Table 2 Data Extraction Chart

Davies, B., Steele, R., Collins, J.B., Cook, K. & Smith, S. (2004)—Vancouver, British Columbia, Canada [18]

To evaluate the impact of a respite program at Canuck Place Hospice in its first 30 months of operation

PAR, mixed-methods, phased study. Face-to-face interviews with 18 families lead to the development of a mail- out survey sent to 144 families. 65 parents completed all or part of the Respite Care Questionnaire for parents

Population: parent’s perspectives

Describes meaning that respite care in Canuck Place gave to the families’ experiences with a dying child, including practical relief, opportunities for dying child to talk about death, getting support from families in similar situations

Respite at Canuck Place provided families with needed relief from the emotional and physical burdens of caregiving, a sense of belonging, activities which promote a focus on living rather than dying, opportunities for children, siblings, and parents to have safe conversations about death and dying with skilled staff who serve as patient advocates and mediators to the family. Exposure to death at Canuck Place was difficult for families, but prepared them for what was to come and even provided examples of death that can be positive and not traumatic for the children

Limited access to and development of respite care for families experiencing a pediatric death; survey focused on program evaluation rather than how program specifically impacted meaning of death and dying

Davies, B., Collins, J. B., Steele, R., Cook, K. et al. (2005)—British Columbia, Canada [19]

To investigate the experiences of dying children and their siblings at the Canuck Place, pediatric hospice in Vancouver

Mail-out questionnaires completed and included by 25 ill children and 41 siblings. Face-to-face interviews with 4 ill children and 10 siblings

Population: children (ill children and their siblings)

Describes satisfaction and meaning of hospice interventions and experiences for both dying children and their siblings

Nearly all children and siblings reported having a positive experience with the program's activities and environment. Specific valued experiences included the feeling of being understood and the presence of caring staff, a sense of identity/belonging in the shared experience with other ill children/families, fostered independence for sick children and respite for family members, and a special environment which allowed children to concentrate on living, not dying. Suggestions for improvement mainly focused on expanding activities and services for adolescents

Limitations of surveying children included the exclusion of children whose disabilities made them unable to participate in verbal interviews or written surveys and children

Nicholas,D. B., Barrera M., Granek L., D'Agostino N. M., Shaheed J., Beaune L., Bouffet E., & Antle B. (2017) – Canada [20]

To explore the concept of spirituality/hope in parents of children with cancer facing a poor prognosis in a pediatric hospital in a large multicultural city

Longitudinal grounded theory; semi-structured interviews addressing meaning of hope/change of hope over time of 35 parents (26 mothers, 9 fathers) within 3 months of child’s diagnosis; 30 parents at 6 months of diagnosis, and 27 parents at 9 months of diagnosis

Population: parents

Themes of how parental spirituality in the context of having children with a poor prognosis of cancer and the transcendent meaning that spirituality brought to their experiences: spirituality and hope; roles of spirituality; illness-related changes in spirituality and support from a faith community

For some parents, personal spirituality gave a context of meaning to their family's experience of suffering, leading to a sense of comfort, solace, and grounding. Parents found belief in a higher power to relieve their own sense of helplessness/lack of control. Some parents reported spirituality giving meaning and comfort to both child and parent when facing the prospect of dying and reoriented their feelings of fear and grief. Parents reported spirituality mainly remained stable during the course of the study, although sometimes it changed in response to circumstances

Sample included families from only one Canadian pediatric oncology unit and represented parents with predominately Christian spirituality. Study did not address children's concept of spirituality in relation to making meaning of the end of life

Russel C.E., Widger K., Beaune L., Neville A., Cadell S., Steele R., Rapoport A., Rugg M. & Barrera M. (2018) -Canada [21]

To explore the impact of a dying sibling on healthy children, focusing on their involvement in the dying child's life and the impact of their involvement on their grief, coping, and life outside of family

Prospective, longitudinal, qualitative study utilizing interpretive descriptive methodology employing semi-structured interviews of 10 siblings of dying children over 2 years

Population: siblings

Captures perspectives of how healthy siblings make meaning of the dying process of their sibling- some found the experience strengthening for their family while others found it isolating; coping strategies included quality time with the ill child, taking on a caregiving role, spirituality and music. This article revealed that communication about death between the family/parents and siblings was often lacking and siblings struggled to express how they could be supported in their grief, concluding that siblings need increased support from parents and healthcare professionals in how they make meaning of their sibling’s death

Findings of this study include the unique roles, communication experiences, and needs of siblings of dying children

Sample population derived from a single tertiary facility, small sample size

Flavelle S. (2011)—Halifax, Nova Scotia, Canada [22]

Thematic summary of an adolescent's journal capturing his experience with cancer 3 months prior to his death

Case study utilizing phenomenological analysis of a dying youth’s journal

Population: children

Explores the lived experience of a 15-year-old facing death from cancer in the pediatric palliative care context. Themes of his journal entries include how he used humor to make meaning of death and dying; viewing dying from an adolescent developmental perspective; considering the impact of his dying on his family relationships, and his journey with spirituality and hope to bring meaning to and during his illness

Listening to the voiced experience of a dying adolescent facing death can help researchers and clinicians understand how an adolescent made meaning of the dying process. Study sheds light on how this life experience may be meaningful to similar persons and further appreciate what it is like to be an adolescent dying from cancer

Single case study report; further research into how other adolescents view their own end of life experience needed

deJong, M. & Kane L. (2006)—Edmonton, Alberta, Canada [23]

To evaluate parental satisfaction with a bereavement program at the Stollery Children's Hospital

Mailed-out, mixed-methods (open and scaled questions) questionnaires completed by 21 of 81 eligible, bereaved families. Questionnaire was adapted from "Whispers of Hope" bereavement program evaluation survey from Duke University. The questionnaire was revised and adapted to local context with expert validation post interviews with Stollery staff and a parent

Population: parents of families of bereaved children

The meaning families made of the dying and death of their ill child were captured by themes in the open-ended questions/additional comments: extending care; knowing someone cared and learning from grief

Bereavement programs are critical to families experiencing a pediatric death. Staff involved in Pediatric Palliative Care can become an intimate part of the families experience and grief, and maintaining contact with families after the death of the child can reduce feelings of abandonment/isolation and help families feel supported

Low response rate to survey (25.6%). Many bereaved families did not live in the city where their child died in hospital and could not participate in all aspects of the bereavement follow up program (i.e. memorial service)

Steele R. (2005) – Canada [24]

To explore the experience of parents with children dying from a neurodegenerative, life-threatening illness (NLTIs)

Grounded theory study with interviews/observations of 8 families (29 family members, 10 sick children- two families had two sick children with NLTIs)

Population: family members (parents)

Describes strategies families used to make meaning of their child's terminal illness and the dying process

Strategies to find meaning in child's illness and dying included taking each day as it came, finding the positives/opportunities for growth in their situation, wrestling with existential questions of spirituality and sickness (some parents found peace in God to manage their situation, others lost faith or became bitter towards God), and participating in research with the hope of helping other families and children in the future

Small sample size, potentially lacking in cultural diversity

Peterson C. L. (2013). Includes Canada [25]

To report a concept analysis of spiritual care for children at the end of life

Literature search of databases CINAHL, ATLA and PubMed, inclusion of studies published up to the end of 2012, English, peer-reviewed articles yielded result of 51 included studies. Each article was reviewed for attributes of spiritual care, which were categorized into: attributes; antecedents; consequences; surrogate terms, and related concepts for analysis completed by Rodger’s evolutionary method

Population: children

Discusses how attributes of spiritual care in the pediatric palliative population can assist the child to find meaning during the dying process

Assisting a dying child with cancer to express their feelings, beliefs, and hopes surrounding their death, exploring legacy-making activities, and the use of life stories, faith practices, and altruistic acts (such as cancer research fund-raising) can help some children find spiritual meaning amidst their tragedy

This analysis did not account for pediatric developmental differences in spiritual care needs and did not examine spiritual care interventions related to specific cultural or religious beliefs

Zelcer S., Cataudella D., Cairney A. E.L., Bannister, S. L. (2010) – London, Ontario, Canada [26]

To explore the end of life experience of children with brain tumors and their families

Qualitative study utilizing thematic analysis on data collected through semi-structured focus group interviews of 25 parents of 17 deceased children between 3–12 years post death

Population: parents

Maintaining normality, finding hope and strength from their child's resiliency, and conversations about death and dying in the family point to how families found meaning in the dying child process

Themes from family interviews include: the dying trajectory; parental struggles and dying at home. Thematic fundings discuss the desire to maintain normalcy as much as possible and focus on living rather than dying (such as encouraging child continuation in schooling, celebrating accomplishments, and peer friendships and support). Parents reported finding strength by maintaining hope and through the resiliency of their suffering child. Parents also suggested that their child was aware of their own impending death and lead their parents through the dying process and saying goodbye, indicating that children wish to discuss death with their loved ones

Small sample size; interviews with families occurred 3–12 years post child death which may not accurately reflect the actual dying process owing to the lapse of time

Muskat B., Greenblatt A., Anthony S., Beaune L., Hubley P., Newman C., Brownstone D., & Rapoport A. (2020)—Ontario, Canada [27]

To explore the experiences and coping strategies of physicians, nurses, and social workers working with dying children

Qualitative study utilizing an interpretive descriptive approach; face-to-face individual, semi-structured interviews with 25 healthcare professionals (physicians n = 8, nurses n = 8, social workers n = 9) who regularly cared for dying children in an acute-care setting

Population: carers

Discusses both the difficulties and the meaningful aspects of providing end of life care to pediatric patients including giving healthcare providers a sense of reward; meaning in providing the best care possible to children and developing greater personal appreciation and understanding of what makes life meaningful

Participants reflected on how they make meaning of the death of pediatric patients in terms of the privilege of being with their patients at the end of life. Meaning was captured in their facilitating high quality palliative care, and even exploring their own personal perspectives of the meaning of life. Healthcare providers also shared that their own personal beliefs on death and achieving a sense of peace and acceptance in regards to the dying process resulted in their greater ability to cope

Sample does not represent the perspectives of new staff experiences, nor does the study examine the difference between specialties

Champagne, E. (2008)—Quebec, Canada [28]

To describe children's expressions of living and dying in the context of an interactive Christian programme in Quebec and provide a theological/social interpretation of their expressions / experiences of death

Discussion article on the author's use of natural observation and interpretations of three groups of child participants who voiced understandings of death in a voluntary, theological exercises program in Quebec

Population: children

Children's participation in this religious formation program gave space for their expression of what death and dying means to them. Children expressed ideas of suffering and loss, the universality of death, questions of where people go when they die, and a practice of speaking with the deceased "in their hearts"

Children actively and spontaneously engage in discussions on death and dying, and listening to their own insights and experiences can help adults appreciate children’s voices and spiritual understandings of death. Children’s understanding of death and dying will vary based on their psychosocial development and experiences, but the utilization of stories and symbols may aid children in voicing their inner understandings to the outside world. Socio-political contexts can restrict children’s faith expression and search for transcendent meaning about death. Religious freedom should be encouraged in Canada to inform children and parents/ families worldviews

The observations made in this article were from a small sample size at one religious formation program in Quebec. Further research to children's voices and worldviews on death and dying are needing with larger populations and in more diverse, cultural contexts

Gagnon, M., Kunyk, D. (2021). Canada (data from 6 PICUs across Canada) [29]

To analyze nurses’ experiences of moral distress working with children who die in Canadian PICUs

Secondary, qualitative content analysis conducted on data from primary interviews with nurses in a parent study exploring the moral distress in Canadian PICUs. Transcripts were selected from parent study that focused on nurses’ perspectives. Inductive analysis generated new lines of inquiry to respond to secondary research questions on how nurses in parent study made meaning of moral distress related to their experiences of working with dying children who died in PICU contexts

Population: carers (nurses)

A child’s dying from the perspective of nurses should be dignified; dignity was captured as negatively meaningful: a child’s death in the PICU ought not be a salvage experience; children’s dying in PICU settings was often drawn out, painful and worthy of better ethical decision making regarding moving from disproportionate to proportionate care. Lack of ethical knowledge inhibits, stalls or stagnates the ethical care of dying children which inhibits healthcare professionals’ responsibilities to the dying child. Focusing on extrinsic elements i.e. technology distracts from the personal; nurses need to move beyond internal constraints to do what they ought to do for the dying child patient as opposed to focusing on what they can’t do owing to external constraints

Three themes developed from the content analysis: 1) a dignified death and balancing best interests; 2) burden of insider knowledge, and 3) constraints to nursing roles and responsibilities. Dying and death for children need to be dignified which is not conditional or controlled; it is about capturing the humanity and personhood of the child who is dying and ensuring that extraneous factors such as technology, lack of ethics knowledge and power imbalances in healthcare professional relationships do not overshadow the experience of a child’s death. Palliative care needs to be moved into the PICU context so that children can die well. Dying needs to be normalized in a responsible way; extraordinary/ disproportionate treatment should not take away from the ordinary yet extraordinary care and meaning of each child’s life, albeit a short life

Data from parent study were obtained a decade ago; however, findings still relevant in light of advancing technologies to prolong life for children in and out of critical and intensive care settings. Some of these advances are not proportionate to the context of pediatric dying and death. Medical advances in treatment not being met with simultaneous growth in specialized pediatric palliative care at the end-of-life in Canada. It is not clear how effective change can occur. Moral distress is yet to be resolved and interprofessional communication has not shown marked improvement to improve nurses’ experiences of working with dying children