A qualitative study of health care professionals' views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. MethodsA qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. ResultsTwenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff.Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family

Home-Based Care for Special Healthcare Needs: Community Children’s Nursing Services

Background: Community children’s nursing services (CCNS) provides nursing and supportive care, ranging from relatively simple to highly technological interventions, to children and young people (0–18 years) within the family home. Objectives: The aim of this study was to elicit the perspectives on and experiences about CCNS in England in relation to things that are working well or that could be improved and the vision for services. Methods: Using a qualitative approach, underpinned by an Appreciative Inquiry philosophy, researchers worked closely with advisory groups (six children and young people, four parents, and five professionals) to design and implement the study. Arts-based participatory appreciative workshops were held in nine regional locations in England; shared activities were undertaken to elicit participants’ experiences. Participants unable to attend the workshops were able to contribute via semistructured interview (face to face or by telephone) or by a dedicated blog or e-mail. Results: Thematic analysis was used, and 214 people participated: families (n = 82), children (n = 27), and professionals or stakeholders (n = 105). Things that were working well were effective communication, robust leadership, actively enabling the child’s care to be sustained at home, and partnerships based on mutual trust. Problems relating to feelings of marginalization, ineffective commissioning, under provision of services and hours of service availability, lack of equipmentor resources, and poor communication between services and settings were areas of concern. The vision for CCNS was for a flexible, equitable, and accessible service that supported children’s and families’ needs and choices and which enabled parents to be parents first rather than caregivers. Discussion: Care at home reduces the disruption to children’s and families’ lives and can empower them to make decisions and control routines and practices. Having CCNS situated within larger teams with strong interdisciplinary and transdisciplinary practices seems to offer the best benefits for children and families. Findings from this study have directly influenced government policy and practice. Further research is needed to determine efficacy of particular models and practices