Cultural and religious considerations in pediatric palliative care

Abstract

Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

Community Palliative Care Nurses’ Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care

“…[12][13][14] Culture and religion can have an influence on palliative care for children. 15 Pediatric palliative care is a young emerging subspecialty in Malaysia. There are minimal services for children with lifelimiting illness in the community, and there is currently no formally trained pediatric palliative care nurse in Malaysia.…”

Subcultural Narratives of Pediatric Chronic Illness in the Arab Community

“…Considering the best interest of the family unit including the child, and a cultural reframing of disclosure is imperative. Wiener et al (2013) suggest that presenting end of life matters in "hypothetical terms" may relieve parental and familial anxiety and concerns as opposed to directive communication. Other families may initially reject the diagnosis, treatment, and/or prognosis, in order to avoid acceptance especially in the case of poor prognoses.…”

“…At this intersection, it is important to validate familial beliefs and perceptions, while underlining that their discussion of such matters can include a gamut of possibilities that do not contradict their faith-based values. Wiener et al (2013) further postulated that completing a "spiritual assessment" with the child and the family can become a primary component of pediatric care. This can include questions pertaining to coping mechanisms such as prayer as well as perceptions of life and death.…”

“…Medical practitioners are also increasingly recognizing the importance of the proximal overlap of culture and spirituality within the context of delivering effective pediatric care (Mcevoy, 2003). Cultural factors can be perceived as strengths, albeit, these can be also classified as barriers to effective treatment (Wiener et al, 2013). This is especially pertinent if practitioners do not have the sufficient awareness of the cultural background of patients and their families.…”

Effectiveness of nursing in paediatrics unit: Reviewing culturally sensitive care and experiences of nurses on the patients’ health recovery.

“…Our culture and religious beliefs shape every experience of our life and our beliefs about illness,pain and of life. Thus culture plays a big role for the nurses who are engaged in providing paediatric palliative care (Wiener, McConnell, Latella & Ludi, 2012). Every individual, belonging to whichever culture has the right to healthcare service that is culturally sensitive and appropriate.…”