Memory-making interventions for children and their families receiving pediatric palliative or bereavement care: A systematic review protocol

Introduction

The integration of paediatric palliative and bereavement care within the global health landscape is essential for providing comprehensive care to children facing life-limiting and life-threatening (LLLT) conditions, as well as their families. Despite the challenge of accurately estimating prevalence rates of children with LLLT conditions, the demand for palliative care services is significantly underestimated and is expected to rise (Department of Health and Children (DoHC), 2009; Fraser et al., 2021). Palliative care aimed at improving the quality of life for patients with serious illnesses and their families (Hallenbeck & Hallenbeck, 2022). Children with life-limiting conditions have no reasonable hope of cure and are expected to die prematurely, while life-threatening conditions involve a high probability of premature death but may have feasible curative treatments (Roland et al., 2022). Paediatric palliative and bereavement care services are crucial in circumstances where cure may not be an option, requiring care that extends beyond traditional medical treatments to address holistic care for children's physical, psychological, and spiritual needs, along with supporting families from diagnosis through end-of-life care or ongoing treatment (Mitchell et al., 2020; Together for Short Lives, 2018; World Health Organization, 2020). This aligns with the Sustainable Development Goal 3, which emphasises universal health and well-being, including palliative care as an essential service for achieving global health objectives (United Nations, 2023).

Current estimates suggest around 21 million children globally require palliative care annually, with approximately 8 million needing specialist care (Connor et al., 2017). In England, the prevalence of children with life-limiting conditions rose from 26.7 per 10,000 in 2001/02 to 66.4 per 10,000 in 2017/18, with the highest rates in the under 1-year age group (Fraser et al., 2021). Similarly, in Queensland, Australia, the prevalence increased from 35.2 per 10,000 in 2011 to 43.2 in 2016, especially among children under one year and Aboriginal and Torres Strait Islander children (Bowers et al., 2020). This growing demand highlights the importance of comprehensive palliative and bereavement care with the prevalence of children requiring these services expected to rise due to advancements in medical care and increasing recognition of paediatric palliative needs (Roland et al., 2022).

Globally, the provision of bereavement support tailored to the needs of families of children receiving palliative care is recognised as a critical component of comprehensive care (Applebaum et al., 2023; Hudson et al., 2018; Thornton et al., 2021). This support, crucial for navigating the emotional, psychological, and practical challenges following the loss of a child, emphasises family-centred psychosocial interventions to enhance life quality and well-being (Akard et al., 2018; Benini et al., 2022; Pedraza et al., 2024). Family distress is a concern in paediatric palliative and bereavement care, where emotional burden can be overwhelming for parents (Bronsema et al., 2022; Hasdenteufel & Quintard, 2022). Minimising parents' regret is also essential for healthy bereavement, as unresolved regret can complicate the grieving process. Parents who had minimal involvement in their infant's bedside care expressed feelings of regret and guilt after their loss (Sim et al., 2020). Clarke & Connolly (2022) found that parents appreciated memory-making activities, such as creating personalised memory boxes, hand and footprint jewellery, and moulds, which help document their child's life and maintain a connection after their death, significantly aiding the grieving process. The National Policy on Palliative Care for Children with Life-Limiting Conditions in Ireland (DoHC, 2009) and studies such as Clarke & Connolly (2022) highlight the significance of interventions like memory-making interventions, which allow families to create lasting memories and maintain a continuing bond with their child.

This review focuses on children and young people aged 0–19 years with LLLT conditions, recognizing that care and support needs vary significantly across different age ranges, developmental stages, and conditions. Younger children may require more family involvement in interventions, such as creating scrapbooks and memory boxes, while adolescents and young adults might engage more independently in activities like hobbies and school. Understanding these differences ensures that interventions are tailored to support infants, children, young people and their families effectively (Coombes et al., 2022).

Memory-making interventions are increasingly recognised within paediatric palliative and bereavement care contexts to help children and families make meaning out of their experiences (Akard et al., 2021a; Akard et al., 2021b; Sisk et al., 2012). Memory-making, also often referred to as creating a legacy (Akard et al., 2021c), is a broad term describing specific processes, such as sense-making and benefit finding, that contribute to adapting to stressful life experiences and is a core element in coming to terms with grief (Kobler et al., 2007; Park, 2013). Memory-making interventions can include tangible activities such as memory boxes, handprint art, or digital storytelling and recording special messages. These interventions serve not only as therapeutic tools to support emotional expression and processing but also as valuable artifacts that families can hold onto, serving as a source of comfort and connection to their loved one (Boles & Jones, 2021).

Four recent review papers have shed light on the diverse approaches to memory-making in healthcare (Boles & Jones, 2021; Keller et al., 2024; MacEachen et al., 2023; Xu et al., 2024). Although these reviews cover a broad spectrum, none specifically focused on memory-making interventions for children with LLLT conditions and their families within the realms of palliative or bereavement care. Boles and Jones (2021) highlighted the significant benefits of legacy interventions, for both adult and paediatric populations, showing significant improvements in well-being and a reduction in depression symptoms among adults. This review demonstrates the utility and benefits of legacy interventions but highlights the scarcity of paediatric focused research and the need for standardized practices in legacy interventions. Keller et al. (2024) took a deep dive into what "legacy" means in the context of paediatric healthcare. They identified that legacy creation in children's healthcare is a collaborative process that leaves something lasting to remember the child by, capturing the unique essence or spirit of the child. They identified that legacy-oriented interventions are provided in most children's hospitals in the United States yet highlighted the absence of a widespread consensus on the foundation or scope of these interventions. This gap emphasises the critical need for evidence-based guidelines and practices in creating and implementing legacy for and with children, suggesting an opportunity to enhance the quality of care for children and their families globally.

In a qualitative thematic synthesis, MacEachen et al. (2023) explored families' experiences of memory-making in both adult and paediatric critical care settings, aiming to understand the impact on bereaved families. The synthesis identified four main themes describing families' experiences: connection, compassion, engagement and creation, and continuation. MacEachen’s review illuminates how memory-making facilitates a connection between families and healthcare staff, providing a structure and purpose during the bereavement process, and fostering a continuing bond with the deceased. The review also highlights the lack of research focusing on paediatric critical care settings, marking a vital area for future exploration. Finally, Xu et al. (2024) conducted a qualitative synthesis examining bereaved parents' perceptions of memory-making. Their findings reveal parents' recognition of memory-making's significance in connecting with their children and navigating grief. Yet, they identified barriers such as a lack of understanding and preparation, along with limited support, which sometimes led parents to miss out on these meaningful opportunities. The review calls for a deeper investigation into how memory-making practices and intervention can be better tailored to meet the diverse needs of families, particularly considering cultural sensitivity and the evolving nature of grief over time. While these previous reviews have revealed important information about memory-making and memory-making interventions in various contexts and with different populations, they also highlight significant gaps in our understanding, particularly concerning paediatric populations, and the need to consider challenges faced by bereaved parents. To date, to our knowledge, no systematic review has been undertaken to specifically examine memory-making interventions for children with LLLT conditions and their family receiving palliative and/or bereavement care.

Therefore, the aim of this review is to identify, appraise, and synthesise the current evidence on memory-making interventions for children with LLLT conditions and their family members who are receiving palliative or bereavement care. Our objectives include synthesizing evidence on the (1) range of memory-making interventions used for children with LLLT conditions and their families receiving palliative or bereavement care, (2) effectiveness of memory-making interventions by synthesizing outcomes reported in the literature and mapping the measures used to assess psychosocial outcomes like resilience, emotional coping, family communication, and any other relevant outcomes, (3) experiences of families who participate in memory-making interventions, focusing on their perceptions, the perceived impact on their emotional and psychosocial well-being, and the contribution to family cohesion, and (4) barriers and enablers affecting the successful implementation of memory-making interventions.

Protocol

Information sources and search strategy

To ensure a comprehensive literature review, we will conduct searches across multiple databases for peer-reviewed publications from January 1, 1985, to February 27, 2024. These databases include PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, Cochrane Library, and Scopus. Additionally, we will examine the reference lists of related reviews to identify further studies that meet the review eligibility criteria.

The search strategy of this review has been systematically developed according to the PICO framework, focusing on the Population (P) and Intervention (I) components. This involved the utilization of the MeSH database in PubMed and Emtree via Embase and was informed by previous systematic reviews. A sample search strategy developed with a librarian is presented in Table 1.

Conclusion

This systematic review will culminate in a comprehensive synthesis of evidence on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of future healthcare for children and young people with life-limiting and life-threatening conditions and their families, as well as those in bereavement.