Professionally led support groups for people living with advanced or metastatic cancer: a systematic scoping review of effectiveness and factors critical to implementation success within real-world healthcare and community settings

Study design

Scoping reviews use rigorous and transparent methods to comprehensively identify and analyse the literature pertaining to a research question. They are suitable for the current research as the evidence base concerning professionally led support groups for advanced or metastatic cancer is complex and heterogeneous. Methods draw on Arksey and O’Malley’s original scoping review framework and subsequent extensions, primarily the 2020 updated Joanna Briggs Institute (JBI) methodological guidance for scoping reviews [48–52]. Reporting is in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [53]. As this review provides an overview of evidence regardless of methodological quality or risk of bias, no quality assessment was conducted, consistent with PRISMA-ScR guidelines.

Population, concept and context

The population included people attending, running or supporting the implementation of support groups for people affected by advanced or metastatic cancer. For the purposes of this review, we used White and colleagues’ criteria for treatable but not curable cancers. These criteria identify cancers that are highly unlikely to be eradicated and that, in the absence of other more imminent causes of death, are likely to lead to death [1]. The concept was support groups, defined as an ongoing gathering of individuals who share common experiences [54]. For the purpose of this review, support groups can take place in person, online or via teleconference but must include the giving and receiving of emotional and practical support as well as ongoing, real-time interaction between group members [54]. Online forums and social media pages that did not involve ongoing, real-time interaction between members were not considered to be support groups and were excluded. The context included all service settings (e.g. hospital and community) in any geographical location.

Research question, data sources and search strategy

The research question was “What has been reported about professionally led support groups for people affected by advanced or metastatic cancer?” A search strategy was developed in consultation with an academic librarian and adapted for each database (Supplementary file S1). MEDLINE and PsycINFO were searched using the Ovid platform; CINAHL was searched using the EBSCO host platform. Searches were run on 15 December 2021. In addition to electronic databases, websites targeting organisations involved in the delivery of support groups for advanced or metastatic cancer care were searched to identify additional documents (e.g. reports and evaluations).

Study selection and data extraction

The titles and abstracts of all unique records were independently screened by two reviewers to generate a list of potentially eligible articles. The full-text articles were retrieved and independently assessed against the selection criteria (Table 1) by two reviewers. Any disagreements were resolved through discussion until consensus was reached, with a third reviewer consulted as necessary. A data extraction form was developed and tested using a subset of five studies. Minor adaptations to the form were made with input from the team during the data extraction process. Two researchers independently extracted the data which were then verified by a third researcher. Data extracted included study characteristics (i.e. author, year of publication, study country, study design); population (i.e. cancer type and stage); intervention (i.e. mode of delivery, frequency, facilitator); and outcomes. Outcome data included (a) intervention effectiveness and (b) factors affecting implementation. Preliminary review of the studies indicated that a 1989 US study of women with metastatic breast cancer reported a survival advantage associated with attending professionally led SEGT-informed support groups [55]. Survival was therefore initially considered a possible outcome; however, given this survival advantage was not replicated by five subsequent studies [56–60], survival was excluded as an outcome of interest.

As few of the studies had an explicit implementation focus, we systematically searched each article for data or information that we could retrospectively link to implementation, including information reported in the methods and discussion. Factors that we believed were potentially related to implementation were mapped to the domains and constructs of the Consolidated Framework for Implementation Research (CFIR) 2.0 and then linked to Proctor’s Implementation Outcomes Framework [61, 62]. CFIR is a meta-theoretical determinant framework that provides a menu of constructs operating at the level of the individual, innovation, organisation or wider environment that have been associated with effective implementation. The CFIR constructs were drawn from 19 frameworks or related theories, including seminal works such as Rogers’ Diffusion of Innovations Theory and Greenhalgh and colleagues’ Diffusion of Innovations in Service Organisations [63, 64]. CFIR can also be used to guide the tailoring of implementation strategies and adaptations for the innovation being implemented. As recommended by Reilly et al. (and subsequently adopted by Damschroder et al. in their CFIR Outcomes Addendum), we differentiated between implementation antecedents and implementation outcomes [61, 65, 66]. According to Reilly et al., implementation antecedents are the factors that predict dissemination or implementation. Under this guidance, acceptability, appropriateness and feasibility do not match constitutive definitions of dissemination or implementation but rather reflect theoretical antecedents of implementation outcomes.

Study characteristics

Characteristics of all included studies are summarised in Table 2. All 19 studies were conducted in high-income, Western countries (USA: n=6; Canada: n=7; Australia: n=4; UK: n=2). Eight were randomised controlled trials (RCTs), 7 were qualitative studies, 2 were cohort studies and 2 were mixed methods studies. There were 1841 participants in total, including 1571 patients (across 19 studies), 262 caregivers or family members (across 4 studies) and 8 healthcare professionals (across 2 studies). Sample sizes ranged from 8 to 238 participants, with an average of 97 participants per study. The average sample size per study for the RCTs and non-RCT studies were 141 and 59 per study, respectively.

Only one study reported on a mixed-tumour group [77]. The remaining 18 studies reported on tumour-specific support groups. Among them, 15 pertained to metastatic breast cancer, 1 to metastatic prostate cancer [72], 1 to advanced ovarian cancer [78], 1 to brain cancer [80] and 1 to mesothelioma [43]. Most of the studies had patient-only support groups (n=15). Two studies included groups specifically for family members and/or caregivers [79, 80] and two had groups that were open to patients, family members and/or caregivers [43, 72]. All support groups were delivered exclusively face-to-face, except for one that employed a hybrid mode of delivery, comprising simultaneous face-to-face and teleconference meetings [73]. All of the group leaders were trained professionals. The groups were typically facilitated by two leaders with different professional backgrounds such as psychiatry, psychology, counselling, oncology, allied health or social work. One study had a facilitator who had breast cancer in remission [67] and another had a patient representative to co-facilitate the group initially but this practice was discontinued due to the turnover of members and their medical situations [72]. Fifteen of the studies featured support groups that met weekly, one met fortnightly [77], two met monthly [43, 80] and no information was available for one study [76]. Meeting duration ranged from 1 to 2 h, during which group members were guided by the facilitators to discuss prearranged or spontaneous themes and share their experiences and emotions. Of the 19 studies, 15 reported support groups that drew on a psycho-theoretical framework: 10 were based on SEGT [58–60, 70, 71, 73, 75, 76, 78, 79]; 4 were based on group psychotherapy (primarily Yalom’s group psychotherapy) [31, 67, 68, 74]; one was based on group psychotherapy and CBT [69]. It was noted that some groups were based on SEGT initially, but they evolved over time to meet the needs of the individual members and of the group as a whole.

Key findings

The effectiveness outcomes and perceived benefits of professionally led support groups for people affected by advanced or metastatic cancer are reported in Table 3.

Effectiveness outcomes

The quantitatively measured outcomes were consolidated into mood (reported in n=5 studies), distress (incorporating traumatic stress and depression, n=4), quality of life (n=3) and pain (n=2). Effectiveness outcomes that were reported by fewer than two quantitative studies are not reported in this review. These outcomes included cost-effectiveness, maladaptive coping responses, phobia, social support and repression.

Mood was measured in four RCTs using the Profile of Mood States (POMS) and one cohort study using the Derogatis Affects Balance Scale (ABS) [81]. POMS is a self-administered questionnaire consisting of six subscales on anxiety, depression, anger, vigour, fatigue and confusion, with the total score indicating general mood disturbance [82]. Classen and colleagues [70] and Spiegel and colleagues [67] reported significant improvement in reducing mood disturbances in the support group participants compared with control participants. Goodwin and colleagues [59] reported a significant interaction of intervention-group assignment with baseline POMS scores, suggesting those who had higher POMS scores (indicating more mood disturbances) at baseline benefited from the support group intervention, whereas those who had lower baseline POMS scores did not. Edmonds and colleagues [69] did not find any significant improvement in POMS scores between support group and control participants. In a cohort study using the ABS, a significant reduction in negative affect and an increase in positive affect (excluding the vigour subscale) were observed among the support group participants over a 12-month period [73].

Traumatic stress in response to cancer diagnosis was assessed in two RCTs and a cohort study using the Impact of Event Scale, a self-report measure for the occurrence of symptoms as a result of a stressful event [83]. Both trials reported significant declines in traumatic stress symptoms among the support group participants [58, 70]. A similar trend was observed in O’Brien and colleagues’ evaluation [73]; however, the reduction in stress symptoms over time was not significant. Depression was assessed in one RCT [58]. The authors reported that women with metastatic cancer who participated in the support group were less likely to develop depression compared to the control participants, measured using the Monash Interview for Liaison Psychiatry.

Quality of life was measured in three RCTs using the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 (QLQ-C30) and the Functional Living Index for Cancer [58, 69, 71]. None reported significant effects of the intervention on overall quality of life. One trial showed a significant improvement among the support group participants in the social functioning domain of the EORTC QLQ-C30 [58].

The impact of support groups on reducing the experience of self-reported pain and suffering in women with metastatic breast cancer was reported in two RCTs [59, 68]. In the study conducted by Spiegel and Bloom [68], one of the intervention groups included self-hypnosis training for managing cancer-related pain in addition to group therapy sessions. Compared to the control group, the support group participants reported significantly less pain sensation and suffering, especially for those who participated in the additional self-hypnosis exercises. In a later study by Goodwin and colleagues [59], both intervention and control participants reported an increase in pain over the course of the study, but the support group participants reported less worsening of pain than did the control group participants. There was also a significant interaction of treatment-group assignment with baseline pain rating, suggesting those who had more pain at the outset benefited from the intervention, whereas those with lower baseline ratings did not.

Perceived benefits

Seven qualitative and two mixed method studies reported on the benefits of attending professionally led support groups, drawing on data collected via surveys (n=2) of patients with metastatic or advanced cancer, interviews/focus groups (n=2) with support group participants and leaders, observation of the group meetings (n=3), content analysis of support group topics (n=1) and a combination of interviews and observation (n=1). Perceived benefits were grouped into the following thematic categories: (1) social connectedness (including connecting with other people with advanced or metastatic cancer, perceived support, sense of belonging, feeling less isolated and feeling understood); (2) existential distress (including facing death/dying, acceptance of illness, meaning of life, fear and concerns about disease progression); (3) information and knowledge (including information on medical treatment, cancer diagnosis and available resources); (4) empowerment and sense of control; (5) relationships with families; and (6) communication with health professionals (see Table 3).

One of the most frequently reported benefits was social connectedness (n=6) [31, 43, 74, 76, 78, 79]. Participating in a support group helped people with advanced or metastatic cancer and their partners connect with others in similar situations, foster a sense of belonging and acceptance and feel supported and less alone. For instance, among the questionnaire responses collected by Leadbeater in an evaluation of a support group for women with metastatic breast cancer, many members said that they had never met anyone with metastatic breast cancer prior to attending the group [76]. Being part of the group, thus, made them feel less alone [76]. In a group for partners of women with metastatic breast cancer, the group helped members open up about feelings and thoughts they felt they were unable to share with their partners [79].

Another benefit of professionally led support group pertained to gaining knowledge and information, reported in six studies [43, 74, 77–80]. For example, Kanter and colleagues found that both patients and carers used the groups to exchange and seek information about the disease and treatment [80].

Five studies reported that dealing with existential distress was an important benefit associated with attending support groups [31, 74, 77–79]. Coping with and facing end-of-life was a theme discussed actively and incidentally within groups. Although it was noted that this could be seen as ‘confronting’ or ‘distressing’ by some, especially those who were newly diagnosed with advanced or metastatic cancer [77], in general participants reported that groups were helpful in addressing the existential distress often experienced by this population through accepting their diagnosis and prognosis, adapting to the illness and normalising death and dying. For example, in their observations, Spiegel and Yalom found the support group to be beneficial in helping its members face death “realistically without denial but also without morbid rumination” (p. 244) and find meaning in the remainder of their lives [31].

Other perceived benefits included empowerment and regaining a sense of control (n=2) [78, 79], improving relationships with families (n=2) [31, 74] and improving communication with health professionals (n=2) [78, 79].

Barriers and enablers to implementation and implementation strategies

Factors influencing the implementation of the support groups were identified in 13 studies (68%). Table 4 provides details of the barriers and enablers grouped according to CFIR domains and constructs and how they relate to the predictors of implementation success (implementation antecedents). The data were categorised as related to the acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%) of support groups.

Ten studies (53%) reported barriers to implementation and 9 studies (47%) reported enablers. These barriers and enablers mapped to twelve CFIR constructs across four domains. The CFIR constructs to which most barriers and enablers were coded were as follows: (1) the extent to which the needs of people with advanced or metastatic cancer were accurately known and prioritised by the organisation and staff delivering the support groups (individuals domain/recipients’ needs: 6 different factors mentioned 19 times across 12 articles); (2) the capability of the support group facilitators to deliver the groups (individuals domain/deliverers’ capability: 3 factors mentioned 5 times across 3 studies); and (3) the capacity to adapt the running and delivery of a support group to meet the needs of a particular patient group within a particular organisational setting (innovation domain/adaptability: 2 different factors mentioned 5 times across 3 articles).

Fourteen implementation strategies were identified across eight studies. Five of the strategies supported implementation or sustainment by addressing factors relating to the capability of the people delivering the innovation (i.e. the skills, experience and competence of the support group facilitators). Four of the strategies supported implementation or sustainment by addressing factors relating to the needs of the support group participants. Three of the strategies supported implementation or sustainment by addressing factors relating to the innovation (i.e. the support groups).

By categorising the factors identified as influencing implementation and mapping them to the antecedents of implementation, we are able to demonstrate how the acceptability of an innovation (from the perspective of recipient, i.e. the person affected by cancer, and deliverer, i.e. the support group leader) can potentially impact upon implementation or sustainment (Table 4). For example, even within a group for advanced cancer patients, there was a need for participants to identify with others who shared similar experiences or circumstances such as cancer type, life stage and role (e.g. carer versus patient) [80]. Diversity within the group could affect acceptability and therefore the initial implementation or long-term sustainment of the group. A possible strategy to overcome this challenge of having a diverse group was encouraging opportunities for members to interact in small groups beyond the formal group meetings [31, 75, 79]. Another key factor was the group leaders’ competence in delivery and management of the group, including dealing with difficult conversations, introducing new members and managing deaths of members [43, 58, 76, 79]. Identified strategies included providing appropriate training, access to training resources such as manuals and workshops, monthly reviews and evaluations, debriefing and reflection, and supervision [43, 58, 59].

Strengths and limitations

A strength of our review is that it focuses specifically on people with advanced or metastatic cancer and on professionally led support groups. Reviews of psychosocial support for people with cancer tend to report effectiveness of peer support programs for cancer patients in general, and rarely provide data specific to those with advanced or metastatic cancer. By including both quantitative and qualitative studies that used a range of study designs, we captured the effectiveness outcomes measured using validated scales (e.g. distress, mood and pain) but also the benefits that have been reported to be valued most by people attending support groups (e.g. reducing isolation, building connection, sharing of experiences). A further strength is that we mapped the implementation antecedents and outcomes to CFIR 2.0, a comprehensive meta-theoretical implementation framework. Mapping to CFIR 2.0 helped us identify and categorise barriers and enablers across different levels, from individuals directly involved in the implementation to the surrounding organisational setting. However, as this mapping was done retrospectively, we cannot be certain that some important domains, constructs, outcomes or antecedents may have been missed.

The review has several limitations. First, much of the evidence for effectiveness comes from the eight RCTs, all of which evaluated the effectiveness of SEGT in patients with metastatic breast cancer. The more recent studies were typically small-scale evaluations of community- or hospital-based groups [79, 80]. In contrast to the earlier RCTs of SEGT, many of these later studies were not implementing a manualised support group intervention; it was therefore not always clear what the components or the ‘active ingredients’ of the intervention were [101]. Furthermore, the inconsistency of measures and follow-up intervals made it difficult to compare effectiveness outcomes across studies. Most trial studies assessed benefits of the group for patients with metastatic breast cancer 1 year after joining. In the absence of ongoing, regular evaluations, it is unclear if these benefits were sustained beyond the follow-up periods. Second, clear patterns of implementation outcomes could not be observed due to the lack of standardised measures as well as inconsistency in the reporting of implementation results. Some of the data on implementation barriers and facilitators were reported anecdotally by the study authors when discussing the effectiveness outcomes of the support group or describing the process of setting up the group. Thus, the quality of the data relevant to the implementation outcomes was inconsistent across the studies. A similar limitation was reported in a recent review of cancer peer support interventions for people with advanced cancer [102]. As Walshe and colleagues pointed out, non-standardised reporting has implications for both implementation practice and study replication. The recent focus on more transparent reporting of trials including guidelines for reporting implementation outcomes means that future studies are more likely to report the data critical to implementation and replication [103–105]. Finally, there was limited evidence identified in the review on the benefits of support groups for families and carers of people with advanced or metastatic cancer. Given the growing population of people living with cancer, more attention needs to be paid to families and carers and their unmet needs for psychosocial support.

Conflict interests

The authors declare no competing interests.

Ethics approval

Not applicable.