Introduction
Palliative care is a comprehensive set of multidimensional services (physical, psychological, spiritual and social) aimed at improving the quality of life for patients with life-limiting illnesses, such as children with cancer and their families. This care is particularly crucial for pediatric cancer patients and their families, as the disease and its related treatments (chemotherapy, radiation therapy, etc.) impose significant psychological, social, and physical burdens. In Iran, pediatric palliative care is provided in a limited and fragmented manner. Accordingly, the present study determines the quality of palliative care for children with cancer in northern Iran.
Methods
This descriptive cross-sectional study was conducted on 200 parents of children with cancer who were referred to the 17-Shahrivar Educational and Remedial Center of Rasht City, Iran, in 2023. The samples were selected by convenience sampling methods according to the inclusion criteria. The inclusion criteria were parents who had a child with cancer, were interested in participating in the study and could read. Meanwhile, the exclusion criteria were failure to complete the questionnaires and the presence of any mental disorders or physical illness in the parents that prevented their participation in the study. The instrument used included the palliative care quality questionnaire. This questionnaire includes 15 items and 4 dimensions (communication with family, family participation, information sharing among health workers, and support of siblings). The answer to each item includes a range of scores from 0 (never) to 4 (always) and the total score ranges from zero to 100. After entering the data into the SPSS software, version 22, the data were analyzed using descriptive statistical tests.
Results
Demographic data indicated that the average age of parents of children with cancer was 37.83±5.86 years. The majority of caregivers (82%) were female, married (78%), had a diploma (45%) or associate degree (32%) and were housewives (67%). A significant 73% of families reported insufficient income to cover medical expenses. Regarding family structure, 61% had only one child, potentially intensifying the emotional impact of a cancer diagnosis. The assessment of palliative care quality revealed concerning results. The Mean±SD total score was 29.54±0.34 out of 100, which is considerably low. The weakest dimension was support of siblings, scoring 4.1±0.34 out of 15, indicating a neglect of these patients’ needs. Other dimensions also performed poorly: Communication with family (8.3±0.34), suggesting gaps in parent-care team dialogue, family participation (9.0±0.34) and information sharing among health workers (6.8±0.34), implying systemic deficiencies in care integration. These findings paint a picture of a palliative care system struggling to meet the comprehensive needs of families dealing with childhood cancer, particularly in supporting sibling relationships and facilitating effective communication between family and care providers. These deficiencies underscore the need for a fundamental overhaul of pediatric palliative care policies.
Conclusion
The results indicated that the palliative care provided to children with cancer in northern Iran was perceived by parents as suboptimal, requiring significant improvement. This finding aligns with similar studies in low- and middle-income countries, where pediatric palliative care is often limited and inadequate. The lowest scores were observed in sibling support, underscoring the need to address the entire family unit, not just the ill child. Neglecting the psychosocial needs of siblings may lead to emotional and behavioral issues, further exacerbating the family’s psychological burden. Information-sharing among healthcare providers also scored poorly, reflecting weak care coordination and communication between the medical team and parents. This can cause parental confusion, erode trust in healthcare providers, and reduce overall care satisfaction. While family communication and family involvement in care performed relatively better than other dimensions, they remained below desired levels. Parents reported feeling insufficiently included in care decisions, highlighting a gap in family-centered care practices.
Additionally, the family involvement dimension received higher scores in this study. Given that parents of children with cancer bear the primary caregiving role, targeted interventions are recommended to support these families. Such measures would enable them to effectively balance parental responsibilities with caregiving demands and navigate the challenges of their child’s illness. Further research is needed to identify actionable strategies for family support. The findings emphasize the urgent need to enhance palliative care quality, particularly in psychosocial support for families, improve communication between healthcare teams and parents/family members, implement staff training programs, standardize palliative care protocols, and provide infrastructure for holistic family support.
Ethical Considerations
Compliance with ethical guidelines
This study was approved by the Ethics Committee of the Guilan University of Medical Sciences, Rasht, Iran (Code: IR.GUMS.REC.1400.267).
Funding
The present study was financially supported by the Vice-Chancellor for Research and Technology of Guilan University of Medical Sciences.
Authors contributions
Conceptualization, critical revision and study design: Somayeh Pouy, Nazila Javadi Pashaki, Zahra Taheri Azbarmi, Maryam Rasouli and, Bahram Darbandi; Statistical analysis, research, review, editing, and finalization: All authors.
Conflicts of interest
The authors declare that there is no conflict of interest.
Acknowledgments
The authors express their gratitude to the Vice-Chancellor for Research and Technology of Guilan University of Medical Sciences, as well as the administrators and healthcare staff of 17 Shahrivar Hospital in Rasht City, Iran, for their support and collaboration in this research.
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