The Experience of Decision Making in the Care of Children with Palliative Care Needs: The Experiences of Jordanian Mothers

Abstract

The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children. Mothers had a widespread apprehension of "future guilt," especially when they feared that any decisions they might make could have an adverse impact on their children. Contrary to the predominant pattern, some mothers took a proactive approach towards decision making about their children's treatment. These mothers requested detailed information from primary physicians and sought different sources of knowledge such as second opinions, reading online resources, or talking to other parents who had a child with similar circumstances. The study concludes that mothers prefer to involve physicians in decisions about their children's healthcare and treatment to eliminate their fear of probable future guilt; this modifies any tendency to autonomously decide for their children. These findings are underpinned by the Jordanian culture in which doctors' opinions are highly regarded.

Mothers Caring for a Child at End of Life: A Systematic Review

“…When a child is diagnosed with a terminal illness, the mother's life is negatively affected (de Andrade et al, 2017). Mothers can experience mental, psychological, and physical changes due to the pending loss of her child (Arruda-Colli et al, 2016;Atout et al, 2017;Lou et al, 2015). According to Mangeli et al (2018), mothers report that when their child is at EOL, they feel like their bond between themselves and their child is starting to break.…”

“…Studies have shown that it is difficult for parents to be present with their child at EOL (Arruda-Colli et al, 2016;Atout et al, 2017;De Vos et al, 2015;Lou et al, 2015;Ohs et al, 2015). For example.…”

“…Grief was a common emotion expressed by parents with a child receiving EOLC (Arruda-Colli et al, 2016;Atout et al, 2017;De Vos et al, 2015;Lou et al, 2015;Ohs et al, 2015). Parents reported feeling grief before the death of their child (Arruda-Colli et al, 2016).…”

“…Throughout the world, researchers have explored parents, and particularly mothers', experiences with their children who are at end of life (EOL) (Arutyunyan et al, 2018;Arruda-Colli et al, 2016;Atout et al, 2017;Baughcum et al, 2017;De Vos et al, 2015;Haley & Walker, 2016). Mother with children at EOL experience mental, psychological, physical, social, financial, and spiritual alterations during that period (Arruda-Colli et al, 2016;Atout et al, 2017;Lou et al, 2015). However, limited information was found focused on the experiences of mothers caring for their child at EOL and end of life care (EOLC).…”

After an end‐of‐life decision: Parents' reflections on living with an end‐of‐life decision for their child

“…However, negative outcomes such as guilt have been also identified 3,8,12,13 . Indeed, anticipated future guilt about possible adverse outcomes for their child has been identified by some parents as a reason for not engaging in decisionmaking 13, 14 .…”