Thematic Analysis

Guided by our research question, we were able to identify specific challenges related to psychosocial aspects of care that pointed to gaps in services/programs. In addition, we were able to tease out potential opportunities from the widespread challenges that patients, caregivers, and health care providers faced. As we embarked on our analysis of the literature, we realized that many of the included articles not only focused on services directly related to psychosocial aspects of care, but also included medical and or practical factors important to support aging and dying in place with an impact on psychosocial health (Aoun, Ewing, Grande, Toye, & Bear, Reference Aoun, Ewing, Grande, Toye and Bear2018; Danielsen, Sand, Rosland, & Førland, Reference Danielsen, Sand, Rosland and Førland2018; Ewing, Brundle, Payne, & Grande, Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Fukui, Fujita, Tsujimura, Sumikawa, & Hayashi, Reference Fukui, Fujita, Tsujimura, Sumikawa and Hayashi2011; Gomes, Calanzani, Koffman, & Higginson, Reference Gomes, Calanzani, Koffman and Higginson2015; Hashem, Brigden, Wilson, & Butler, Reference Hashem, Brigden, Wilson and Butler2020; Hutchinson & Van Wissen, Reference Hutchinson and Van Wissen2017; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Lee et al., Reference Lee, Melia, Yao, Lin, Chiu and Hu2013; Mills, Rosenberg, & McInerney, Reference Mills, Rosenberg and McInerney2015; Mogan, Lloyd-Williams, Harrison Dening, & Dowrick, Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Morris, King, Turner, & Payne, Reference Morris, King, Turner and Payne2015; Oliver, Reference Oliver2010; Phongtankuel et al., Reference Phongtankuel, Scherban, Reid, Finley, Martin and Dennis2016; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Sims-Gould & Martin-Matthews, Reference Sims-Gould and Martin-Matthews2010; Turner & Flemming, Reference Turner and Flemming2019; Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019; Wilson & Birch, Reference Wilson and Birch2017). We then expanded our original concept of “services/programs” to include practical and medical aspects of care. We identified four main themes: (1) lack of preparation for the journey ahead, (2) lack of attention to the whole person, (3) lack of collaborative and trusting relationships, and (4) facilitating caregiving at home. The first three themes are directly linked to our research question; the fourth one goes beyond the original goal and summarizes ways to address the challenges identified in the literature.

Lack of preparation for the journey ahead

Emotional turmoil. Both caregivers and patients experienced positive and negative feelings that changed as the end-of-life trajectory unfolded (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hutchinson & Van Wissen, Reference Hutchinson and Van Wissen2017; Lee et al., Reference Lee, Melia, Yao, Lin, Chiu and Hu2013; Wilson & Birch, Reference Wilson and Birch2017; Woodman, Baillie, & Sivell, Reference Woodman, Baillie and Sivell2015). Positive feelings included peacefulness, a sense of giving back, and a sense of accomplishment in supporting the wishes of loved ones to die at home (Hammond & Baxter, Reference Hammond, Baxter, Holtslander, Peacock and Bally2019; Heath, Carey, & Chong, Reference Heath, Carey and Chong2018; Hutchinson & Van Wissen, Reference Hutchinson and Van Wissen2017; Lee et al., Reference Lee, Melia, Yao, Lin, Chiu and Hu2013; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Totman, Pistrang, Smith, Hennessey, & Martin, Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). These positive responses contrasted with feelings of guilt and despair, particularly for caregivers who could not keep their aging person within a familial environment, or when patients’ end-of-life preferences were not fulfilled (Heath et al., Reference Heath, Carey and Chong2018; Woodman et al., Reference Woodman, Baillie and Sivell2015).

Caregivers’ physical and psychological health were impacted by the demands of the caregiving role, and depression and anxiety were often reported (DiGiacomo, Davidson, Byles, & Nolan, Reference DiGiacomo, Davidson, Byles and Nolan2013; Dionne-Odom et al., Reference Dionne-Odom, Applebaum, Ornstein, Azuero, Warren and Taylor2017; Jack, O’Brien, Scrutton, Baldry, & Groves, Reference Jack, O’Brien, Scrutton, Baldry and Groves2014; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). Feeling homebound and sleep deprived contributed to the emotional distress of caregivers (Morris et al., Reference Morris, King, Turner and Payne2015; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). In addition, a sense of responsibility for patients’ well-being seemed to exacerbate the burden of caregiving (Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015).

Depression and anxiety affected patients at end of their lives (Fukui et al., Reference Fukui, Fujita, Tsujimura, Sumikawa and Hayashi2011; Vassal, Le Coz, Hervé, Matillon, & Chapuis, Reference Vassal, Le Coz, Hervé, Matillon and Chapuis2011). Fukui et al. (Reference Fukui, Fujita, Tsujimura, Sumikawa and Hayashi2011) reported that palliative cancer patients experiencing depression and anxiety prior to discharge from hospital to home-care settings were less likely to have a home death than those who did not report depression and anxiety. Home death, however, was reported to positively influence bereaved caregivers’ mental health (Hatano et al., Reference Hatano, Aoyama, Morita, Yamaguchi, Maeda and Kizawa2017).

Grief, including anticipatory grief, was a major challenge for caregivers. They valued bereavement support, although they did not always receive it (Aoun, Breen, White, Rumbold, & Kellehear, Reference Aoun, Breen, White, Rumbold and Kellehear2018; Bainbridge & Seow, Reference Bainbridge and Seow2018; Ewing & Grande, Reference Ewing and Grande2012; Hughes, Noyes, Eckley, & Pritchard, Reference Hughes, Noyes, Eckley and Pritchard2019; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). The reactive, rather than proactive, nature of bereavement supports, or the lack of services were frequently seen as problematic and resulted in many caregivers foregoing support altogether (Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019).

Relating to others. Loss of mobility associated with physical decline evoked an emotional response from patients, sometimes expressed as a sense of shame. For example, this feeling could, in turn, result in perceived social isolation, as patients avoided going outside because of their sense of shame about requiring walking aids (Nicholson, Meyer, Flatley, & Holman, Reference Nicholson, Meyer, Flatley and Holman2013). Loneliness and isolation were very common for aging and dying persons and their caregivers. These two commonly related experiences were compounded by the absence of a support network, frequently constituting the main barrier to aging and dying at home (Turner & Flemming, Reference Turner and Flemming2019). In general, these issues were inadequately addressed, with very little or no preparation for what was ahead (Hammond & Baxter, Reference Hammond, Baxter, Holtslander, Peacock and Bally2019; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Morris et al., Reference Morris, King, Turner and Payne2015; Pleschberger & Wosko, Reference Pleschberger and Wosko2015; Sixsmith et al., Reference Sixsmith, Fang, Woolrych, Canham, Battersby, Ren, Hankivsky and Jordan-Zachery2019; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Woodman et al., Reference Woodman, Baillie and Sivell2015).

Losing the relationship once held with the dying person and grieving before the death was particularly challenging for caregivers (Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). On the other hand, patients did not wish to become a burden for caregivers, and this influenced their decisions regarding whether to remain at home (Turner & Flemming, Reference Turner and Flemming2019). Maintaining personal autonomy was particularly important for members of marginalized populations such as lesbian and gay older adults, who expressed concerns about discrimination, hostility, and potential elder abuse (Waling et al., Reference Waling, Lyons, Alba, Minichiello, Barrett and Hughes2019).

In many instances, having to advocate strongly for their loved one’s interests may have exacerbated the emotional distress experienced by caregivers (Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). In addition, family caregiver disagreements around decision making could add another layer to the emotional distress experienced by families of persons aging and dying at home (Wilson & Birch, Reference Wilson and Birch2017; Woodman et al., Reference Woodman, Baillie and Sivell2015).

Information and resources. Many patients aging and dying at home and their caregivers felt lost, and they were not always aware of the supportive resources available to them (Bainbridge & Seow, Reference Bainbridge and Seow2018; Dionne-Odom et al., Reference Dionne-Odom, Applebaum, Ornstein, Azuero, Warren and Taylor2017; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Morris et al., Reference Morris, King, Turner and Payne2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). General information needs (Wilson & Birch, Reference Wilson and Birch2017) and equipment retrieval and instruction in the home (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017), as well as answers to questions related to legal proceedings and finances (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Sixsmith et al., Reference Sixsmith, Fang, Woolrych, Canham, Battersby, Ren, Hankivsky and Jordan-Zachery2019; Wilson & Birch, Reference Wilson and Birch2017) were broadly highlighted as neglected aspects of care, adding to the burden of suffering and caregiving. DiGiacomo et al. (Reference DiGiacomo, Davidson, Byles and Nolan2013) reported that the loss of financial resources had an impact on the physical and mental well-being of widows, consequently having a negative impact on bereavement.

Remaining at home required support with housework, physical care, and navigating various systems. A lack of support in these areas negatively affected patients’ and caregivers’ ability to cope, and caused distress (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Morris et al., Reference Morris, King, Turner and Payne2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). Some caregivers, however, had difficulty accepting help out of a sense of personal responsibility to their dying loved one, and occasionally felt judged as inadequate by direct observations from paid health care providers (Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014, 2016; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017). Persons aging and dying at home reported choosing to manage without help for many reasons, including the fear of losing autonomy, confidence, and personhood (Nicholson et al., Reference Nicholson, Meyer, Flatley and Holman2013; Turner & Flemming, Reference Turner and Flemming2019).

The meaning of home. An additional challenge was the need to change the overall home environment when the decision was made to care for a loved one at home. Home was described as more than a physical space in some articles; it was viewed as a site of intimate personal and socio-emotional relationships (Milligan et al., Reference Milligan, Turner, Blake, Brearley, Seamark and Thomas2016; Morris et al., Reference Morris, King, Turner and Payne2015). Caregivers reported that the home environment changed negatively as unfamiliar items such as commodes and lifts became part of their life (Morris et al., Reference Morris, King, Turner and Payne2015). There was a loss of privacy expressed by caregivers, and a feeling that their personal space shrank (Morris et al., Reference Morris, King, Turner and Payne2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). Caregivers’ relationship with their home could change again after the death of their loved ones. Many people avoided some parts of the home or felt the need to redecorate to cope with the absence of the deceased (Milligan et al., Reference Milligan, Turner, Blake, Brearley, Seamark and Thomas2016; Morris et al., Reference Morris, King, Turner and Payne2015). DiGiacomo et al. (Reference DiGiacomo, Davidson, Byles and Nolan2013) pointed out that the death of a husband could directly affect the widow’s living arrangement (needing to move, for example) causing stress, anxiety, and depression.

Lack of attention to the whole person

Symptom management. Although the review’s focus was on the psychosocial aspects of care, much of the reviewed literature emphasized that the need to address physical symptoms of patients and caregivers was directly related to supporting the psychosocial aspects of aging and dying in place. Difficulties with managing patients’ symptoms were overwhelming for caregivers (Phongtankuel et al., Reference Phongtankuel, Scherban, Reid, Finley, Martin and Dennis2016; Woodman et al., Reference Woodman, Baillie and Sivell2015), and discomfort in dealing with medications and administering opioids was particularly challenging (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Morris et al., Reference Morris, King, Turner and Payne2015)

Psychological support. In general, the challenge of managing crises at home was a common reason for emergency department admissions and hospitalizations, as caregivers felt the emotional burden of providing care in these situations (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Gomes et al., Reference Gomes, Calanzani, Koffman and Higginson2015; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Phongtankuel et al., Reference Phongtankuel, Scherban, Reid, Finley, Martin and Dennis2016; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Wilson & Birch, Reference Wilson and Birch2017). Although psychosocial distress was commonly reported and may have required mental health professionals to support caregivers (Kobayakawa et al., Reference Kobayakawa, Okamura, Yamagishi, Morita, Kawagoe and Shimizu2016), this support was not always provided (Perner, Köhler, Brähler, & Götze, Reference Perner, Köhler, Brähler and Götze2012).

Having a specific point of contact for assistance, especially during times of crisis, provided reassurance while remaining at home; however, having someone to turn to was not always a reality (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Gomes et al., Reference Gomes, Calanzani, Koffman and Higginson2015; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018). Moreover, a lack of supports during times of transition, such as from hospice to home, was particularly detrimental to caregivers’ ability to cope, and took away from continuity of care (Bainbridge & Seow, Reference Bainbridge and Seow2018; Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hutchinson & Van Wissen, Reference Hutchinson and Van Wissen2017; Jack et al., Reference Jack, Mitchell, Cope and O’Brien2016; Phongtankuel et al., Reference Phongtankuel, Scherban, Reid, Finley, Martin and Dennis2016; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Wilson & Birch, Reference Wilson and Birch2017; Woodman et al., Reference Woodman, Baillie and Sivell2015).

Spiritual support. Spiritual suffering, accompanied by a loss of confidence and feelings of guilt, was relatively common for patients (Vassal et al., Reference Vassal, Le Coz, Hervé, Matillon and Chapuis2011). Support to maintain spiritual well-being, however, was not always available (Bainbridge & Seow, Reference Bainbridge and Seow2018; Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Morris et al., Reference Morris, King, Turner and Payne2015; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). Acknowledging dread and being supported through fear was a critical issue mentioned in the literature. Bainbridge and Seow (Reference Bainbridge and Seow2018) found that a large number of close to 400 patients receiving end-of-life care rated satisfaction with spiritual support lower than satisfaction with other forms of support, independent of care setting.

Lack of collaborative and trusting relationships

Communication. Caregivers often felt unsupported, overlooked, and let down by health care providers when caring for people at home (Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Woodman et al., Reference Woodman, Baillie and Sivell2015). Communication was particularly linked to the ability to age and die in place, and a lack thereof, negatively impacted the psychosocial well-being of patients and caregivers alike. Both groups highlighted poor communication with health care providers, which was worsened, in many instances, by a lack of empathy, avoidance of difficult conversations, and professionals failing to acknowledge patients’ and families’ preferences (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Morris et al., Reference Morris, King, Turner and Payne2015; Perner et al., Reference Perner, Köhler, Brähler and Götze2012; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Wilson & Birch, Reference Wilson and Birch2017). This posed a major barrier to continuity of care and effective coping during the end-of-life process (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015; Wilson & Birch, Reference Wilson and Birch2017).

Rapport. Lack of rapport with the at-home care team negatively affected the ability of patients and caregivers to form trusting relationships (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Kobayakawa et al., Reference Kobayakawa, Okamura, Yamagishi, Morita, Kawagoe and Shimizu2016; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Morris et al., Reference Morris, King, Turner and Payne2015; Perner et al., Reference Perner, Köhler, Brähler and Götze2012). Health care providers’ attention to cultural and religious differences was also a gap in various situations, complicated by language barriers or needs related to faith-specific practices, for example (Morris et al., Reference Morris, King, Turner and Payne2015; Sixsmith et al., Reference Sixsmith, Fang, Woolrych, Canham, Battersby, Ren, Hankivsky and Jordan-Zachery2019; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015).

Death literacy. Lack of broad discussions regarding death, dying, and advance care planning, commonly addressed as “death literacy”, was considered a gap (Bainbridge & Seow, Reference Bainbridge and Seow2018; Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Gomes et al., Reference Gomes, Calanzani, Koffman and Higginson2015; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Wilson & Birch, Reference Wilson and Birch2017), as was support in decision making (Ewing & Grande, Reference Ewing and Grande2012; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017; Woodman et al., Reference Woodman, Baillie and Sivell2015). That, in turn, had an impact on patients’ and caregivers’ lack of understanding about illness progression and often led to difficulties when discussing life expectancy, which caused additional worry and distress to caregivers (Ewing & Grande, Reference Ewing and Grande2012; Hutchinson & Van Wissen, Reference Hutchinson and Van Wissen2017; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017). Preparing for the future was of utmost importance for both caregivers and patients (Fukui et al., Reference Fukui, Fujita, Tsujimura, Sumikawa and Hayashi2011; Hatano et al., Reference Hatano, Aoyama, Morita, Yamaguchi, Maeda and Kizawa2017; Hudson et al., Reference Hudson, Remedios, Zordan, Thomas, Clifton and Crewdson2012; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015):

Facilitating caregiving at home

Community resources. Maintaining social networks was very important for aging persons and caregivers alike, and these networks included not only family and friends but also community groups (Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Mills et al., Reference Mills, Rosenberg and McInerney2015; Sixsmith et al., Reference Sixsmith, Fang, Woolrych, Canham, Battersby, Ren, Hankivsky and Jordan-Zachery2019; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). Their support went beyond emotional support for caregivers through connection and empowerment including, in many cases, practical support such as assistance with financial planning and navigation (Mills et al., Reference Mills, Rosenberg and McInerney2015). DiGiacomo et al. (Reference DiGiacomo, Davidson, Byles and Nolan2013), however, pointed out that social support is not a one-size-fits-all construct, and satisfaction with its availability may vary depending on individuals’ unique needs and contexts.

Empowering opportunities for social connection offered the potential for meaning making among patients and caregivers or between caregivers (Mills et al., Reference Mills, Rosenberg and McInerney2015; Nicholson et al., Reference Nicholson, Meyer, Flatley and Holman2013; Totman et al., Reference Totman, Pistrang, Smith, Hennessey and Martin2015). Consistent, reliable social networking promoted connectedness and facilitated staying at home at the end of life (Lum et al., Reference Lum, Lou, Chen, Wong, Luo and Tong2016; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Woodman et al., Reference Woodman, Baillie and Sivell2015). Community resources focused on grief and bereavement represented an option to address anticipatory grief (Mills et al., Reference Mills, Rosenberg and McInerney2015). Further, bereavement support groups and interventions in the community may positively influence bereavement outcomes (DiGiacomo et al., Reference DiGiacomo, Davidson, Byles and Nolan2013; Gauthier & Gagliese, Reference Gauthier and Gagliese2012). Finally, public education initiatives focused on death and dying, particularly advance care planning, could prevent transition problems between care settings (Wilson & Birch, Reference Wilson and Birch2017).

Care at home. The presence of high-quality home care was a major facilitator of aging and dying in place, whereas poor quality of home care or inappropriate home environments were detrimental (Turner & Flemming, Reference Turner and Flemming2019). Care at home was provided mostly by nurses and health care support workers who may or may not be connected to a hospice. Establishing close collaboration among health care professionals, caregivers, and patients early in their trajectory was reported to be essential (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019). Trusting relationships with formal support networks based on reciprocal empathy and maintaining normality were seen as crucial. Such relationships had a positive impact on patients’ emotions and on caregivers’ ability to cope with their role (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hudson et al., Reference Hudson, Trauer, Kelly, O’Connor, Thomas and Summers2013; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014; Sims-Gould & Martin-Matthews, Reference Sims-Gould and Martin-Matthews2010; Woodman et al., Reference Woodman, Baillie and Sivell2015).

Active general practitioner (GP) engagement in end-of-life care was seen as important in supporting the physical and mental well-being of the patient with whom they had a long-standing, trusting relationship. Home care teams also valued GPs’ long-term knowledge of the patients’ health, which enhanced continuity of care (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Gomes et al., Reference Gomes, Calanzani, Koffman and Higginson2015; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020). Mogan et al. (Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018) highlighted that, “no matter the model of care provided, regular contact with a healthcare professional, and not necessarily a palliative care specialist, might play an important role in end-of-life care at home for people with dementia” (p. 1049). Care at home could be enhanced by professionals conducting systematic needs assessments with caregivers (Hammond & Baxter, Reference Hammond, Baxter, Holtslander, Peacock and Bally2019 ^; Hudson et al., Reference Hudson, Remedios, Zordan, Thomas, Clifton and Crewdson2012 ^; Wilson & Birch, Reference Wilson and Birch2017). These assessments should include psychological and physical health, social, spiritual, cultural, financial, and practical elements (Aoun, Breen, et al., Reference Aoun, Breen, White, Rumbold and Kellehear2018; Hudson et al., Reference Hudson, Remedios, Zordan, Thomas, Clifton and Crewdson2012; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014). Aoun, Breen, et al. (Reference Aoun, Breen, White, Rumbold and Kellehear2018) found that bereaved caregivers who received a nursing intervention that assessed needs before the death reported benefits. They perceived their support needs as being better met and experienced less strain than the control group who did not receive equivalent interventions.

Caregivers pointed out that proactive equipment training provided by the health care team would help them support their loved one’s desire to die at home (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017). They reported feeling reassured particularly when they received validation from formal caregivers related to the task that they were doing (Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014).

Hospice care. Hospice at home, hospice day care, or community-based hospice programs were highlighted as successful facilitators of aging and dying in place (Bainbridge & Seow, Reference Bainbridge and Seow2018; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014, 2016; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Woodman et al., Reference Woodman, Baillie and Sivell2015). Hospice clinical staff teams were recognized as highly trained to support not only the medical needs, but also the psychosocial needs of patients and caregivers (Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014, 2016). Features such as the emotional and practical support to caregivers offered by night-sitting services (e.g., reassurance and peace of mind that patients were being looked after) were reported to be integral supports for caregivers (Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014).

The support of a palliative care team for caregivers supporting their loved ones at home gave them the ability to continue with normal life as much as possible (Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014, 2016; Morris et al., Reference Morris, King, Turner and Payne2015). Hospice at home helped to relieve the strain on caregivers, gave people time to balance their own lives with new duties, and had positive effects on bereaved caregivers’ mental health (Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014, 2016; Wright et al., Reference Wright, Keating, Balboni, Matulonis, Block and Prigerson2010).

Direct telephone lines for support (Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018) as well as crisis intervention teams (Danielsen et al., Reference Danielsen, Sand, Rosland and Førland2018; Mogan et al., Reference Mogan, Lloyd-Williams, Harrison Dening and Dowrick2018; Phongtankuel et al., Reference Phongtankuel, Scherban, Reid, Finley, Martin and Dennis2016) were opportunities identified for future exploration. Caregivers pointed out that initiation of respite care or increased hours of respite services could also better support their caregiving role by allowing them to address their own need for rest (Ewing et al., Reference Ewing, Brundle, Payne and Grande2013; Ewing & Grande, Reference Ewing and Grande2012; Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019; Jack et al., Reference Jack, O’Brien, Scrutton, Baldry and Groves2014; Knighting et al., Reference Knighting, O’Brien, Roe, Gandy, Lloyd‐Williams and Nolan2015; Robinson et al., Reference Robinson, Bottorff, McFee, Bissell and Fyles2017). Anticipatory rather than reactive care was referenced as an opportunity to prevent distress and reduce hospital admissions (Hashem et al., Reference Hashem, Brigden, Wilson and Butler2020; Hughes et al., Reference Hughes, Noyes, Eckley and Pritchard2019).

Figure 2 summarizes the challenges and opportunities we identified.

Figure 2.

Summary of Semantic Analysis Results.