Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

Abstract

Background: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. Methods: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child’s life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Conclusion: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

“…However, they are all services that parents participated in the previous focus groups identified as lacking. 13 Consistent with the focus groups' perspective, parents who returned the mailed survey reported that they thought that services would be helpful at a much higher rate than they reported utilizing those services. For example, 16 parents reported that a cancer support group for parents would be "very helpful" or "somewhat helpful" and 15 parents reported that mental health resources for parents would be "very helpful" or somewhat helpful".…”

“…The survey was developed by the study team based on results from focus group discussions. 13 The study team included pediatric oncology physicians, a pediatric bone marrow transplant nurse practitioner, a pediatric palliative care physician, a pediatric psychologist with experience in palliative care, and a medical student. The focus groups discussed what went well, what did not go well, and suggested improvements for end-of-life care.…”

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

“…Exacerbation of parental grief [ 10 , 146 ] was also noted when the child experienced poor symptom management [ 10 , 108 , 143 , 146 , 151 , 152 ], prolonged illness [ 120 ], and a hospital death [ 162 ], particularly when the parent was separated from the child [ 131 , 148 ], insufficiently prepared for the loss [ 92 , 100 , 113 , 116 , 131 , 150 , 163 ], and faced a lack of conducive environment to say goodbye [ 148 , 164 ]. Psychosocial morbidities were exacerbated by poor transition of care [ 114 , 127 , 129 , 140 , 143 , 148 ], poor communication [ 10 , 82 , 116 , 117 , 129 , 131 , 132 , 135 , 143 , 148 , 165 – 167 ], unrealistic prognostication [ 10 , 113 , 129 , 132 , 135 , 138 , 165 , 166 ], role conflict between parents and healthcare providers during end of life decision making [ 167 – 169 ] and the healthcare providers’ lack of cultural sensitivity [ 170 ]. Anger, fear and guilt [ 96 , 106 , 117 , 118 , ...…”

“…Psychosocial morbidities were exacerbated by poor transition of care [ 114 , 127 , 129 , 140 , 143 , 148 ], poor communication [ 10 , 82 , 116 , 117 , 129 , 131 , 132 , 135 , 143 , 148 , 165 – 167 ], unrealistic prognostication [ 10 , 113 , 129 , 132 , 135 , 138 , 165 , 166 ], role conflict between parents and healthcare providers during end of life decision making [ 167 – 169 ] and the healthcare providers’ lack of cultural sensitivity [ 170 ]. Anger, fear and guilt [ 96 , 106 , 117 , 118 , 134 , 163 , 171 ], anxiety, depression, post-traumatic stress symptoms [ 89 , 158 , 163 , 168 , 172 , 173 ], insomnia [ 89 ], permanently damaged parental self-concept [ 168 ], role confusion [ 171 ], poor social function [ 10 , 89 , 99 ], functional impairment such as phobias or somatic problems [ 81 , 92 , 155 , 163 , 174 ], suicidal ideation and prolonged grief [ 10 , 89 ] were also exacerbated by inadequate soc...…”

“…On the other hand, being aware of the child's prognosis helped prepare some parents [110,112]. Direct, timely, and personalised communications [113], effective end of life care [111,[114][115][116][117][118][119][120][121][122][123][124], respect for advance care planning (ACP) [111] and parental involvement in care determinations also assuaged parental grief [84,125,126].…”