Table 1 Summary of included studies
From: Bereaved parents’ perceptions of memory making: a qualitative meta-synthesis
Author (first), year | Country | Aim | Setting | Participants | Children’s diseases and developmental stages | Methods | Findings (Themes) |
|---|---|---|---|---|---|---|---|
Clarke [27] (2022) | Ireland | To explore the lived experience a memory making process have on parents of children who are at or near end-of-life. | In a hospice | 6 mothers | Infants and children | semi-structured interviews/Interpretative phenomenological analysis | 1. Making the memories. 2. The impact of memory making. 3. The end-of-life care journey. |
Love [30] (2022) | USA | To characterize bereaved parents’ perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists. | Phone interview | 17 mothers, 2 fathers | Children dying of cancer | semi-structured interviews/content analysis | 1. The value of legacy items and interventions. 2. The practical roles, uses, and functions of legacy items. 3. Best practices for offering legacy interventions. |
Goldberg [28] (2022) | USA | To understand the legacy experiences and perceptions of parents who have experienced perinatal or early infant (less than 3 months of age) loss. | Individual in-person, phone interview, and Zoom videoconferencing | 7 mother, 3 fathers | Perinatal and early infant (less than 3 months of age) | unstructured interview/ Phenomenological qualitative traditions | 1. Legacies are composed of memories and experiences that have a lasting effect on others. 2. Healthcare experiences both generate and participate in infants’ legacies. 3. Parents’ legacy perceptions are shaped by cultural conceptions, spiritual beliefs, and grief experiences. |
Thornton [22] (2021) | Australia | To explore the significance of memory-making for bereaved parents and the impact of memory-making on parents’ experience of neonatal end-of-life care. | Telephone, Skype and face-to-face interviews | 13 mothers, 5 fathers | Infants | Ground theory | 1. Creating Evidence 2. Needing Guidance 3. Being a parent |
Schaefer [19] (2020) | USA | To explore the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer | Individual in-person and phone interview | 6 mothers, 6 fathers | Children dying of cancer | semi-structured interviews/content analysis | 1. Legacy artwork allows for family bonding and opens communication regarding the child’s impending death. 2. Provides opportunities for parents to engage in life review and meaning-making, is often displayed in the parents’ home after the child’s death. 3. Parents take comfort in using these projects to continue their bond with their deceased child. 4. Can ameliorate parents’ grief after their child’s death. 5. May reduce healthcare providers’ compassion fatigue and provide them an outlet for coping with their patients’ deaths. |
Ramirez [26] (2019) | USA | To understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant. | Phone interview | 4 mothers, 2 fathers | Stillbirths and infants | Grounded theory | 1. Validation of the experience 2. Permission to share. 3. Creation of a permanent and tangible legacy. 4. Creation of positive memories. 5. Moving forward after the loss. |
Akard [31] (2018) | USA | To explore bereaved parents’ perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant. | In a private living room style conference room. | 3 mothers, 3 fathers | Infants | Focus group/content analysis | 1. Parents’ willingness to participate in a legacy intervention. 2. Parents’ suggestions for a feasible intervention. 3. Parents’ suggestions for an acceptable intervention. 4. Parents’ perceived benefits of legacy-making. |
Blood [32] (2014) | USA | To explore the patents experience to ostmortem memento photography. | online survey | 101 mothers, 1 fathers | Perinatal death | content analysis | 1. Obstacles to postmortem photography. 2. Supporting parents’ needs. 3. Creating quality mementos. 4. Creating quality mementos. 5. Parents who were not asked if they wanted photos. 6. Parents who do not have pictures. 7. Broad appreciation expressed by parents. |
Martel [29] (2014) | Canada | To explore parents experience End-of-Life (EOL) photography around the death of their newborn in the neonatal intensive care unit (NICU) and in their lives beyond the hospital | At the hospital | 6 mothers, 4 fathers | Newborn | semi-structured interviews/Phenomenological Study | Parenting and knowing |