-centered treatment in Indonesia’s palliative wards for children with cancer. Methods: A qualitative approach to content analysis was employed. The study participants were 10 primary nurses in pediatric units who worked with cancer patients regularly. These participants were purposefully chosen. The interview session included 10 study participants. Participants’ work experience ranged from 2 to 11 years, and their age ranged from 27 to 51 years. Data were collected via face-to-face, semi-structured interviews that lasted for an average of 30 to 45 minutes. The interviews were performed to explore the participants’ understanding about the definition of family-centered palliative care, including the needs and obstacles to implementation. These were analyzed using content analysis methodology that includes five main segments: introduction, coding, theme creation, thematic classification, and reporting. Results: The themes from the study included an appreciation of palliative and family-centered care, palliative care capability and family-centered care, and multidisciplinary cooperation under three principles concerning needs and barriers. Conclusion: Integrating family-centered care approaches in providing palliative care for children with cancer as well as the resources required for such programs to be implemented by hospital management in working toward improved quality care for patients. Communication and continuity of care remain a challenge; training and equipping clinicians with skills and confidence to carry out family-centered care approaches and palliative care for children with cancer can aid in this process.
Keywords: children / family centered / palliative care / centered care / Palliative Wards / structured

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