Introduction
Medical advancements have significantly improved the length of life for children with serious and complex illnesses and, correspondingly, increased this group’s population size over recent decades (Cohen and Patel Reference Cohen and Patel2014). However, many childhood conditions are still life-threatening and significantly shorten the lives of some children (Cohen and Patel Reference Cohen and Patel2014; Rapoport and Liben Reference Rapoport and Liben2015). Approximately one million children die from a life-limiting terminal illness each year (Boucher et al. Reference Boucher, Downing and Shemilt2014; Himelstein et al. Reference Himelstein, Hilden and Morstad Boldt2004). Pediatric palliative care (PPC) has emerged as an end-of-life care model that has advanced the care provided to children with life-limiting illnesses. PPC is specifically focused on improving quality of life (QoL) for these children and their families (Rapoport and Liben Reference Rapoport and Liben2015).
PPC has evolved into an established field of medical expertise and practice (Feudtner et al. Reference Feudtner, Digiuseppe and Neff2003; Widger et al. Reference Widger, Davies and Drouin2007, Reference Widger, Davies and Rapoport2016). PPC clinicians aim to offer care that is collaboratively centered around the unique and evolving needs of infants, children, and young adults (Feudtner et al. Reference Feudtner, Digiuseppe and Neff2003). Further, their provision of PPC is intended to align with the wishes of the child and their family (Muskat et al. Reference Muskat, Greenblatt and Anthony2020; Rapoport and Liben Reference Rapoport and Liben2015; Widger et al. Reference Widger, Davies and Rapoport2016). To carry out their work, PPC practitioners require specific knowledge and expertise pertaining to childhood and developmental stages (Himelstein et al. Reference Himelstein, Hilden and Morstad Boldt2004; Jennings Reference Jennings2005; Schmidt Reference Schmidt2003). In turn, they are trained to consider a child’s physical, psychological, social, emotional, practical, and existential needs (Feudtner et al. Reference Feudtner, Digiuseppe and Neff2003; Himelstein et al. Reference Himelstein, Hilden and Morstad Boldt2004). PPC typically begins as early as a child’s diagnosis and then continues and evolves throughout a disease’s trajectory until the end of life (Delgado-Corcoran et al. Reference Delgado-Corcoran, Wawrzynski and Bennett2020).
Providing care in a patient’s physical place of choice can contribute to the quality of care they experience (Higginson and Thompson Reference Higginson and Thompson2003). The location of PPC plays a critical role in how a PPC team delivers care, as well as how a child and their family experience it. The 3 locations where PPC is most often delivered are the hospital, hospice, and home (Bender et al. Reference Bender, Riester and Borasio2017). A family’s preference for choosing one of these locations may be attributed to a combination of cultural preferences, geographical settings, and resource accessibility (Bender et al. Reference Bender, Riester and Borasio2017). While the importance of location in the planning and provision of palliative care has been explored in relation to adults, it has received remarkably little attention in relation to children (Jones Reference Jones2011). Place is highly contested in the literature, with little consistency shown across academic discourse. By “place,” we are considering the personal and cultural meanings that individuals and groups ascribe to a specific physical location (Cresswell Reference Cresswell and Maldon2004). As people personalize, connect, and associate feelings with and ascribe meaning to specific sites, they are making physical spaces social – i.e., they are making them into places. Place plays a critical role in how individuals come to view, experience, shape, create, value, and feel belonging in communities and institutions. The purpose of this scoping review is to explore how place and its importance are understood and approached in the PPC literature. We do this with a view to advancing a fuller understanding of PPC–place relations so that we can work toward leveraging place and its meanings to help improve the quality of PPC. To do this, we engage the following review question: “What is known about the importance of place in PPC?”
Methods
Our scoping review drew upon Arksey and O’Malley’s (Reference Arksey and O’Malley2005) scoping review framework to gather and identify the literature pertaining to the importance of place as it relates to PPC. Using scoping review principles, a comprehensive list of search terms was generated and compiled into a search string, 5 key databases were identified and searched, and inclusion and exclusion criteria were identified and then applied to search results. The search strategy was developed with support from a health sciences research librarian working within a pediatric rehabilitation academic health sciences center.
Literature search process
With input from the health sciences research librarian, we selected 5 databases to search based on their relevance to health sciences: (1) Medline via Ovid, (2) APA PsycInfo via Ovid, (3) Embase via Ovid, (4) CINAHL Plus via EBSCO, and (5) Scopus. We crafted a search function comprising terms related to “pediatric,” “palliative,” and “place” to capture the peer-reviewed literature pertaining to our topic. As shown below, this search function comprised 6 pediatric terms, 8 palliative care terms, and 6 place/location terms:
((child* OR youth* OR teen* OR adolescen* OR p#ediatric* OR “baby”) AND (end-of-life* OR life-limit* OR palliat* OR “dying” OR terminal* OR “mortality” OR “spphc” OR “pphc”) AND (place* OR location* OR setting* OR hospice* OR hospital* OR home*))
This search function includes Boolean operators (AND, OR) to carefully combine key and alternate search terms. It also includes truncated terms (i.e., the use of asterisks) to capture terms in their singular and plural forms, and with different suffixes (e.g., “adolescen*” will capture “adolescent,” “adolescents,” and “adolescence”). In June 2021, 2 research team members applied the search over a 47-year period (1974–2021) across the 5 identified databases. The year 1974 was selected as the starting date of our search period because it marks the emergence and development of palliative care in Canada (Loscalzo Reference Loscalzo2008). Two researchers downloaded the search result records from each database and loaded them into a Covidence database. Covidence is software specifically designed to support the management of systematic/scoping review records and to facilitate different stages of review screening (i.e., first screening of titles and abstracts, resolving first screening conflicts, second screening of articles in full, resolving second screening conflicts). Inclusion and exclusion criteria were then applied to each article to help ensure that our search led to the comprehensive collection of a full range of literature concerning the importance of place in PPC.
Inclusion and exclusion criteria
Documents were considered as part of this review if they met the following inclusion criteria:
1. Published between 1974 and 2021;
2. Available in English;
3. Full text was accessible online;
4. Focused on children under 18 years old receiving palliative care;
5. Considered the experience, importance, and/or significance of place in PPC in some capacity;
6. Peer-reviewed empirical study (not a literature review) or relevant legislation; and
7. Study was geographically located in the Global North.
The decision to restrict review materials to those considering children under 18 years was made to align with the transition of pediatric health care to adult care, which typically occurs at 18 years of age. To help us understand what the literature tells us about the meaning and importance of place in PPC, the included documents were required to focus on experience, importance, and/or significance of place.
Documents were excluded from the review if they met the following exclusion criteria:
a. Dissertation;
b. Conference proceeding;
c. Position statement or commentary; and
d. Literature review.
These exclusion criteria were determined to help ensure that the review is largely focused on empirical and rigorous studies that have undergone peer review processes prior to publication.
Study selection
The initial search of the 5 databases yielded 3706 results. Once duplicates were removed, there were 2964 results. Two independent reviewers screened the titles, abstracts, and keywords of the 2964 results for inclusion and exclusion criteria. Any conflicts between the 2 reviewers were resolved through consultation with this paper’s 2 other co-authors. The first stage of screening led to the identification of 77 documents. These 77 documents underwent a second stage of screening involving a full-text screening to determine if they should be included in the review. The 2 screeners independently reviewed the text of the 77 documents in this second stage, which yielded a total of 22 documents to be included in the review. The remaining 55 documents were excluded because they did not satisfy inclusion criteria (e.g., wrong study scope, population, and geographical location). We had initially excluded 3 literature reviews but opted to include them after the screening due to their relevance to this paper’s topic, which led to us including a total of 25 documents in this review.Figure 1 presents a PRISMA diagram that outlines our review process and its results.
PRISMA diagram.
Data extraction
Working with input from research team members, 2 co-authors reviewed the 25 documents, extracted data, and populated an extraction table. Table 1 below presents a summary of each reviewed study’s author, year, and location; study aims and methods; population and study setting; key findings; and themes.
Summary of reviewed documents
Results
Of the 25 articles included in this review, 21 presented findings from studies geographically located in the United States. The remaining 4 presented findings from studies located in the United Kingdom. Regarding the studies’ specific PPC locations, 8 considered hospice-based PPC, 20 examined home-based PPC, and 17 were focused on hospital-based PPC (some studies examined more than one location where children receive PPC.). Three key themes emerged from our review of the literature concerning PPC and place: (1) factors influencing decisions about the place of PPC, (2) preferences for at-home PPC, and (3) impacts of PPC places on identity and family dynamics.
Factors contributing to place-related PPC decisions
Various complex and intersecting factors contribute to how parents and children make decisions about place of PPC and death. The impending death of a child generates a multitude of individual and family needs, emotional reactions, and shifts in priorities that together impact care planning and decisions about place of care and death (Johnston et al. Reference Johnston, Rosenberg and Kamal2017). Internal family factors (e.g., comfort, familial support, and parent capabilities) and those that are external to the immediate family unit (e.g., access to resources, proximity to medical care, and extended family) all feed into a family’s decision about the place where they want their child to receive PPC.
In a study by Martinson et al. (Reference Martinson, Armstrong and Geis1978), primary caregivers indicated that their key priority was to provide the most comfort possible for their children and that they often desired PPC at home to help with achieving this priority (Martinson et al. Reference Martinson, Armstrong and Geis1978). These parents found the home to be a place where they could more easily create comfortable spaces for their children throughout the dying process. In a different study, the impacts of parents’ belief in their own medical caregiving capabilities were explored (Martinson et al. Reference Martinson, Geis and Anglim1977). The skills and confidence that a parent feels they possess and can apply in providing care to their dying child played a critical role in deciding where their child should receive care (Edwardson Reference Edwardson1983; Martinson et al. Reference Martinson, Geis and Anglim1977). Edwardson et al. (Reference Edwardson1983) found that parents’ feelings of competency concerning the provision of medical care to their child led some to choose home as the place of death, while parents who felt less comfortable providing medical care to their child had a stronger preference for hospital or hospice-based care (Edwardson Reference Edwardson1983).
Access and proximity to resources have also been found to contribute to parents’ decisions about where their child receives PPC. Access to necessary medical equipment that allows for safe and comfortable care at home was highlighted as a large contributing factor to being cared for at home versus a hospital (Taylor et al. Reference Taylor, Murphy and Chambers2021). Meert et al. (Reference Meert, Briller and Myers Schim2008) found that families having access to Health Care Providers while at home was a key factor in decisions about the place of PPC and death, as access to these professionals can create a feeling of security while caring for a child at home (Meert et al. Reference Meert, Briller and Myers Schim2008). Gao et al. (Reference Gao, Verne and Peacock2016) suggested that while home deaths are often preferred, many families at times experience limited access to the services, equipment, and staff needed to adequately and safely support their child at home (Gao et al. Reference Gao, Verne and Peacock2016). For this reason, some families deem the home as an impractical and infeasible place for children’s PPC.
While parents’ preferences for place of PPC must be considered as part of care planning, so too must the preferences of children. However, only 1 (Taylor et al. Reference Taylor, Murphy and Chambers2021) out of the 25 reviewed studies considered children’s preferences regarding their end-of-life care. Taylor et al. (Reference Taylor, Murphy and Chambers2021) found that children valued the quality of care they received more, so than the place where the care was provided. Child participants identified some key aspects of care that they associated with good quality care, irrespective of place, which helped them to feel cared for and safe. These factors included having familiar and accessible specialists with knowledge of their condition, being treated as an individual with autonomy, care providers taking adequate time to understand and meet their unique care needs, and the continuity of relationships with their care providers (Taylor et al. Reference Taylor, Murphy and Chambers2021).
Preferences for at-home PPC
The preference for death at home rather than in hospital-based or hospice-based end-of-life care was evident across the examined literature for a myriad of reasons (Castor et al. Reference Castor, Landgren and Hansson2018; Edwardson Reference Edwardson1983; Gao et al. Reference Gao, Verne and Peacock2016; Martinson et al. Reference Martinson, Armstrong and Geis1978; Needle Reference Needle2010; Sanderson and Burns Reference Sanderson and Burns2017; Vickers et al. Reference Vickers, Thompson and Collins2007). Across studies, privacy, cultural background, grief and bereavement, spirituality, and family life are commonly noted as contributing to families’ preference to receive PPC at home (Castor et al. Reference Castor, Landgren and Hansson2018; Needle Reference Needle2010).
Privacy was among the highest cited factors contributing to parents’ desire for home-based PPC (Meert et al. Reference Meert, Briller and Myers Schim2008; Needle Reference Needle2010; Sanderson and Burns Reference Sanderson and Burns2017). The home fulfills a specific parental need when navigating a child’s end-of-life care, as it offers exclusive physical closeness and comfort with their child and allows for private family conversations (Meert et al. Reference Meert, Briller and Myers Schim2008; Needle Reference Needle2010; Sanderson and Burns Reference Sanderson and Burns2017). Across studies, families highlighted the importance of having privacy during end-of-life care to allow for grieving and difficult discussions with family members without having to deal with lacking privacy and scheduling constraints, both of which are often present in hospital environments (Meert et al. Reference Meert, Briller and Myers Schim2008; Needle Reference Needle2010; Sanderson and Burns Reference Sanderson and Burns2017). Having the privacy of a home throughout, PPC can also add to feelings of comfort and safety when engaging in cultural and religious practices (Sanderson and Burns Reference Sanderson and Burns2017; Tang et al. Reference Tang, Hung and Liu2011). For example, a family’s home serves as a familiar and comfortable physical environment that allows for an intimate, non-judgmental space to practice faith and spirituality and to carry out religion-/culture-specific end-of-life rituals (Needle Reference Needle2010; Sanderson and Burns Reference Sanderson and Burns2017; Tang et al. Reference Tang, Hung and Liu2011). Having the comfort of a home environment to carry out rituals and traditions can add to a family’s closeness and feelings of comfort and safety during the vulnerable end-of-life care period (Needle Reference Needle2010). Home environments and the real and perceived privacy and safety they offer promote a peaceful atmosphere for the child, as well as for family members’ grieving, healing, and psychosocial recovery from a dying child (Castor et al. Reference Castor, Landgren and Hansson2018).
While numerous studies have shown that home is the preferred place for a child to receive PPC, having PPC and a child’s death occur at home can alter how a family views and relates to their home. This, in turn, may affect family dynamics and how a family uses different spaces of their home following a child’s death. In the following section, we consider implications of receiving PPC at home on family dynamics and the grieving process following a child’s death.
Impacts of PPC places on identity and family dynamic
Place plays a critical role in the ways in which family members come to understand their own roles and relationships within the family. Castor et al. found that siblings of children who died at home were more readily able to engage in their typical activities, rather than their lives being strictly governed by their siblings being hospitalized (Castor et al. Reference Castor, Landgren and Hansson2018). This ability for siblings to partake in normal aspects of their lives (e.g., their recreational activities, play dates, sports) as a child receives PPC at home allows for them to experience some degree of normalcy in their everyday lives while also processing anticipatory grief. Siblings of children dying at home have also reported feeling greater connection to their dying sibling and family, as well as feeling more involved in the death process (Castor et al. Reference Castor, Landgren and Hansson2018; Lauer et al. Reference Lauer, Mulhern and Bohne1985). Further, siblings of children who have died at home have also reported that the home environment enabled more adequate preparation for the impending death, direct communication, and parental support (Lauer et al. Reference Lauer, Mulhern and Bohne1985). Alternatively, families of children who have received PPC in hospitals have reported feeling poorly prepared for the impending death, a lack of involvement in the care and dying process, and a sense of isolation from death-related events and the death itself (Lauer et al. Reference Lauer, Mulhern and Bohne1985). Siblings of dying children in home environments appreciated that home care services allowed their family unit to stay together (Castor et al. Reference Castor, Landgren and Hansson2018). Siblings’ feelings of separation from a child’s in-hospital death has been found to lead them to feeling less connected to their family following the death and feeling that their role and presence in the death process was less significant as those whose siblings died at home (Lauer et al. Reference Lauer, Mulhern and Bohne1985). Receiving PPC at home not only strengthened family connections but also provided more opportunities to be together and contribute to care (Castor et al. Reference Castor, Landgren and Hansson2018; Lauer et al. Reference Lauer, Mulhern and Bohne1985). This is because less time and energy was expended traveling back and forth to hospitals, and at home family members are often more involved in supporting PPC (Castor et al. Reference Castor, Landgren and Hansson2018).
Receiving PPC at home has been found to impact the ways in which parents perceive themselves and their ability to provide medical care for their child (Castor et al. Reference Castor, Landgren and Hansson2018; Martinson et al. Reference Martinson, Geis and Anglim1977). Parents whose children received PPC at home were found to have stronger ties and connections to relatives and friends (Castor et al. Reference Castor, Landgren and Hansson2018). At-home PPC can enable families to continue nurturing relationships with family and their surrounding community. Moreover, it can help families to carry on with some regular activities that help to maintain a degree of normalcy within their day-to-day lives and to find reprieves from the remarkable difficulties of a child’s dying process and death (Castor et al. Reference Castor, Landgren and Hansson2018). One study also found that children whose siblings died at home reported the same, or stronger, family cohesion following the death of their sibling compared to children whose siblings died in hospital (Lauer et al. Reference Lauer, Mulhern and Bohne1985). Home-based PPC can also allow for more opportunities to preserve the roles of the parent and sibling (Sanderson and Burns Reference Sanderson and Burns2017). In their examination of parents of children who died at home versus those who died in a hospital, Thienprayoon et al. (Reference Thienprayoon, Lee and Leonard2015) found that parents whose children died at home were quicker to adapt to “normal” social functioning, felt less isolated and less strain on their marriage, and experienced considerably less guilt.
The meanings that we ascribe to a place of PPC and death extend beyond those that are considered and felt during the dying process and at death. That is, the place of PPC and death can impact a family’s relations, QoL, and grieving long after the child has died. Vivid memories of the place where death occurs can affect how feelings of grief are processed long after the child’s death, and revisiting where the death occurs (e.g., the location in one’s home) may affect how those memories are experienced and processed. Meert et al. explored this notion and reported that positive associations with the environment, or aspects of the environment, can comfort parents and ease their bereavement process. Parents who spoke of negative associations with the environment reported more difficult and convoluted grieving processes (Meert et al. Reference Meert, Briller and Myers Schim2008).
The themes that emerged through our analysis of the literature and that are discussed in this paper led us to develop a list of key questions that families of children receiving PPC can ask themselves, reflect upon, and discuss with their health-care practitioners. The questions are intended to help families make an informed decision about the place of PPC that is tailored to their specific circumstances (e.g., their capabilities, preferences, values, rituals, and more). Figure 2 presents the 6 questions.
Questions to aid decisions about the place of PPC.
While research has begun to explore the impact of place on palliative care for children, and their families, many gaps persist. There was a scarcity of research exploring children’s perspectives and desires on where they receive palliative care. It is essential that the views of children are integrated into research that directly impacts their well-being. Further, most of the research to date has focused on hospital-based or home-based PPC, with little focus on hospice care for children. While the literature highlights the preference for PPC to be received at home, to our knowledge, no research has been conducted to explore how a child’s death at home can affect how families experience home after the death. Future research exploring the resultant relationship with the home following the death of a child is warranted. Further, while the preference for PPC at home is evident in the literature, it is imperative that future research explores ways to best provide optimal palliative care at home. Lastly, our literature review explored studies conducted in the Global North. It would be beneficial for future research to consider Global South perspectives and practices pertaining to PPC and place, as they will likely offer further helpful knowledge on this topic.
Conclusion
The place of PPC (typically at home, in hospital, or in hospice) plays a critical role in how PPC is provided and experienced. In this review of 25 articles that explore the relationship between place and PPC, as well as how families experience navigating PPC and the dying process, we have identified some key findings and considerations that can help to inform families’ decisions about the place of PPC.
The literature makes it clear that the place of PPC does not only affect the dying child; rather, it affects how the entire family unit operates, copes, grieves, and manages PPC and a child’s impending death. The place of PPC and death can affect how both parents and siblings come to understand their own role and position within a family, how they interact with/relate to a dying child, how they carry out religious and cultural practices (e.g., end-of-life rituals), and how the family is able to grieve before, during, and after a child’s death. When making decisions about place of PPC, it is important to acknowledge that it represents more than just where care is received. Place of PPC represents and affects the privacy a family is granted, the freedom to practice and adhere to spiritual, religious, and cultural practices, and the ability to be empowered and integrated, in a meaningful way, into the death process. While many families may prefer to receive end-of-life care at home due to a multitude of factors (e.g., comfort for the child, greater involvement in care provision, and easier for siblings), this is not always possible (e.g., if parents are not capable of/confident about providing the necessary support, if at-home PPC supports are unavailable).
It is important that families undergoing PPC are able to experience privacy, the freedom to carry out spiritual/religious/cultural practices and be involved in the PPC provision and dying process regardless of where PPC is received. It therefore may be practical for some pediatric hospitals to consider redesigning a selection of rooms for PPC purposes so that they provide a place of PPC that better accounts for the needs of not only the dying child but also the child’s siblings and parents. For example, attention could be given to creating some fully private rooms with ample space and comfortable seating for family members, offering religious/cultural symbols and services upon request in multiple languages, providing lounge space where family members can grieve and have private discussions away from the child, as well as support programming for siblings.
The place of a child’s death may impact how families come to recognize their own roles within the family dynamic. When navigating the dying process, families are not only processing the impending death of their loved one in the place they choose for the child’s care and death. The place – that is, its privacy, comfort, PPC supports – all become part of the family’s coping and grieving process. For example, a child’s death at home may bring about difficult emotions associated with entering and using the room or space where the child died, which could warrant consideration for some when making decisions about place of PPC and death.
Alarmingly, among the 25 reviewed studies, only one study included the voices of children. In pediatric research, it is still common for parents’ voices to be prioritized and viewed as representative of the opinions and perspectives of the child. However, it is essential that we recognize the value and agency of children’s input in care-related decisions (Harcourt and Einarsdottir Reference Harcourt and Einarsdottir2011; James et al. Reference James, A. and Prout1990), including those pertaining to PPC. Children are experts on their own lives, needs, and desires, and it is critical that the ways and places in which they want to receive care and experience life, at the end of life, is planned in alignment with their values and desires (Taylor et al. Reference Taylor, Murphy and Chambers2021).
While place has largely been considered in geography, architecture, and urban planning research, this scoping review highlights the importance of considering place in health care and, specifically, PPC. The meanings we ascribe to physical spaces impact the ways in which care is experienced for children receiving palliative care and their families. We hope this paper acts as a catalyst for future research in this area to further advance our knowledge of ways in which place and PPC are experienced so we can best support this vulnerable population. Further, we encourage readers to use Figure 2 as a takeaway tool that can help families to make informed and meaningful decisions regarding the place and PPC. This review represents an important first step in understanding the importance of and preferences for place when receiving PPC, and it offers a strong foundation to impact clinical care and drive future studies.
Acknowledgments
The authors wish to thank Health Sciences Librarian, Iveta Lewis, for her support in crafting the review strategy for this project. They are also grateful to the Kimel Family for its generous support of the Holland Bloorview Ward Summer Student Program, which allowed a summer student (D.N.) to work on this project.
Competing interests
None declared.
