Introduction
Despite therapeutic advances, advanced cancer continues to carry a poor prognosis (Sung et al. Reference Sung, Ferlay and Siegel2021). For these patients, palliative care holds an important role, as it seeks to improve quality of life for patients and families through early identification and management of pain and other symptoms, as well as attending to psychosocial and spiritual issues (Radbruch et al. Reference Radbruch, De Lima and Knaul2020; Rome et al. Reference Rome, Luminais and Bourgeois2011). An important goal of palliative care is to initiate discussions about where patients wish to receive end-of-life care and eventually die. In an international population survey of 9344 patients living with a serious illness, including advanced cancer, up to 84% reported home as their preferred place of death (Gomes et al. Reference Gomes, Higginson and Calanzani2012). Despite these strong preferences for a home death, a smaller proportion of up to 46% of cancer deaths have been recorded to occur within the home (Cohen et al. Reference Cohen, Pivodic and Miccinesi2015). This disparity between preferred and actual place of death deserves consideration, given achievement of patient end-of-life wishes is an essential indicator for quality of death (Meier et al. Reference Meier, Gallegos and Thomas2016).
Family carers are a key player in enabling home end-of-life care and death, with responsibilities such as complex medical management, identifying and reporting side effects of treatment, administering medications, and co-ordination of care (Aranda and Hayman-White Reference Aranda and Hayman-White2001; Gomes and Higginson Reference Gomes and Higginson2006). Carers manage these responsibilities while also navigating the challenging emotional terrain of their loved one who has cancer. Indeed, the burden experienced by family carers is well documented, and this is compounded because of family carers’ relative inexperience in providing complex clinical care at home (Kristjanson and Aoun Reference Kristjanson and Aoun2004). This can lead to high levels of stress and reduced quality of life among family carers as well as poorer outcomes for patients, highlighting an important area requiring greater attention (Oechsle et al. Reference Oechsle, Ullrich and Marx2020).
While dying at home is considered a key indicator of quality end-of-life care, the emotional stress and burden of caring for someone with advanced cancer at home are significant and may affect the possibility of achieving a home death. Therefore, it is important to question if and how carers may be supported in providing this care. Frameworks in psychology may guide our understanding of the emotional stress experienced by family carers and offer solutions for reducing this stress. One such framework is Lazarus and Folkman’s stress and coping framework, which proposes that psychological distress results from an imbalance between the demands placed on a person and the resources available to them for coping, including skills, abilities, and emotional and informational resources (Folkman et al. Reference Folkman, Lazarus and Dunkel-Schetter1986). The framework further suggests that effective coping requires the provision of adequate resources for dealing with stressful situations. Therefore, ensuring family carers have access to the resources required to facilitate greater preparedness for the caregiving role may well influence their ability to manage the responsibilities associated with this role (Holm et al. Reference Holm, Henriksson and Carlander2015). This may help reduce distress and sense of burden of care among family members, while also enabling a higher quality of care for patients with advanced cancer at home, and potentially reduce costs of care to the community.
Understanding and addressing the needs of family carers is important to minimize family burnout and allow them to better support their loved ones’ preference to die within the home. The aim of this narrative review was to gain insight into family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on identifying various factors that influence their perceived preparedness for their role. A review of qualitative studies was chosen to provide rich and in-depth data on family carers’ experiences and allow for the identification of descriptive themes to be derived for interpretation.
Methods
A narrative review of the existing literature relating to family carers’ experiences of providing end-of-life care at home for patients with advanced cancer was undertaken, with emphasis on exploring factors that influence how prepared carers feel for their role.
Search strategy
An electronic literature search of articles published in English between January 2011 and August 2021 was conducted in PubMed, Medline, Embase, and PsychINFO and included MeSH (PubMed) or Emtree (EMBASE) terms, and free-text words. The following search terms were used: (“cancer” OR “malignancy” OR “oncology” OR “neoplasm”) AND (“caregiver” OR “carer” OR “informal carer” OR “informal caregiver” OR “family” OR “spouse”) AND (“terminal care” OR “supportive care” OR “end of life care” OR “palliative care”) AND (“home” OR “community” OR “out of hospital”) AND (“qualitative” OR “mixed methods”). Additionally, the following sources were searched: (a) Grey literature through Google Scholar; (b) reference lists of identified eligible articles for relevant studies; and (c) hand search of identified eligible articles for further research carried out by the authors.
Inclusion and exclusion criteria
Articles were included if they reported on empirical qualitative research, were published in a peer-reviewed journal in the English language, and reported experiences of adult family caregivers, i.e., ≥18 years, of adult patients with advanced cancer. Further, only articles reporting aspects regarding experiences of preparedness for care provision at home and/or family perspectives of the information and support provided were included. Studies were excluded if they only reported outcomes for carers of pediatric patients, evaluated the impact of an intervention or transitions between in-patient and community care, or if they primarily focused on pain management difficulties in the home setting, or solely on the dying experience.
Screening
One author (E.O.) identified potentially relevant articles by reviewing the titles and abstracts retrieved from the databases. Articles identified as potentially relevant were exported to EndNote, where duplicates were manually checked and removed. After this, 3 assessors (E.O., J.P., and N.Z.) screened the records based on the title, abstract, and full text for inclusion. Based on the inclusion criteria, several articles were excluded at different phases of this review. Consensus was achieved through discussion.
Quality appraisal
The included studies were individually assessed against the Critical Appraisal Skills Programme (CASP) for qualitative research studies, a 10-item checklist that evaluates study quality. The checklist includes items ranging from a clear statement of study aims to a logical flow of ideas from stated aims to conclusions drawn (Treloar et al. Reference Treloar, Champness and Simpson2000). Additional items assessed included an appropriate description of sampling strategies, data analysis methods, and consideration of, and efforts to minimize, the factors which impact on data validity and reliability.
Data extraction and synthesis
Data were extracted independently by 1 author (E.O.) using a customized Excel database and included the following:
• Aim(s)
• Sampling
• Analysis
• Sample
• Results
• Study limitations
Analysis
Results of included studies were subjected to thematic analysis. This involved the initial reading and re-reading of the primary data presented in the studies. Findings from individual studies relevant to the experience of family carer preparedness were then identified and grouped according to emerging ideas by EO. These emerging ideas were subsequently reviewed and discussed by the broader study team (J.P. and N.Z.) and a consensus was reached on the key themes arising from the analysis of the collective data, which have been refined for presentation here. Ethics approval was not required.
Results
Search results
The database search yielded a total of 876 potentially relevant studies. After the removal of duplicates, 537 studies were screened for eligibility based on their abstract. Of these, a further 512 studies were excluded for the following reasons: conference abstracts only, caregivers of pediatric patients only, and pain management focus only. Full-text copies were obtained of the 25 studies. After inspection, a further 11 studies were excluded as they did not adequately specify home as the location of care and included caregivers of noncancer patients. In total, 14 studies fulfilled the eligibility criteria and were included in the review (Fig. 1).
Figure 1. The preferred reporting items for systematic reviews and meta-analyses (PRISMA) flow diagram.
Characteristics and quality of included studies
Of the 14 studies included in the review, 10 were conducted in Europe (United Kingdom, Norway, Sweden, and the Netherlands), while the remaining 4 were conducted in Canada, Ghana, and Singapore. The studies were conducted between 2011 and 2021 and involved a total of 314 participants with ages ranging from 21 to 94. Carers were predominantly women. Seven studies reported the experiences of current caregivers to living patients with advanced cancer, while the remainder related the experiences of bereaved cancer caregivers. Twelve studies utilized purposive sampling techniques, with a minority using mixed sampling and consecutive patient series sampling. Data analysis approaches employed by the studies included thematic analysis (13 studies) and grounded theory analysis (1 study).
The included studies addressed most of the criteria presented in the CASP checklist. At a minimum, study aims were specified, with appropriate reasoning provided for the qualitative approach. Data collection and analysis methods were also described in sufficient detail (Treloar et al. Reference Treloar, Champness and Simpson2000). The items that distinguished some studies from others were whether an underlying conceptual framework for the study was described. Half of the studies clearly described a theoretical framework as the basis of their research question, while others did not specify this. Another distinguishing feature was the level of consideration given to threats to study validity and reliability. All included studies addressed this by using multiple researchers to analyze the data and acknowledging the potential biases in participant recruitment conducted by health-care professionals (HCPs). Three studies specifically detailed additional steps to strengthen data validity, including utilizing testimonial validity checks, an audit trail, and conducting the analysis process in line with a series of credibility checks. Further details, including the summarized findings of the studies, are provided in Table 1.
Table 1. Summary of included studies and their characteristics
HCPs = health-care professionals, NR = not reported, N = no theoretical framework described, Y = theoretical framework described, and listed accordingly.
“Motivations” is abbreviated for motivations for providing care, “HCPs” abbreviated for interactions with health-care professionals – enablers and barriers, “changes” abbreviated for changes in the caregiving trajectory.
a Results listed as factors identified which facilitated or impacted on the experience of preparedness and family carer coping. The theme that each factor can be grouped under is listed in the column to the right, with some factors grouped under more than 1 theme.
✓ = addressed study validity and reliability.
✓✓ = addressed study validity and reliability to a higher level, additional methods used listed accordingly.
Results from qualitative analysis
Analysis of the qualitative data revealed a consistent report of family carers feeling ill-prepared for their role (Barlund et al. Reference Barlund, André and Sand2021; Devik et al. Reference Devik, Hellzen and Enmarker2017; Leow and Chan Reference Leow and Chan2017; Mohammed et al. Reference Mohammed, Swami and Pope2018; Salifu et al. Reference Salifu, Almack and Caswell2021; Tarberg et al. Reference Tarberg, Kvangarsnes and Hole2019; Totman et al. Reference Totman, Pistrang and Smith2015). Family carers described their caregiving responsibilities as complex and challenging but persevered despite feeling ill-prepared. Managing these concerns while also managing their worry about their loved one’s advanced cancer led to feelings of distress (Epiphaniou et al. Reference Epiphaniou, Hamilton and Bridger2012; Salifu et al. Reference Salifu, Almack and Caswell2021; Totman et al. Reference Totman, Pistrang and Smith2015). Three main themes reflecting the key factors influencing family preparedness for their role emerged from the thematic analysis of the qualitative studies; (A) motivations for providing care, (B) interactions with health-care professionals, and (C) changes during the caring process.
(A). Motivations for providing care
There were a variety of factors motivating family members to provide end-of-life care at home for patients with advanced cancer. Of these, family values emerged as a strong motivator that underpinned the willingness of family members to adopt and continue in the carer role (Barlund et al. Reference Barlund, André and Sand2021; Robinson et al. Reference Robinson, Bottorff and McFee2017). That is, family carers wished to maintain patient well-being by facilitating end-of-life care in a place that the patient would find comfortable and familiar (Barlund et al. Reference Barlund, André and Sand2021; Robinson et al. Reference Robinson, Bottorff and McFee2017). For adult children who provided care to an ill parent, a duty to “give back” the love they had received from their parents was also a contributing factor (Leow and Chan Reference Leow and Chan2017; Robinson et al. Reference Robinson, Bottorff and McFee2017; Salifu et al. Reference Salifu, Almack and Caswell2021). Even in situations where palliative home care was driven by necessity due to an under-resourced medical system, the desire to protect and support the patient underpinned families’ decision to provide end-of-life care at home (Salifu et al. Reference Salifu, Almack and Caswell2021). These values altogether helped family members to remain committed to their caregiving role and provided the motivation needed to navigate the complex challenges associated with caregiving (Robinson et al. Reference Robinson, Bottorff and McFee2017; Totman et al. Reference Totman, Pistrang and Smith2015).
Some family members reported feeling pressure to accept the role of caregiving and a lack of choice due to social expectations for them to care for an ill family member (Salifu et al. Reference Salifu, Almack and Caswell2021). Family members who had a strong desire to protect the patient described a better sense of perceived preparedness for their role, while those who were influenced by social expectations frequently described apprehension. Flow on effects also emerged after the patient’s death, where carers driven by family values described an emotionally rewarding experience which strengthened family ties, encouraged personal growth, and a greater appreciation for life (Leow and Chan Reference Leow and Chan2017; Pottle et al. Reference Pottle, Hiscock and Neal2020).
(B). Interactions with health-care professionals and systems – enablers and barriers
Many family carers reported receiving support from palliative care services and general practitioners. The introduction of palliative care during the early stages of the patient’s disease trajectory enabled family carers to feel more prepared (Barlund et al. Reference Barlund, André and Sand2021; Robinson et al. Reference Robinson, Bottorff and McFee2017). In a practical sense, having HCPs involved enabled access to resources and education to assist families in the management of the patient’s condition (Klarare et al. Reference Klarare, Rasmussen and Fossum2018). From a psychological perspective, family carers viewed HCPs as an important support system, who helped to alleviate the burden of responsibility and reduced their sense of isolation (Leow and Chan Reference Leow and Chan2017). Those who provided care within the home without formal support from health-care services often described feeling overwhelmed and reported challenges such as misinterpreting patient symptoms (Salifu et al. Reference Salifu, Almack and Caswell2021).
Interactions between HCPs and family carers were broadly categorized into enablers of, or barriers to families feeling prepared for their role. HCPs who displayed empathy and conveyed a person-centered approach and interest in the patient and their family carers’ well-being were appreciated by family carers. Families described these qualities as important to build their trust in HCPs and reassured them that they were part of a team that worked together to optimize the patient’s well-being (Klarare et al. Reference Klarare, Rasmussen and Fossum2018; Robinson et al. Reference Robinson, Bottorff and McFee2017).
Family carers wished to see HCPs demonstrate medical competency and placed great importance on having continuity in HCPs involved, alongside their availability and responsiveness to concerns (Barlund et al. Reference Barlund, André and Sand2021; Fjose et al. Reference Fjose, Eilertsen and Kirkevold2018; Klarare et al. Reference Klarare, Rasmussen and Fossum2018; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019). For example, family carers expressed appreciation when HCPs were able to make additional home visits when the need arose (Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019). Another enabler to perceived preparedness was family recognition, with carers reporting that they valued HCPs who sought their opinion and asked how they were coping (Klarare et al. Reference Klarare, Rasmussen and Fossum2018). A specific area wherein family carers wished to speak up more was in assessment of the patient’s pain, which was based on carers seeing themselves as best placed to detect changes in the patient’s behavior, while HCPs were frequently perceived to underestimate the patient’s pain (Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019). Family carers reported that their views were often dismissed in these instances, and expressed a wish for their input to be heard by HCPs and incorporated into decisions surrounding care (Klarare et al. Reference Klarare, Rasmussen and Fossum2018).
Barriers to caregivers’ perceived preparedness were also identified. Family carers reported a need for clear care descriptions of their own role and responsibilities versus those of HCPs (Barlund et al. Reference Barlund, André and Sand2021; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019). Some family carers expressed having inadequate understanding of the exact requirements of their role, which frequently led to increasing stress over time (Mohammed et al. Reference Mohammed, Swami and Pope2018). Additionally, family carers felt frustrated when care was fragmented. For example, some carers were unsure who to contact when care needed to be escalated as a central contact person had not been identified (Barlund et al. Reference Barlund, André and Sand2021; Tarberg et al. Reference Tarberg, Kvangarsnes and Hole2019). There also appeared to be a lack of clear communication between HCPs and different services involved, which became evident when carers had repetitive conversations with the different parties involved (Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019). Family carers described these as barriers to their sense of preparedness and expressed a need for an improved system wherein HCPs provide assistance with their new responsibilities (Klarare et al. Reference Klarare, Rasmussen and Fossum2018).
Another commonly reported barrier was information inadequacy (Tarberg et al. Reference Tarberg, Kvangarsnes and Hole2019). That is, families described a mismatch between their actual information needs and their needs as perceived by HCPs (Pottle et al. Reference Pottle, Hiscock and Neal2020). Family carers expressed a strong desire to have more information about the patients’ prognosis and expected disease trajectory (Totman et al. Reference Totman, Pistrang and Smith2015). While carers recognized that this may not always be possible given uncertainties in the disease trajectory, they wanted HCPs to initiate these challenging conversations as they valued open and honest communication about prognostic information, despite its inherent uncertainties and the risks of forming expectations based on an unreliable estimate (Barlund et al. Reference Barlund, André and Sand2021; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019; Pottle et al. Reference Pottle, Hiscock and Neal2020). Overlooking these conversations had consequences, as families had inadequate information regarding their loved one’s prognosis, which contributed to them feeling unprepared for what lay ahead (Harding et al. Reference Harding, Epiphaniou and Hamilton2012). Family carers also wanted information about what to expect during the terminal phase and described experiences of being unprepared for the patients’ death which led to considerable distress (Totman et al. Reference Totman, Pistrang and Smith2015). Carers expressed a need for comprehensive HCP-directed education on death, including explanations on possible end-of-life symptoms and how they can differentiate these from baseline deterioration (Barlund et al. Reference Barlund, André and Sand2021; Harding et al. Reference Harding, Epiphaniou and Hamilton2012; Salifu et al. Reference Salifu, Almack and Caswell2021).
In some circumstances, the desire for more information on the patient’s prognosis appeared to be in conflict with the patient’s own needs for information (Pottle et al. Reference Pottle, Hiscock and Neal2020). Family carers described instances when patients expressed their wish not to know their deteriorating health status, while families themselves desired frank and early discussions about the illness progression (Barlund et al. Reference Barlund, André and Sand2021; Totman et al. Reference Totman, Pistrang and Smith2015). Ultimately, patient preferences were prioritized and family members’ need for information was unmet in these instances (Epiphaniou et al. Reference Epiphaniou, Hamilton and Bridger2012). These issues were perceived as belonging more broadly to the lack of family carer recognition in many important decisions surrounding care (Tarberg et al. Reference Tarberg, Kvangarsnes and Hole2019).
(C). Evolving changes in the caregiving trajectory
Family carers identified changes throughout the process of providing care to their loved one in the home environment. Witnessing the decline in the patient’s physical and mental health was distressing for family carers (Leow and Chan Reference Leow and Chan2017). This was particularly overwhelming when the patient’s disease progressed and there was greater reliance on family carers to provide care in the home setting. Family carers commonly reported feeling helpless and guilty as they witnessed their loved one’s suffering first-hand (Devik et al. Reference Devik, Hellzen and Enmarker2017). These descriptions appeared to reflect a perceived inadequacy of the support that they provided at home (Totman et al. Reference Totman, Pistrang and Smith2015). Family carers had to adapt as they became the patient’s advocate, learnt new practical and clinical skills, and sacrificed aspects of their own life to fulfill the caregiving role (Devik et al. Reference Devik, Hellzen and Enmarker2017; Fjose et al. Reference Fjose, Eilertsen and Kirkevold2018; Leow and Chan Reference Leow and Chan2017; Oosterveld-Vlug et al. Reference Oosterveld-Vlug, Custers and Hofstede2019; Robinson et al. Reference Robinson, Bottorff and McFee2017; Totman et al. Reference Totman, Pistrang and Smith2015).
Family carers also described that the dynamics of their relationship with the patient changed (Totman et al. Reference Totman, Pistrang and Smith2015). The dual role of being both family member and carer required a professional perspective which interfered with their ability to relate to their loved one on an intimate level (Totman et al. Reference Totman, Pistrang and Smith2015). Similarly, the home was seen as being changed from a place of comfort and privacy to a site for health-care provision (Barlund et al. Reference Barlund, André and Sand2021; Pottle et al. Reference Pottle, Hiscock and Neal2020). Changes within the home, such as medical equipment and presence of HCPs, became part of daily routine and led to a perceived loss of normality and privacy (Pottle et al. Reference Pottle, Hiscock and Neal2020).
While some of these changes were understood to be inevitable, family carers described a need to be better informed of the disease trajectory in order to avoid unexpected distress associated with the patients’ physical deterioration (Leow and Chan Reference Leow and Chan2017). Families also wished for a clear understanding of caregiving goals and clarification that the objective of end-of-life care was not to delay illness progression, but rather to prioritize the patient’s comfort (Fjose et al. Reference Fjose, Eilertsen and Kirkevold2018; Robinson et al. Reference Robinson, Bottorff and McFee2017). Support from family and friends was described as crucial and decreased the burden of care (Epiphaniou et al. Reference Epiphaniou, Hamilton and Bridger2012). Family carers also expressed the desire to hear stories from caregivers with similar lived experiences. Support groups where they could share and learn from other family carers were sought after and perceived as important (Harding et al. Reference Harding, Epiphaniou and Hamilton2012).
Discussion
Family carers have been recognized as essential stakeholders in end-of-life care within the home for people with advanced cancer (Gomes and Higginson Reference Gomes and Higginson2006). This review of qualitative literature revealed that in order to better facilitate caregivers’ perceived preparedness and reduce their burden of caregiving, a greater emphasis on education, information, and establishing a good working relationship between families and HCPs should be prioritized (Bee et al. Reference Bee, Barnes and Luker2009).
Lazarus and Folkman’s stress and coping framework proposes that psychological distress results from an imbalance between the demands placed on a person and the resources available to them for coping (Folkman et al. Reference Folkman, Lazarus and Dunkel-Schetter1986). In the case of family carers providing end-of-life care at home, the unfamiliarity and complexity of the role can lead to a perceived threat. Family carers had no prior experience in caregiving yet were required to navigate complex issues which arise in end-of-life care. This sense of threat may promote stress and maladaptive coping responses, and may contribute to high levels of carer depression previously reported (Oechsle et al. Reference Oechsle, Ullrich and Marx2020). Although many of the challenges of providing home end-of-life care appear to be intrinsic to the role itself, attention to areas of concern raised in this review may serve to enhance family carer preparedness for the role and thereby reduce the perceived level of threat posed to families and facilitate healthy coping mechanisms.
Indeed, previous research has shown family carer preparedness is associated with improved outcomes in family well-being and the fulfillment of the patient’s preference to die at home (Jack and O’Brien Reference Jack and O’Brien2010). From this review, it is clear that the factors identified by family carers as important in shaping their preparedness are interconnected and manifest throughout the caregiving trajectory, from first considering their motivations for providing care to the time of the patient’s death. This suggests that family carers consider being prepared to involve an ongoing sense of readiness as they move through the various stages of providing care.
Based on this, we could infer that there are multiple opportunities to enhance family carers’ preparedness. Existing research evaluating the efficacy of psychosocial and educational interventions for families addresses this opportunity through the delivery of consecutive education and support sessions over time (Badr et al. Reference Badr, Smith and Goldstein2015; Dionne-Odom et al. Reference Dionne-Odom, Azuero and Lyons2015; Holm et al. Reference Holm, Årestedt and Carlander2016). However, to maximize the opportunities available for enhancing family carers’ preparedness, future studies should implement longer-term interventions that deliver sustained support for families throughout the duration of care. This is likely to be challenging given the high attrition rates evidenced in previous studies (Dionne-Odom et al. Reference Dionne-Odom, Azuero and Lyons2015; DuBenske et al. Reference DuBenske, Gustafson and Namkoong2014).
A key finding of this review was the value family carers placed on forming relationships with HCPs based on trust and mutual respect. As a foundation of this collaborative relationship, carers held the expectation that they would be adequately informed of key aspects in the provision of care, including the patient’s prognosis, anticipated course of illness, and common end-of-life symptoms. This supports conclusions from previous reviews, where unmet information needs were a limiting factor in carer preparedness (Bee et al. Reference Bee, Barnes and Luker2009). Accordingly, interventions to meet families’ information needs based on education and training in the skills of providing care have been evaluated in a number of research studies, as summarized by a recent review (Ahn et al. Reference Ahn, Romo and Campbell2020). These interventions encompassed a wide range of formats, from phone counseling sessions to tailored education manuals and programs, specialized caregiver nurses, and electronic resources. The shared outcome of these studies was that educational interventions have had positive effects on family carers’ perceived ability to cope with their role and have helped to reduce carer burden (Badr et al. Reference Badr, Smith and Goldstein2015; DuBenske et al. Reference DuBenske, Gustafson and Namkoong2014; Sun et al. Reference Sun, Grant and Freeman2015).
Family carers commonly described gaps in their access to information, which could be attributed to an underestimation of their information needs by HCPs. In response, Ewing and Grande have developed the Carer Support Needs Assessment Tool (CSNAT) to identify domains in which carers require increased support, such as their understanding of the patient’s illness and access to assistance to carry out caregiving responsibilities (Ewing and Grande Reference Ewing and Grande2013). The CSNAT has proven to be a valid and reliable tool from both family carers’ and HCPs’ perspectives, and its use in clinical practice has demonstrated a significant reduction in caregiver burden (Alvariza et al. Reference Alvariza, Holm and Benkel2018; Aoun et al. Reference Aoun, Grande and Howting2015).
Another important finding is the influence of family carers’ own expectations on their perceived sense of preparedness. Family carers bring different expectations into their role, from the responsibilities they envision to be a part of the role to the level of support they wish and expect to receive from HCPs. When experiences differ from families’ expectations, their sense of preparedness is likely diminished. An alternative approach to ensuring family preparedness would therefore be to align experiences more closely with expectations. This could be achieved through active efforts by HCPs to inquire specifically about families’ expectations and, where practical, tailor the supports provided to meet these expectations. These efforts would also emphasize the recognition of family carers by HCPs, thereby strengthening the working relationship between families and HCPs. This approach also identifies an opportunity for HCPs to use the CSNAT to identify carers’ expectations on support provided based on their reported areas of need and subsequently deliver targeted support to meet these expectations.
Alternatively, in situations where families’ expectations cannot be reasonably met due to constraints of the clinical setting or limitations in resource and HCP availability, HCPs may need to discuss with family carers the scope of support that is possible, and in the process, help adjust carers’ expectations. This approach is receiving attention in this research field, with a recent study assessing an intervention designed to specifically address areas of reported need as informed by the CSNAT, which demonstrated a small improvement in carers’ psychological outcomes (Grande et al. Reference Grande, Austin and Ewing2017). The study described limitations in maintaining consistency of interventions across different participating services, which also highlights one of the practical barriers to integrating streamlined support for family carers in clinical practice (Grande et al. Reference Grande, Austin and Ewing2017). Despite these limitations, the impact of this study cannot be understated as it represents a move towards family carer led and targeted interventions. The integration of the CSNAT tool, and CSNAT-based intervention into routine clinical practice is the focus of work currently underway, with the impact of widespread implementation yet to be realized (Diffin et al. Reference Diffin, Ewing and Grande2018).
Limitations
This review has several limitations that need to be noted. First, only English articles were included, with a geographical concentration in European countries. The experiences of caregivers in other countries may differ according to different health-care systems and cultural responses. Second, a narrow focus was adopted to identify articles relevant to family preparedness. There may be elements within the broader perspective of family experiences, such as previous health-care encounters or differing family dynamics, which are indirectly related to preparedness and not represented here. Third, as acknowledged by most of the studies, selection bias is likely to be present, given their recruitment strategy relied on HCPs to identify suitable candidates. Last, as half of the studies described bereaved caregivers, it is important to consider recall bias as influencing the data gathered.
Conclusion
Ensuring preparedness of family carers providing end-of-life care at home for patients with advanced cancer may reduce their caregiving burden, facilitate a more sustainable caregiving role, and, in turn, benefit patients who are more likely to achieve their preferences for a home death. The key areas by which HCPs may increase family carer preparedness include the promotion of family integration into care, the recognition of families’ specific information needs and implementation strategies to ensure these are met. The evidence base underpinning interventions to support family carers is expanding rapidly, and future research is increasingly focusing attention upon further refining strategies for their widespread implementation into clinical practice.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951523001013
Author contributions
All authors contributed to the literature review and analysis process. The first draft of the manuscript was written by E.O. and all authors (E.O., J.P., and N.Z.) commented on previous versions of the manuscript. All authors read, edited, and approved the final manuscript.
Funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Competing interests
None to declare.
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