The practice of mutual protection in the care of children with palliative care needs: A multiple qualitative case study approach from Jordan
Child; Communication; Jordan; Life- limiting; Mutual protection; Palliative care; Qualitative
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. RESULTS: Qualitative case studies were developed around 15 children (aged 1-12years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of 'mutual protection' dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died. CONCLUSION: The findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.
Atout M; Hemingway P; Seymour J
Journal of Pediatric Nursing
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2018.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.12.004</a>
Experience of nurses who work with children with palliative care needs: A mixed-method systematic review
Education; Experience; Nurses; Palliative care; Pediatric
OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs. METHODS: The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000-2015. RESULTS: Finding revealed that working with children with palliative care needs is an emotionally struggling job for nurses, especially when they try to manage the transition of pediatric patients from curative to palliative care. Staffing level and time constraints comprise a major obstacle in pediatric palliative care. Focusing on invasive treatment and technology in spite of the feelings that it will not improve patients' health status intensifies the feeling of guilt and helplessness for nurses. Finally, nurses asserted the importance of receiving pediatric palliative care education, especially how to communicate with children with palliative care needs and their families. SIGNIFICANCE OF RESULTS: Further research is recommended with regard to nurses' experience in communication with children with palliative care needs. Nursing education in pediatric palliative care is significantly important, especially how to communicate with children with palliative care needs and their families.
Atout M
Palliative and Supportive Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951519000956" target="_blank" rel="noreferrer noopener">10.1017/s1478951519000956</a>