PARENTAL PERSPECTIVE IN PEDIATRIC PALLIATIVE CARE IN INDIA

Abstract

Research in Parental Perspectives are pivotal in gaining understanding of parents’ experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. Furthermore, India being a culturally and religiously diverse country, these two factors play an important role in important decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this study was to understand the first-person perspective of parents when it came their Child’s care to aid effective communication and decision-making. Through a structured questionnaire seven dimensions of parental perspective were measured; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective, and financial perspective. This study also investigated the prevalence of unmet needs among parents of children with cancer. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems, attitudes and needs. Additionally, the perspective of health care team was also taken into consideration. Results showed that younger parents reported higher distress scores, with female caregivers experiencing more fear and sadness than male caregivers. Parents expressed concerns about their child's comfort and disagreed with the notion that their child's pain levels were manageable. Financial strain was a significant issue, and parents reported a high need for support in both treatment costs and everyday finances. Healthcare professionals also experienced severe emotional distress, particularly after an unexpected turn in the child's disease prognosis or death. The study highlights the need for special relief packages and reform in government policies to ease the financial burden, improve hospital infrastructure and add more specialized palliative care centres. The challenges faced during the course of research were unexpected, and sensitization about palliative care and ethical guidelines can help ease these challenges.