Unmet palliative care needs of a child with cancer in Indonesia

Abstract

� Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (<20%). To bridge this gap, provision of aggressive curative treatment has been prioritized in latter countries. Palliative care (PC), by contrast, has received little or no attention � When children who can no longer be cured from cancer continue aggressive treatment, they may suffer unnecessarily from pain, discomfort and low quality-of-life during prolonged periods � In many LMIC, families are often not given the opportunity to participate in decision-making whether they want to extend the life of their children or focus on relieving pain and discomfort � This case report illustrates difficulties that Indonesian families may face when their child is diagnosed with cancer, receives intensive chemotherapy despite poor prognosis and severe side-effects, and is not informed about choices of treatment children have during final illness � This study highlights the importance to start PC immediately at diagnosis. Both physical and psychosocial wellbeing of patients need to be closely monitored through regular symptom burden assessments. Training on open communication in PC is required in universities and hospitals to enable shared decision-making and improve quality-of-life of children and their families

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

“…This ethical dilemma continues to be an area that requires more support and training for pediatric oncology nurses (Jewitt et al, 2023;Richoux et al, 2022). In addition, individual and environmental factors significantly influence end-of-life experiences and interactions in pediatric oncology (Joren et al, 2023;Hirata et al, 2023;Vassileva et al, 2023) The last theme of empowerment, which is realities and ideals, resonates throughout the study. Empowering patients and their families require acknowledging the gaps between reality and ideals.…”

“…This ethical dilemma continues to be an area that requires more support and training for pediatric oncology nurses (Jewitt et al, 2023; Richoux et al, 2022). In addition, individual and environmental factors significantly influence end‐of‐life experiences and interactions in pediatric oncology (Joren et al, 2023; Hirata et al, 2023; Vassileva et al, 2023). In the study by Dos Santos et al, it was emphasized that in light of the conflicts that pediatric oncology nurses experience while dealing with end‐of‐life children and bereaved families, their strategies are individual practices such as getting away from the situation or seeking introspection, or social practices such as communicating with the other team (Dos Santos et al, 2023).…”

Global psycho‐oncology in low middle‐income countries: Challenges and opportunities

“… 14 have provided a step‐by‐step guide to the cultural adaptation process for cancer‐related interventions. Five studies focus on country specific issues within Kenya, 24 Ghana, 25 Uganda, 26 Indonesia 27 and Brazil. 28 All link together to highlight a common thread that psychosocial care is developing in LMICs but remains in need of improved access to resources.…”

Supportive Care in Pediatric Oncology: Opportunities and Future Directions

“…In some settings, within certain treatment populations (e.g., stem cell transplant), established protocols for PPC referrals either require every patient to receive an initial assessment or identify patients experiencing certain situational "triggers", such as high-risk disease, organ dysfunction, second transplant, or pediatric sibling donors, to receive an automatic escalation in supportive care [48]. Nevertheless, many families of patients in low-and middle-income countries are not given the opportunity to participate in discussions to determine goals of care or how to prioritize the quality of life and focus care on the relief of pain and discomfort for their child [49,50]. Much of the available literature conveys significant benefits to patient and family well-being when PPC is introduced early in care, and increases as appropriate based on medical status, prognosis, and patient and family priorities [51,52].…”