Understanding Parental Perspectives in End-of-Life Care
As practitioners dedicated to improving outcomes for children, it is crucial to incorporate data-driven insights into our practice. The research article "When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of-life care" provides invaluable insights that can enhance our understanding and approach to paediatric palliative care.
Key Findings from the Research
The study surveyed 135 bereaved parents in Switzerland to assess their experiences and satisfaction with end-of-life (EOL) care for their children. The research revealed generally positive parental experiences and high satisfaction levels across six quality domains, including support of the family unit, communication, shared decision-making, relief of pain and other symptoms, continuity of care, and bereavement support.
Implementing Research Outcomes
Practitioners can enhance their skills by focusing on the following areas identified in the research:
- Communication: Ensure that communication with parents is clear, honest, and sensitive. Despite high satisfaction scores, the study noted instances of negative experiences due to insufficient or insensitive communication. Practitioners should strive to provide consistent and empathetic information.
- Shared Decision-Making: Engage parents actively in decision-making processes. The study highlighted that some parents felt excluded from critical decisions. Implementing a shared decision-making model can empower parents and ensure their perspectives are valued.
- Symptom Management: Focus on effective pain and symptom management, particularly for nonverbal children with neurological impairments. The study found that parents of children with neurological conditions reported lower satisfaction with pain management.
- Continuity and Coordination of Care: Improve coordination between inpatient, outpatient, and home care services. The research indicated that continuity of care was the lowest-rated domain, suggesting a need for better integration of services.
- Bereavement Support: Provide ongoing support to families after the child's death. Maintaining contact and offering bereavement services can significantly aid parents in their grieving process.
Encouraging Further Research
While the study offers valuable insights, it also underscores the need for further research to explore the nuances of parental experiences across different diagnostic groups. Practitioners are encouraged to contribute to this body of knowledge by conducting research that focuses on the specific needs and challenges faced by families in various contexts.
To read the original research paper, please follow this link: When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of-life care.
