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. 2025 Feb 4;24:34. doi: 10.1186/s12904-025-01650-4

Social support sources for people with palliative care needs at home: a scoping review

Trudy Schutter 1,✉, Ian Koper 1, Kris Vissers 2, Jeroen Hasselaar 1
PMCID: PMC11792421  PMID: 39905411

Abstract

Background

Recent literature suggests an increase in attention for the social dimension of palliative care. However, who provides social support to patients with palliative care needs at home and their relatives is often unclear, and insight in the role of the community and professionals with a main focus on social support, not being health care professionals, is lacking in this respect. Therefore, in this study we explore social support for people with palliative care needs residing at home and their relatives, provided by the community and professionals from the welfare domain, and want to understand when social support is experienced as sufficient by the recipient.

Methods

A scoping review was conducted to search for literature on social support by the community and professionals from the welfare domain to people with palliative care needs at home, using the databases PubMed and Web of Sciences for studies published between January 1, 2007, and June 1, 2023.

Results

Social support to people at home with palliative care needs and their relatives is mainly provided by informal caregivers, namely family, friends and neighbours. These people providing social support is perceived as normal, natural and is expected by the recipient. Social support by the wider community and by professionals from the welfare domain can enhance, complement and/or substitute this support. Within the 27 included articles, nine studies provide results of social support interventions, which show that volunteer or professional services aimed at enhancing and mobilizing the informal social network of the patient are an important way of building supportive and sustainable social support networks.

Conclusions

Community sources and professionals with a main focus on social support such as social workers can enhance, complement and substitute social support provided by the informal network, if needed. Structured approaches can improve recognition of unmet social problems and needs of people with palliative care needs at home.

Keywords: Palliative Care, Social Support, Community support, Community resources, Social Work, Scoping review

Background

Due to the ageing population and a growing number of people with chronic illnesses, both the number of dying people and the need for palliative care will increase [1]. Many people with an advanced disease or living with frailty could benefit from palliative care, even more at the end of their life. Palliative care is focused on improving quality of life, and prevention and relief of suffering during the last stage of life [2]. Addressing suffering goes beyond the relief of physical symptoms: palliative care also takes psychosocial and spiritual problems into account. Patients report this holistic aspect of care as important for their quality of life [3]. “Health promotion approaches” as described in a “public health palliative care approach”1 focus on the role of the community in end-of-life care and demedicalisation of death. This approach emphasizes that serious illness, suffering, death, dying and bereavement are not only medical issues, under the remit of professionals, but also social experiences, considered as a normal part of life, requiring an adequate social response [4, 6].

Living with an incurable illness causes suffering, this suffering can be alleviated or made worse by the social environment of an individual [3, 7, 8]. Physical symptoms such as fatigue and pain are a major source of suffering and affect the person’s daily life and ability to perform activities; physical deterioration is often paralleled by increasing social restrictions [7, 8]. An incurable illness often influences family dynamics; ideally, family members and friends will take a more caring role as (unpaid) informal caregiver, in addition to their own difficulties in accepting the whole situation [7–9]. As informal caregiver, they may be in need of instrumental or informational support to be able to provide appropriate informal care or support to the patient, or in need for emotional support aimed at their own wellbeing, including respite care and bereavement support [10, 11]. An incurable disease, long-term caregiving, grief and bereavement can thus cause social support needs for both patients and informal caregivers.

Social support is a resource gained through interaction with others and is characterized by interpersonal sensitivity, kindness and empathy and is associated with a better quality of life for people who are incurably ill [12–14]. Individual needs for social support are often divided into emotional and tangible or instrumental needs. Emotional needs are related to stressors such as sadness, frustration, loneliness, anxiety and uncertainty; emotional support can be defined as an expression of comfort and caring [12, 15]. Instrumental needs are associated with the lack of tangible goods, transportation and financial support; instrumental support is in-kind aid, money, labour, time and a modifying environment [12, 16]. More extensive definitions of social support needs are extended by informational needs, the need for social companionship, belonging to a group or getting appraisal [15–17]. Social support can be measured in numerous ways, for example by measuring the aforementioned functions of social support or by measuring the extent of social integration or isolation [15, 16].

In this study we are interested in social support by the community and by professionals from the welfare domain to people with palliative care needs at home, including bereavement support needs (see the model presented by Lynn and Adamson [18]), and aim to synthesize this knowledge in a literature overview. We define the community as lay persons within the community, volunteers and third sector or community sector organisations. We define professionals from the welfare domain as professionals with a main focus on social support; this mainly concerns social workers but also related professions such as social care workers, community workers and volunteer coordinators. At the start of our search did we not demarcate this term strictly to not miss important findings, during the search the demarcation with health care professionals became more clear. We define health care professionals as professionals with a main focus on medical needs, such as physicians, nurses, physical therapists and occupational therapists; during the search, psychiatrists and psychologists were added to this group. We recognize the importance of comfort and caring by these health care professionals, but focus on people in the community and professionals from the welfare domain to understand their contribution. When we refer to social workers or social care workers in our article, we allude to the broader group of welfare domain professionals.

Culture encompasses (social) norms and expectations and informs our “beliefs, values, and assumptions about disease, illness, healthcare, dying, and death” [19], therefore the socio-cultural context in which social support in provided is relevant [19, 20]. People in collectivistic cultures tend to be part of strong cohesive groups, having closer and more supportive networks, while in individualistic cultures, these supportive networks are not self-evident [21]. Instead, people in individualistic cultures are often part of more flexible networks [21]. In this review, we are particularly interested in studies on social support provision in Western societies like the Netherlands, that tend to be more individualistic, as opposed to collectivistic, in which people can often rely on an extensive formal health and welfare system. Although there are important examples for the role of the community in the support of people with palliative care needs in collective cultures such as the Kerala model [22], these are outside the scope of this review. Also outside the scope of this review are publications on public health palliative care that are solely about raising awareness and educating society about serious illness, death, dying and bereavement, although these initiatives can strengthen community capacity for the provision of social support.

Our study is guided by three consecutive research questions: What are community and welfare domain sources of social support in home palliative care? What are characteristics of this social support? When is this social support experienced as sufficient by the recipient? Insight into these social support sources will help understand how social support needs of a growing group of people with palliative care needs can be met.

Methods

Review design

We conducted a scoping review to collect and describe empirical research on social support in home palliative care provided by the community and professionals from the welfare domain (as opposed to the health care domain). We followed the methodological framework on scoping reviews from Arksey & O’Malley [23] combined with the enhancements of Levac et al., as presented by Colquhoun et al. [24]. Due to the explorative character of our research, we used a scoping review methodology, rather than a systematic review, as it was better suited to clarifying key concepts and identifying available evidence [25]. No review protocol for this study is available.

Search strategy

A systematic search was performed in June 2023 using the databases PubMed and Web of Science for studies published between January 1, 2007, and June 1, 2023. We choose these two databases to explore and understand what social support, by the community and professionals from the welfare domain, in home palliative care comprises, rather than to strive for completeness and capture every research in every database. Only sources of evidence published in English were considered for inclusion.

The search strategy was collaboratively developed by all authors, with search terms thoroughly discussed and refined to maintain alignment with the scoping review’s aim. The search string used in Web of Science was: TS=((“social support” OR “informal support” OR “bereavement support” OR “community support” OR “community engagement” OR “community network*” OR “social care” OR “informal care” OR “bereavement care” OR “public health”) AND palliative); ≥ 2007. The search string used in PubMed was: ((=((“social support“[Title/Abstract] OR “informal support“[Title/Abstract] OR “bereavement support” OR “community support“[Title/Abstract] OR “community engagement“[Title/Abstract] OR “community network*“[Title/Abstract] OR “social care“[Title/Abstract] OR “informal care“[Title/Abstract] OR “bereavement care“[Title/Abstract] OR “public health“[Title/Abstract])) AND (palliative[Title/Abstract])) AND ((“2007/01/01“[Date - Publication] : “2023/06/01“[Date - Publication]))

Eligibility criteria

Publications were eligible for inclusion if the following criteria were met:

  • Written in English.

  • Provided information about the content of provided social support.

  • The social support under study:

    • Was aimed at adult people with palliative care needs residing at home and/or aimed at their (bereaved) relatives/family caregivers.
    • Was provided by the community or professionals from the welfare domain, i.e. professionals with a main focus on social support such as social workers and related professions.

  • Performed in a Western individualistic society: Australia, Canada, New-Zealand, the US, Western-Europe.

  • Presented results of empirical studies.

Study selection

A total of 4,543 articles were found in the two databases. These articles were imported into the electronic system Endnote. With duplicates removed, 3,315 unique articles remained. Two reviewers (TS and IK) independently both assessed all titles and abstracts against the inclusion criteria. Where eligibility was unclear based on title and abstract, the full text article was perused and discussed. In case of disagreement or doubt, articles were discussed with the third reviewer (JH) using an Excel overview with aggregated data. Articles were excluded after discussion. For example because the focus of the article was on the intensity of informal caregiving, but not content-related on social support; because it described a project on social support but presented no empirical results; because it was about formal health care solely; or because it was about patients in another setting than the home-setting. We did not exclude publications in which chaplains provided support in advance, however, after discussion we did not include any articles to which this applied, because they did not meet all eligibility criteria. We discussed studies on social support provided by hospices. In the United Kingdom and the Republic of Ireland, most hospices are independent charities working within and alongside the local health and social care system [26]. Only a minority of the offered services involve staying overnight and often activities are organized by volunteers, carers and patients. We have therefore concluded to not exclude in advance studies in which hospices provide social support. This resulted in a total of 27 included articles, see flowchart (Fig. 1).

Fig. 1.

Fig. 1

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Flowchart study selection

Data synthesis and analysis

Data extraction of all data relevant to inform our review was done using a charting table. This table included: author/year, objective(s) of the paper, information on participants, data in relation to the concept, information on the intervention if applicable, key findings and any remarks about the relation of these findings to the practice of palliative care and support in the Netherlands. After inclusion, this aggregated data was examined and grouped into categories based on similarities or differences in researched themes and results.

Results

Most of the included articles reported on qualitative studies. The main methods for data collection were interviews and focus groups, mainly with seriously ill patients, (bereaved) relatives, informal carers and/or professionals from a range of palliative care services. An overview of all included articles can be found in Table 1. Of the included articles, nine were executed in Australia, eight in the United Kingdom (UK); the remaining articles reported on studies performed in Austria, Belgium, Canada, Ireland, New Zealand (NZ), Spain, Sweden, Switzerland and the United States of America (US).

Table 1.

Overview of included articles in scoping review on social support in home palliative care

Author(s) Year Country of origin Aim Participants Metho-dology Intervention (if applicable) Key findings that relate to the review question
Aoun, Breen, White, Rumbold and Kellehear [36] 2018 Australia To determine who provides bereavement support in the community and what sources are perceived to be the most or least helpful Bereaved relatives (n = 678) Survey NA Much of the social support for those recently bereaved is provided by a range of people already involved in their everyday lives
Aoun, Richmond, Gunton, Noonan, Abel and Rumbold [37] 2022 Australia To measure the effect of the Compassionate Communities Connectors intervention on social connectedness by the mMOS-SS pre- and post-intervention Trained volunteers, patients with advanced illnesses (n = 43) Mixed methods The intervention: volunteers attended a two-day training course delivered by content experts and subsequent enhanced supportive and sustainable networks around patients and their families. The programme was effective in improving social connectedness, reducing social isolation and increasing supportive networks by building community capacity
Aoun, Rosenberg, Richmond and Rumbold [32] 2023 Australia To explore the experiences and views of both patients and their family carers who received support from the Compassionate Communities Connectors programme and of their referring health care providers Patients with advanced illnesses/family caregivers, professionals (n = 40) Interviews The intervention: volunteers attended a two-day training course delivered by content experts and subsequent enhanced supportive and sustainable networks around patients and their families The programme was effective in improving social connectedness; the commitment of the trained volunteer was experienced as trustworthy, helped taking the pressure of families and was filling a gap in service provision
Bellamy, Gott, Waterworth, McLean and Kerse [38] 2014 NZ To explore older people’s views, experiences and sources of bereavement support following the death of a spouse, family member or other significant individual Bereaved relatives and friends (n = 28) Interviews NA Existing community-based organisations are an important source of bereavement support; need for formal bereavement support services is questioned by a majority of participants
Beresford, Croft and Adshead 2008 [39] 2008 UK To explore service users’ views and experiences of specialist palliative care social work Patients with life-limiting illnesses and bereaved people (n = 111) Interviews NA For participants, human qualities as warmth, empathy, respect and listening, and the notion of friendship are pivotal in their relation with the social worker
Bradley, Dowrick and Lloyd-Williams [26] 2022 UK, Ireland To gain an overview of all hospice day services that facilitated social support for adults, outside of their homes Hospices (n = 103) Survey NA Hospice activity in facilitating social support to patients is diverse and evolving
Gott, Wiles, Moeke-Maxwell, Black, Williams, Kerse et al. [40] 2018 NZ To explore the role of community at the end of life for people dying in advanced age from the perspective of their bereaved family caregivers Bereaved relatives of patients who died at > 80 years of age (n = 58) Interviews NA Social networks and community engagement of older persons in the end-of-life period are often reduced; carers felt limited community support
Grindrod & Rumbold [33] 2018 Australia To examine carers’ experiences of home-based dying, the networks that supported them during caregiving, and broader community networks with the potential to extend care Local leaders, community development workers, carers (n = 20, interviews) Interviews, Focus groups NA Social norms, e.g. reluctance of carers to ask for and accept help from family, friends and community networks, can hinder development of community capacity for providing end of life care
Hansen, Cartwright and Craig [41] 2012 US To describe the perspectives of primary family caregivers regarding experiences with formal and informal care at the end of life for dying older adults in one rural, agricultural county Bereaved relatives of patients who died 60–97 years of age (n = 23) Interviews NA A rural setting influences the experience with formal and informal care at the end of life; neighbours, friends, and other volunteers often offer social support, while formal services can be restricted
Horsfall, Leonard, Noonan and Rosenberg [42] 2013 Australia To develop an understanding of how formal and informal carers work together when care is being provided in a dying person’s home Professionals and volunteers from a range of EOL care services (n = 88) Focus groups NA Formal providers are aware of the vital role of informal networks but do little to establish, support or maintain these
Horsfall [43] 2018 Australia To explore in-home caring networks to understand if and how network centred care supports carers of the dying while developing a whole of community approach Informal caregivers, professionals and volunteers from a range of EOL care services and community members (n = 301) Interviews, Focus groups NA Carers of people who die at home can be supported by collective community caregiving; while caring networks are essential they are not widely supported by service providers
Kirby, Kenny, Broom, MacArtney and Good [44] 2018 Australia To examine the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support Bereaved family caregivers of patients who died of cancer (n = 15) Interviews NA Sociocultural constructions, shared social assumptions and stereotypes about grieving influence the use of formal bereavement support services; people might be in need of more practical than emotional support
Koffman, Morgan, Edmonds, Speck and Higginson [45] 2012 UK To explore social support networks and their meaning among Black Caribbean and White British patients living with advanced cancer Patients with advanced cancer (n = 45) Interviews NA Cultural background influences the composition of informal social support networks
Lewis, DiGiacomo, Currow and Davidson [46] 2014 Australia To identify the nature of individual, community and civic networks and relations that define the context of care for lower socioeconomic populations at the end of life Patients and informal caregivers (n = 22) Interviews NA Individual and community networks are mainly inadequate to meet care needs of lower socioeconomic populations at the end of life
Librada-Flores, Pérez-Solano Vázquez, Lucas-Días, Rodríguez Álvarez-Ossoria, Herrera-Molina, Nabal-Vicuna et al. [34] 2023 Spain To evaluate interventions of the Sevilla Contigo Compassionate City program on health in a population of people with advanced illness and at the end of life Patients with advanced illness (n = 83) Mixed methods Intervention: support by a community promoter focussing on identifying unmet social needs and activating resources to develop social networks Crucial in the intervention is the designated professional who was responsible for mobilizing resources and networks around patients with chronic illnesses or at the end of life and their caregivers; this was done by aligning social and healthcare services and by strengthening the informal network
Marsh, Gartrell, Egg, Nolan and Cross [35] 2017 Australia To explore how a community garden might function as a place of end-of-life and bereavement support Project participants and members project team (n = 14) Interviews, Observations, Focus groups Intervention: within a participatory action research framework, three community events were organized: an information evening for service providers and community members; four “weaving-conversation” sessions; and a one-day workshop to establish a quiet reflective space within the garden Community gardens can function as space where social support is available for people with life-limiting illness and during grief and bereavement
McGhee, Dempster and Graham-Wisener [47] 2022 UK To examine the lived experience of the presence of companion animals among community-dwelling adults with advanced cancer Patients with advanced cancer (n = 6) Interviews NA The unique connection with a companion animal provides emotional, practical, and social support to patients with advanced cancer
Pesut, Duggleby, Warner, Fassbender, Antifeau, Hooper et al. [29] 2017 Canada To evaluate a one-year pilot (Nav-CARE) in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in the community Volunteers, nurse-navigator, patients and relatives (n = 26) Mixed methods Intervention: Volunteers received a three-day navigation training from a nurse navigator and then conducted in-home visits over a year, with patients with advanced chronic illness. Volunteers were trained to identify day-to-day challenges of patients and assist them with connecting to persons and other community recourses Volunteers providing supportive navigation services during the early phase of palliative care can help making life more liveable and create a surrogate safety net; volunteers felt well-prepared and found their role satisfying and meaningful; patients and their families rated the services as highly important
Pesut, Dugglebly, Warner, Ghosh, Bruce, Dunlop et al. [30] 2022 Canada To evaluate feasibility, acceptability, sustainability, and impact of a scale-out implementation of a volunteer navigation intervention called Nav-CARE Key informants, patients and family caregivers, volunteers (n = 169) Mixed methods See above [29] Clients, families and volunteers reported positively about the intervention; recruitment of clients was the most significant barrier to implementation
Pleschberger & Wosko, 2017 [48] 2017 Austria To gain insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care Former non-kin caregivers of older people (75+) living alone (n = 15) Interviews NA Respectful and supportive relations between professional carers and non-kin-carers is vital to keep the latter involved in support to older people living in single households that are towards the end of life
Poppe, Iseli, Verwey and Wangmo [49] 2022 Switserland To explore the themes of bereavement and support experience of informal caregivers of persons with ALS Bereaved informal caregivers of patients with ALS and professionals (n = 25) Interviews NA Bereaved informal caregivers often have to search for support themselves, information about this is not provided; continued support by a healthcare professional after bereavement and/or peer support can be valuable; informal caregivers missed support relating to administrative work
Quinn, Richards and Gott [50] 2023 UK To present data which reveal how some health and social care professionals view home dying for people experiencing financial hardship and deprivation Health and social care professionals (n = 12) Interviews NA For health care professionals, financial hardship at the end of life can be challenging to recognize and discuss; increased partnership with social care professionals could improve patient experiences and promote equity in palliative care
Roper, Donnellan, Hanratty and Bennett [51] 2019 UK To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers Bereaved caregivers (n = 44) Interviews NA Participant benefited from the support of the person they were caring for, in particular emotional support and navigating the system together; in general, carers wanted more social support than they received from family
Ryan, Howell, Jones and Hardy [27] 2008 UK To evaluate the Macmillan Carers Project (MCP) set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer Caregivers, project workers, professionals (n = 32) Interviews Intervention: MCP workers with a non-medical social work background provided social support to carers of patients with lung cancer The project is valued by both carers and professionals in filling a gap in social care; support included information, benefits advice, liaison, co-coordinating appointments, emotional support, assistance in accessing aids/equipment and bereavement counselling
Sjolander & Ahlstrom, 2012 [52] 2012 Sweden To explore the meaning of social support networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer Relatives of recently diagnosed cancer patients (n = 17) Interviews NA Carers are in need of social support by their informal network to handle their situation both emotionally and practically and to feel confirmed as a person in this new situation of having a close relative with cancer; support from people who themselves had experienced that situation was invaluable
Vanderstichelen, Cohen, Van Wesemael, Deliens and Chambaere [53] 2018 Belgium To describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people Volunteers, nurses, psychologist and family physicians (n = 79) Interviews, Focus groups NA Volunteers are often approachable for and focused on building a relationship with the dying person, and provide social support; they can fulfil a liaison role between the professional and family domain
Walshe, Dodd, Hill, Ockenden, Payne and Preston [28] 2016 UK To determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life Patients anticipated to be in last year of life (n = 179) Controlled Randomised trial Intervention: trained volunteers were matched by a coordinator and provided support to people anticipated to be in their last year of life. Support was tailored to the needs of the patient, including befriending, practical support and signposting Clinicians can confidently refer to volunteer services at the end of life; future research should focus on ‘dose’ to maximise likely impact
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Nine of the included articles presented results of a social support intervention. All but one [27] of these have a link with a health promotion approach to palliative care. The ELSA-study (End-of-Life Social Action Study) [28], Nav-CARE (Navigation-Connecting, Accessing, Resourcing, and Engaging) [29, 30] and the CoCoCo-model (Compassionate Communities Connectors model) [31, 32] present and evaluate models in which volunteers are trained to provide social support to patients and, in the latter two, enhance the social support network of patients. The Macmillan Carers project [27] studies a model in which social support is delivered by social workers, to carers of patients with lung cancer. The HELP-project (Healthy End of Life Project) [33] and the Todos Contigo (“All with you”) method [34] present the design and results of compassionate community programs aimed at increasing community awareness and capacity. Walking each other home [35] is a participatory action research on end-of-life care in a community garden.

Social support by existing relationships

The most important sources of social support for patients, family caregivers and bereaved relatives, from their perspective, are family, friends and neighbours [36, 38, 40, 42, 45]. Social support by trained volunteers and professionals supplement this support. Residing in nature or the presence of a companion animal can also be experienced as a form of social support, and function as a buffer against the negative effects of experiencing a life-threating illness or bereavement [35, 47]. Support from relatives, especially support from spouse and children, is expected by the recipient and seen as a normal part of a long lasting loving relationship [45]. When relatives are unavailable, the role of non-kin carers becomes more apparent. Friends can be part of the community of place or be less geographically near, based on deeply rooted relationships that have evolved over the years; the support by neighbours often arises and develops gradually and is often not specifically requested or acknowledged [48].

Family caregivers’ social support needs

Relatives of patients at the end of life provide social support to the patient, but often have their own social support needs as well. Relatives are often emotionally affected by the situation of the patient, take on a caregiver role and may have to fulfil other major tasks besides taking care for the patient [52]. Besides the need of emotional and instrumental support, they might desire confirmation by their social network of their new role, e.g. as being a person with a close relative with cancer [52]. Family carers may receive social support from the person they care for, especially emotional support or support in navigating the system together [51]. Family caregivers often see their role as normal part of their relationship and as doing nothing special, nevertheless, they value it when their difficulties are recognized by others, such as their wider family, and are in need of social support themselves regularly [27, 38, 51, 52]. Often, bereaved caregivers receive support from people already involved in their daily life and appreciate support in particular when provided by people who have experienced similar situations [35, 36, 38]. Bereavement support can be of particular importance after an extensive caregiving period, such as with Amyotrophic Lateral Sclerosis [49].

Social support by the wider community

The wider community is a potential provider of social support, but community involvement can be hindered. Organisations such as schools, churches, community groups, disease-specific groups, hobby- and sport clubs, bereavement support groups, the funeral provider, financial or legal support providers et cetera may provide social support and/or have a role in mobilizing and supporting the informal network [36, 42, 45]. However, social networks and communities of interest may wane, caused by migration at older age, limited access to transport, deteriorating health, decreasing mobility and the onset of sensory impairment such as hearing and vison loss [40]. Another barrier to community engagement is active withdrawal from the community by the patient him/herself, caused by shame, concerns about being a burden, not being able to reciprocate the received support and seeing asking or accepting help as socially unacceptable, since dying is often seen as a private matter [33, 40]. Availability of social support by the wider community can be linked with social determinants2 such as social-economic status and geographical living place [41, 46].

Enhancing, complementing and substituting informal social support networks

Beside naturally emerging community support, community involvement can be part of an intervention. Volunteer or professional services aimed at enhancing and mobilizing the informal social network are an important way of building supportive and sustainable networks around patients and their families [32–34, 37, 55]. They are in line with the health promoting approach of public health palliative care and appear to be pivotal in the compassionate community movement. In these approaches, volunteers or designated professionals are trained and partnered with patients, provide social support and/or help them expand their social network. This creates a surrogate safety network that strengthens feelings of connection, reduces feelings of loneliness and may provide the family caregiver with some respite time [29, 30, 32, 37, 53]. Social support by trained volunteers is highly valued by patients and their relatives, although the effect on quality of life might be hard to demonstrate [28–30]. Results of included mixed methods studies and a randomised trial show that statistically significant change for participating patients and their relatives on quality of life, social support and loneliness is hard to reach with social support interventions. None of these included studies showed statistically significant improvement on quality of life, although trends in data or additional qualitative data were in favour of the interventions.

Professional providers of social support

Social support by social (care) workers and related professions may be complementary or substitute to informal social support. Formal providers may have a role in the assessment of social needs and subsequently provide that what is needed [42]. This can be both emotional support and instrumental support such as assistance with housing, transport, finances, equipment or adjustments to the living situation. Pro-active, non-medical, social support can be helpful for both patient and family caregivers and can cause patients to stay at home longer [27]. Recipients of palliative care social work value kindness, available time, informality, continuation of support, the hands-on character, the ordinariness of the relationship and the fact that the support is provided by someone outside of their inner circle, and outside of the care-team [27, 39].

Often, formal providers have a role in identifying the informal support network and help develop it by providing information, training and reassurance [42, 43]. Additionally, formal providers need to coordinate offered volunteer-services by providing support, training and supervision [32, 53]. In the UK, hospices can be an important provider of social support for people with palliative care needs living at home [26]. Social support by UK hospices include palliative day care3, self-management programmes, activity groups, formal support groups, et cetera [26]. These activities may be a reason for patients to leave their house and a possibility to meet others, including peers. In Australia, formal bereavement support services are widely available, but not consulted and used much [36, 44]. This may be related to the general perception that bereavement support is only needed by the socially isolated or that bereavement is considered a private matter, or the believed narrow scope of the service. When it comes to formal bereavement support, people have more tangible and informational needs than emotional needs [44].

Discussion

The community

This review shows that the potential role of the community and professionals from the welfare domain cannot be separated from the support possibilities of family, friends and neighbours. It reveals that there is no hard demarcation line between support from the close informal network and support from the wider community network which includes support by people from for example a religious community, school, hobby- or sport club. This review also reveals that support from the wider community is often a necessity and that it alleviates the workload of the close informal network; it fulfils an important role in mobilizing and supporting the informal network. People in the community deal with serious illness, suffering, death, dying and bereavement as part of daily life; community organizations providing social support can provide space to share experiences for those people. If needed, this can be further complemented by social support provided by professionals such as social (care) workers.

Professionals from the welfare domain

Furthermore, we found that the role of professionals from the welfare domain in the social support of people with palliative care needs at home is limited but important; professionals have a role in enhancing, complementing and substituting the support network of patients and their relatives. This can be done by initiating or guiding community involvement programmes, by providing guidance to people with social support needs themselves, or by facilitating opportunities for peer support.

Social (care) workers are not always involved in the provision of palliative care, though they might complement the multidisciplinary palliative care practice and be a link between the health care domain and the community [56]. Social workers have attention for the social and physical environment of patients and for social determinants that could make patients more vulnerable. Also, social workers are used to adjust to age, gender and cultural and ethnical backgrounds [19, 57]. Their contribution is not always recognised by other (health care) professionals, policymakers and financial institutions, although collaboration between professionals from the healthcare domain and the welfare domain could improve experiences of patients [39, 50]. For example, social workers are often more experienced in recognizing and dealing with financial hardship and deprivation, therefore, their contribution could improve the support of patients at the end of life that are dealing with financial issues.

Sufficient social support

It is hard to present a clear and concise answer to the question of what makes social support for people with palliative care needs at home sufficient and valued by the recipient (our third research question). Social support is deemed sufficient when the recipient experiences it positively and as being enough. Nevertheless, the question remains whether the recipient is always in the position to critically judge the amount and quality of received social support. Especially, this might be the case for structurally vulnerable people, such as people with palliative care needs that are experiencing financial hardship, loneliness, homelessness, severe mental illness, high incidences of substance use and histories of trauma, or are from a minority ethnic group or LGBTQ [58]. Also, the perception of social support could be influenced by low mood or the impossibility to reciprocate support [59]; or someone could withdraw from social contact him/herself in anticipation of death [60, 61]. To answer the question of sufficiency in a clear and concise way, future qualitative or mixed methods studies are necessary, based on methods for measurement and evaluation of the impact of social support (interventions) for people with palliative care needs at home, and sensitive to possible social inequalities.

Equity in social support in palliative care

Since palliative care is aimed at the wellbeing of both patients and their families, it has a task in alleviating suffering through early identification and correct assessment of social problems and needs [2]. Theses assessments are particularly important for patients and families with a high level of unmet social needs and a low network of support; patients and relatives that are structurally vulnerable, regardless the cause; and a growing number of people living in single households or without children that are towards the end of life. Patient (and family) centeredness is important, because it is not one size fits all when it comes to the social dimension of palliative care. Being aware of the pivotal role of the informal network of patients and their families and the potential role of the community in the provision of social support could improve cooperation and subsequently the quality of palliative care [62]. Cooperation between palliative care providers, the community and the welfare domain can help accomplish more equity in social support in palliative care, this requires addressing social determinants of health and better integration of social support services with health care services [63]. We conclude that lay people in the community, third sector organisations and welfare domain professionals such as social (care) workers are indispensable in the social support of a growing group of people with palliative care needs living at home, and that they could function as liaison between informal sources of support (and the daily life of patients) and formal (palliative) care providers. The included articles show that this is not yet an easy and beaten path, however, the included articles on health promoting palliative care interventions provide promising examples in this regard.

Strengths and limitations

This study has a few limitations. The first limitation is our choice to use the term ‘palliative’ in our search string and the selection of databases. It is important to mention here that we deliberately made these choices to emphasize our starting point in palliative care and not for example in sociology. Another limitation is, only studies from western individualistic were included to make results comparable with the situation in The Netherlands. Although a conscious choice, we may have missed important insights from other contexts on the provision of social support to people with palliative care needs. Additionally, important to mention is the high amount of included studies from the UK and Australia; these results may not be translatable one to one to all western societies. For example, the position and role of hospices in the UK differs considerably from that of hospices in the Netherlands; and the population density in Australia and the meaning of the word ‘rural’ contrasts substantially from most Western-European countries4. We consider these differences relevant for interpretation of the findings.

The data gathered through the included studies on social support has limitations. Do people who do not receive sufficient social support from existing informal relationships find their way to the formal support system? Or the other way around, do formal services sufficiently encounter those with a high level of unmet social needs and a low network of support? Or is it plausible that those with knowledge of the formal system and with ongoing access to sources of social support have more access to formal social support sources? In our method we did not specifically focus on support for vulnerable groups but more broadly on the sources of social support sources within the community and welfare domain. This could be studied in more detail.

Finally, although our research question and search strong were broader, we mainly found informal social support sources. This might point to a limitation in our search string, but could also show that in palliative care social support sources are predominantly found in informal care networks surrounding the patient.

The strength of this study is in the chosen approach that explored widely social support to people with palliative care needs at home by the community and professionals from the welfare domain. Furthermore, this review provides insight into the relationship between different social support sources. Additional to our initial search, performed for studies published between January 1, 2007 and June 1, 2023, we have repeated our search string for studies published between June 1, 2023 and November 1, 2024, and scanned these publications. The most important results of this scan can be found in Table 2.

Table 2.

Relevant publications in PubMed and web of Science, published after June 1, 2023

Recent research

After we performed our search and analysed the included articles, several articles have been published on the topic of social support sources for people with palliative care needs at home. Additional to our initial search, we have repeated our search string for records published between June 1, 2023 and November 1, 2024 and identified over 500 unique publications. After having scanned these additional articles, we want to allude to certain publications.

The relevance of dividing social support into emotional and instrumental needs, supplemented with informational needs, the need for social companionship and the need to belong to a group or to get appraisal is shown by both Kasdorf et al. [65] and Quintiens et al. [66].

 • Kasdorf et al. [65] highlight that people in the last year of life and their relatives often have unmet information support needs that affect all other social support needs. They suggest that the availability of a ‘buddy’ might lower the risk of an unwanted inpatient death.

 • Quintiens et al. [66] show that the type of social support needed affects the willingness of people in the community to provide social support to others.

On the crucial role of the informal caregiver in the provision of social support,

 • Tripidoro et al. [67], state that the informal caregiver role “requires better support from society, healthcare teams and family systems” [67]. Also, they show how socio-culture values drive the informal caregiving role and how socio-cultural mandates on caregiving can be reinforced by healthcare providers.

There are publications that continue on the articles analysed in this review:

 • In our review we included an article on the HELP-project in Australia, recently findings of a HELP Ottowa project (Canada) were published by Van Vliet et al. [68].

 • Bradley et al. [59] report on the beneficiary of social support groups in hospice day services;

 • And Hansford et al. [69] conclude in their paper that “local community organizations are well placed to support people at end of life” [69].
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Implications of the findings for further research

Further research is needed to investigate how palliative care clinicians see their role and act accordingly, when it comes to assessing social needs of their patients. Also, collaboration of palliative care clinicians with and referral to professionals from the welfare domain and community sources needs to be investigated in this regard. Additionally, further research is needed to study in more depth the views and possibilities of professionals from the welfare domain in the provision of social support to people with palliative care needs. For example, the (unique) contribution of social workers as a connecting link between the health care domain and the community could be studied in more detail with regard to social support needs of people confronted palliative care needs. Since social workers often support and empower people from lower socio economic backgrounds, those who are homeless, unemployed, experience poverty or are from minority ethnic groups or LGBTQ, it would be of value when these underrepresented groups would be included within these studies. Furthermore, it is also relevant to be aware of aspects of asymmetrical power dynamics and reciprocity, when social support initiatives for patients with palliative care needs and their relatives are evaluated.

Conclusions

This scoping review provides insight into social support by the community and professionals from the welfare domain in the provision of social support to people with palliative care needs at home and to their (possibly bereaved) relatives and important characteristics of this support. The informal network consisting of family, friends and neighbours is the most important source of social support for the patient, family caregivers and bereaved relatives. Community involvement can arise gradually or be part of an intervention to enhance or complement the social support provided by the already present informal network. Professionals with a main focus on social support, such as social (care) workers, can enhance, complement and substitute social support by the informal network if needed. To achieve that, it is important that unmet social problems and needs of patients and relatives confronted with an incurable disease, death, dying and grief are recognized.

Acknowledgements

Not applicable.

Corresponding author contact details.

Trudy Schutter, Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Noord 21, 6525 EZ Nijmegen, The Netherlands; trudy.schutter@radboudumc.nl.

Author contributions

The study design was conducted by TS, IK, KV and JH. Search strategy and data search were performed by TS, after discussion with the other team members. Records screening and data extraction were completed by TS and IK, and discussed with JH. TS drafted the manuscript, before being revised by IK, KV and JH. All authors approved the final version and are accountable for all aspects of this article.

Funding

This research project is made possible by an independent research grant from the Dutch non-profit foundation Agora, www.agora.nl [no grant number].

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

There are no human participants in this article and informed consent is not required.

Competing interests

The authors declare no competing interests.

Footnotes

1

Public health palliative care (PHPC) is an umbrella term. As Dempers and Gott show in their review, three paradigms of PHPC can be distinguished: The WHO approach with a focus of adequate and equal access to palliative care and medication, and integration of palliative care in the national healthcare system; secondly, the population based approach with a focus on assessment and understanding of population needs by e.g. the use of epidemiology; and lastly, the Health Promotion approach, with a focus on the role of the community and on demedicalisation of death. This last one is often referred to as a (new) public health approach to end-of life care and as the compassionate communities movement. It represents efforts that create greater community involvement in end-of-life care 4.Dempers C, Gott M. Which public health approach to palliative care? An integrative literature review. Prog Palliat Care. 2017;25 [1]:1–10, 5.Whitelaw S, Clark D. Palliative care and public health: an asymmetrical relationship? Palliat Care. 2019;12:1178224218819745.

2

“The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.” 54.WHO. Social determinants of health 2024 [Available from: https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1.

3

In the United Kingdom and the Republic of Ireland, most hospices are independent charities working within and alongside the local health and social care system. Only a minority of the offered services involve staying overnight. Hospice day care is reported to provide a supportive social environment for people living with life-limiting illness 26.Bradley NM, Dowrick CF, Lloyd-Williams M. A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic? BMC Palliat Care. 2022;21 [1]:170.

4

For example, there are on average 3 people/km² in Australia vs. 423 people/km² in The Netherlands 64.United Nations doEaSA. Table 3 - Population by sex, annual rate of pupulation change, surface area and density. Demographic Yearbook − 2022. New York: United Nations; 2023.

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