ABSTRACT
PURPOSE: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild. DESIGN AND METHODS: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. RESULTS: Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. PRACTICE IMPLICATIONS: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.
Subject(s)
Grandparents , Anxiety , Child , Family , Humans , Parents , Qualitative ResearchABSTRACT
BACKGROUND: Maintaining a sense of self-care while providing patient centered care, can be difficult for practitioners in palliative medicine. We aimed to pilot an "on the job" mindfulness and compassion-oriented meditation training for interdisciplinary teams designed to reduce distress, foster resilience and strengthen a prosocial motivation in the clinical encounter. METHODS: Our objective was to explore the feasibility and effectiveness of this newly developed training. The study design was an observational, mixed-method pilot evaluation, with qualitative data, self-report data, as well as objective data (cortisol) measured before and after the program. Twenty-eight staff members of an interdisciplinary palliative care team participated in the 10-week training conducted at their workplace. Measures were the Perceived Stress Questionnaire, the Maslach Burnout Inventory, the somatic complaints subscale of the SCL-90-R, the Emotion Regulation Skills Questionnaire, the Hospital Anxiety and Depression Scale, and a Goal Attainment Scale that assessed two individual goals. Semi-structured interviews were employed to gain insight into the perceived outcomes and potential mechanisms of action of the training. T-tests for dependent samples were employed to test for differences between baseline and post-intervention. RESULTS: Significant improvements were found in two of three burnout components (emotional exhaustion and personal accomplishment), anxiety, stress, two emotional regulation competences and joy at work. Furthermore, 85% of the individual goals were attained. Compliance and acceptance rates were high and qualitative data revealed a perceived enhancement of self-care, the integration of mindful pauses in work routines, a reduction in rumination and distress generated in the patient contact as well as an enhancement of interpersonal connection skills. An improvement of team communication could also be identified. CONCLUSIONS: Our findings suggest that the training may be a feasible, effective and practical way of reducing caregiver-distress and enhancing the resources of palliative care teams.
