Palliative care and the spiritual needs of children and their families

A study of 55 nurses in palliative care focuses on the spiritual needs of families when confronted with a child’s imminent death

Ferrell B, Wittenberg E, Battista V et al (2016) Exploring the spiritual needs of families with seriously ill children. International Journal of Palliative Nursing. 22, 8, 388-394.

Background

Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with the child’s imminent death.

There is a concern that nurses lack competence in communicating with families about spiritual needs. Nurses working in palliative settings are with children and their families as they approach death, but there is a dearth of literature about spiritual needs at this stage.

Methods

The study had a qualitative design, involving 55 registered and advanced practice nurses in clinical roles in paediatric settings attending a palliative care training course in the United States.

Participants were asked to reflect on their experience of communicating with seriously ill and dying children and their families. Each wrote down their thoughts, summarising events and detailing conversations with the child or family member. The authors used data from an earlier study on communication and forgiveness (Ferrell et al 2014). Data were analysed thematically.

Findings

The spiritual needs identified related to four broad themes: anger, blame/regret, forgiveness and ritual and cultural tradition.

Participants reported parents expressing anger towards God and a desire to talk about the anger. There were reports of families discussing feelings of blame and regret, believing, for example, that they had not sought medical assistance quickly enough. Some families and children felt a need to apologise and/or ask for forgiveness. Often the child expressed sorrow for being a burden or for inflicting grief.

Different cultural rituals and traditions were identified. Families wanted to be listened to and respected, to have their spiritual needs honoured with nursing staff present and non-judgemental.

Conclusion

Nurses need effective communication skills to support the spiritual needs of seriously ill children and their families. Training on when and how to have these conversations with children and their families is required. More research is needed to explore how teams collaborate to provide spiritual care within a family-centred care ethos.

Commentary

 There will be critical times when nurses can listen and respond

The spiritual or existential side of palliative care is recognised as one of the most important and least understood aspects (Baird 2016). It is also regarded as one of the most difficult areas to communicate about (Hexem et al 2011).

The study by Ferrell et al (2016) highlights the spiritual needs that present in families with a seriously ill child. The authors identify critical times and opportunities in palliative care when nurses can listen and respond to the spiritual requirements of children and families.

Part of this involves revisiting goals, assessing and understanding information, exploring the child’s illness trajectory and transitioning to palliative care and coping with the child’s death (Contro et al 2002, Rodriguez and King 2014).

The participants in Ferrell et al’s (2016) study describe the observable and improved child and family mood when spiritual needs are explored and perceived to be met, thus identifying a potentially measurable worth in this communicative practice. More research is needed on the impact of spiritual support on well-being for child and family.

Of the families they discussed, the memories of each participant were vivid, showing the impact the events had had on their own professional practice and spirituality. It would be of interest to explore the spiritual impact of these experiences on practitioners; this type of research could contribute to better support structures for practitioners and help to aid reflexivity.

We can learn a lot from qualitative experiential research, and use it to consider how we might best support families. It seems clear that further studies are needed to explore child and family spiritual needs and experiences across palliative settings. For example, in community (urban and rural) and hospice settings and in-patient hospital care.

Other studies have identified that children and families can be selective about who they want to discuss sensitive issues with (Rodriguez 2014). Being knowledgeable about spiritual issues and needs across settings and having related training is important not only for those with a specialised nursing care or key working role, but for all children’s nurses.

Training should be focused on when and how to have conversations with children and families about spiritual needs. Being open to individual differences, being present and accommodating is pertinent in training and practice (Weiner et al 2013).

References

Baird P (2016) In Spiritual, Religious and Cultural Aspects of Care, edited by Ferrell B. Hospice & Palliative Nurses Association Palliative Nursing Manual, Oxford University Press, New York.

Contro N, Larson J, Scofield S et al (2002) Family perspectives on the quality of pediatric palliative care. Archives of Pediatrics & Adolescent Medicine. 156, 1, 14-19.

Hexem KR, Mollen CJ, Carroll K et al (2011) How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. Journal of Palliative Medicine. 14, 1, 39-44.

Rodriguez A and King N (2014) Sharing the care: the key-working experiences of professionals and the parents of life-limited children. International Journal of Palliative Nursing. 20, 4, 165-171.

Wiener L, McConnell DG, Latella L et al (2013) Cultural and religious considerations in pediatric palliative care. Palliative and Supportive Care. 11, 1, 47-67.

Alison Rodriguez is lecturer in child and family health, University of Leeds on behalf of the RCN’s Research in Child Health community