Nurses’ Perspectives and Experiences in Giving Palliative Homecare to Paediatric Patients from Marginalized Communities in Jakarta, Indonesia

Sammanfattning: The development of palliative care in Indonesia has been slow due to the absence of palliative care guide lines and standards. This results in the limited provision of palliative care where it can only be found available in 14 hospitals in the whole country with a population over 260 million, and the palliative care is basically directed to adult patients. In the paediatric medicine field, the palliative care services in Indonesia is still in its infancy and currently palliative care is served by only one non-profit organization in Jakarta. With around 1,5 million people in Jakarta associated with living in poverty, this organization is focusing on providing free palliative care to children from marginalized communities. The questions that are raised out of these circumstances are how paediatric palliative care is practiced in Jakarta and what the rewarding and challenging parts of the job are. The aim of the study is to describe nurses' perspectives and experiences in giving home-based palliative care to children living with cancer and HIV from marginalized communities in Jakarta. A qualitative study design with content analysis was considered to be the method that fitted the goal of the study best. Semi structured interview was used as data collection method and there were seven nurses who participated in the interviews. The result is described by two main categories; the first category contains different topics that functioned as encouragements to the nurses, and the second category consists of various subjects that contribute to challenges that nurses encounter in their work. Lack of palliative education that lead to certain attitudes in the referral process, misperceptions about pain management and nurses’ stress management are discussed as some challenges encountered in the implementation of palliative care.