Introduction

In uncertain times of cancer diagnosis and treatment, having access to comprehensible and clear information on the disease and its treatment is crucial for patients with cancer [1]. Understanding what is going on and what can be expected helps in coping with the disease. A recent review has shown that informational needs may change over time, and that, in general, informational needs in patients with cancer are not always met [1]. For instance, patients may lack information on how to deal with possible side effects or how to support their recovery or treatment [2]. In addition, patients with cancer are often provided with information at the time of diagnosis, although there is evidence that attention and recollection are severely attenuated when the patient has increased levels of distress, making this not the best of timing [3, 4]. In addition, supportive care that is ‘the prevention and management of the adverse effects of cancer and its treatment’ [5] is important for patients with cancer to manage their condition [6]. Supportive care includes “the management of both physical and psychological symptoms and side effects across the continuum of the cancer experience from diagnosis, through anticancer treatment, to post-treatment care” [5]. For instance, 30% of all patients with cancer suffer from psychological complaints such as adjustment disorders, stress, anxiety, and depression [7]. Moreover, these psychological complaints may lead to psychosocial problems, such as the inability to maintain work or activities of daily living, financial instability, and disturbed family relations [7, 8]. An international survey of patient insights into cancer care found that 69% of the respondents felt the need for psychological and social support during or after their cancer care, and of these, 34% stated it was not available [2]. Supportive care has positive effects on patients’ wellbeing and emotional adjustment to cancer and is associated with fewer psychological complaints [9,10,11,12,13,14,15,16,17].

Traditionally, patients with cancer receive information and supportive care from healthcare professionals that is through the formal care route. In addition, informal care can play a role. Informal care can be defined as “unpaid care and may involve a variety of actions, like transport to doctors, social companionship, emotional guidance, or help with arranging professional care” [18]. Informal care is usually provided by relatives and friends, or by volunteers arranged by an institute independent of the hospital, such as informal “walk-in centers” outside the hospital or “peer-support” through an internet community or via fora. Several studies have shown that such informal care, independent of the hospital, is of additional value in coping with the psychosocial impact and practical issues of diagnosis and treatment in patients with cancer and their families [19,20,21,22,23,24,25]. Informal supportive care can also be arranged by initiatives that work closely together with institutes or hospitals. The terminology used for such initiatives varies from “information and support centers” [26], “cancer information services” [27], and “cancer navigation services” [28], to programs initiated by National Cancer Societies such as “Reach To Recovery.”

It can be hypothesized that these initiatives combine the benefits of formal care and the benefits of informal care. However, there is no synthesis available of the research undertaken on such initiatives. This review aims to explore what is known about initiatives that combine formal and informal care, in terms of what they offer, and how these initiatives are experienced by, e.g., patients, volunteers, and healthcare staff.

Methods

Aim

This systematic literature study is explorative and aimed to learn more about (1) which types of initiatives that combine formal and complementary informal supportive care for patients with cancer are described in the literature, (2) what type of care they offer, and (3) how they are evaluated in terms of outcome measures. In this review, informal care refers to care given by volunteers, for example, volunteers that provide company, a listening ear, creative workshops, and practical assistance. Formal care includes supportive care or the coordination thereof by healthcare professionals. Examples of formal care include care provided by nurses, oncologists, social workers, and psychologists.

Inclusion and exclusion criteria

Studies were included if they focused on adult patients with cancer and if (1) at least one type of hospital formal care was present (doctor, nurse, hospital psychosocial caregivers) together with (2) at least one type of informal care, such as (peer)volunteers, explicitly named websites or online support programs and non-hospital therapy such as yoga and creative therapy, (3) the collaboration between (1) and (2) was explicitly mentioned/described in the article. Excluded were (i) reviews, (ii) congress abstracts, (iii) articles exclusively on palliative care or (iv) exclusively on children and adolescents. Also excluded were (v) articles wherein informal care was provided by family or friends only. Finally, (vi) intervention studies or studies on the feasibility or the development of certain programs were excluded, unless they were already implemented or about to be implemented. Papers were limited to those written in English.

Search terms and databases

The main search terms were “Cancer patients,” “Psychosocial care,” and “Health care organization.” There were no restrictions regarding the date of publication. This search was applied to Medline ALL Ovid (1946–present), Embase.com (1971–present), PsycINFO Ovid (1806–present), and CINAHL EBSCOhost (1939–present). The final search was run on July 29, 2021. The full search strategy is reported in Supplementary Table 1. Furthermore, the reference lists of all relevant studies were checked to find additional studies.

Procedures

One reviewer (HD) screened all article titles, and a second reviewer (either LK, EB, WB, or LJ) reviewed the same set of article titles. If the title of the study appeared to indicate that a combination of formal and informal care could be described, we also reviewed the abstracts. Five authors (HD, LK, EB, WB, LJ) were engaged in the assessment of title and abstract and all titles and abstracts were reviewed by at least two reviewers, and all were assessed by HD. In case of disagreement, the two reviewers aimed to reach a consensus. In case this turned out to be difficult, a third reviewer was involved to come to a conclusion. All included papers were read by two reviewers (HD and EB). Again, in case of disagreement, the two reviewers aimed to reach a consensus. Where this turned out to be difficult, a third reviewer (LK) was involved to come to a conclusion. The quality of qualitative studies was assessed with the aid of the Critical Appraisal Skills Program (CASP) checklist that focuses on qualitative studies.

Outcomes

We aimed to retrieve information on (1) the organization format, (2) which parties were involved and/or collaborated, e.g., hospitals and organizations, (3) the professions that were involved in providing care and/or coordinating the volunteers, (4) how volunteers were selected and whether they were trained, (5) the setting in which the care was provided, e.g., at the hospital or at the patients’ home settings, (6) the type of care that was provided, and (7) how the initiatives were evaluated.

Results

A total of 7183 studies were retrieved from the databases, and 8 additional articles were identified through cross-referencing. A total of 4869 studies were eligible for screening after duplicates were removed and eventually 18 studies met the inclusion criteria. Procedures and search results are described in the flowchart of Fig. 1. If the full text was not retrievable via the standard electronic subscriptions of the academic library of the Erasmus Medical Center, then the library sent an international request to other libraries. If that also failed, we personally approached the authors by email. Most exclusions were due to a lack of description of the collaboration between formal and informal care in the professional setting. Furthermore, many excluded articles focused solely on palliative care. The included qualitative studies were assessed with the aid of the CASP checklist. Most qualitative studies described the aim of the research (9/10), the research design (8/10), the recruitment strategy (7/10), and gave a clear statement of findings (7/10). Less frequently mentioned items were ethical issues (5/10), and the relationship between the researcher and the participants (4/10). The results of the quality assessments are summarized in Supplementary Table 2. An overview of the characteristics of the articles included is given in Table 1.

Fig. 1
figure 1

Flowchart of literature search and study selection

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Table 1 Characteristics of the included studies
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Descriptions of the initiatives

Organization format

Studies were conducted in 17 countries: France, Belgium, Switzerland, Ireland, Sweden, Iceland, Finland, Denmark, Norway, England, Luxembourg, Spain, the USA, Italy, Canada, New Zealand, and Australia. Most initiatives (15/18) were housed within one or multiple hospitals or clinics [29,30,31,32,33,34,35,36,37,38,39,40,41,42,43]. Eleven programs were initiated by an independent organization and 7 by a hospital [32, 36, 38, 39, 41, 42, 44]. Services of 3 initiatives were (additionally) provided in the patients’ home settings [29, 32, 45].

Selection and training of volunteers

Six programs solely recruited volunteers who had personal experiences with cancer [30, 34, 38, 40, 41, 43]; in 5 of these programs, patients were paired with volunteers who had been diagnosed with a similar cancer diagnosis [30, 38, 40, 41, 43]. Because of the pairing, volunteers were only women in 4 studies [30, 38, 40, 43]. All but one study reported that volunteers with personal experiences were recruited at least one year after their cancer treatment. One study exclusively recruited volunteers without a personal cancer experience [32] and other studies (7/18) recruited volunteers irrespective of a personal cancer experience [31, 33, 35,36,37, 39, 45]. The remaining 4 studies did not mention on what basis they recruited volunteers [29, 42, 44, 46].

All but 3 studies [39, 42, 46] indicated that volunteers required some preparation before they were allowed to provide informal care: 12 studies described how volunteers had to follow a training program, another reported that new volunteers reviewed a detailed checklist with a trained volunteer and were required to take part in the unit’s weekly conferences [31], and 2 studies mentioned that the volunteers were instructed but did not describe what kind of instructions were given [41, 43]. The duration of the training varied from 8 to 20 h and training programs differed. Some were thoroughly described and covered medical, emotional, communicational, professional, and ethical aspects of working with patients with cancer [32, 35,36,37,38, 42, 45]. Five studies did not clearly mention the content of the training programs [29, 30, 33, 34, 40]. Additional assistance in terms of monthly follow-up meetings or the guidance of volunteer coordinators or experienced volunteers was mentioned in ten studies [31,32,33,34,35,36,37,38, 40, 45].

Care provided

In most studies, the care provided consisted of emotional support (15/18) [31,32,33,34, 36,37,38,39,40,41,42,43,44,45,46] and/or providing information to patients and their families (13/18) [29, 30, 32, 33, 36,37,38,39,40,41,42,43,44]. In addition, 6 studies offered occupational and recreational therapy such as relaxation techniques, the cosmetic course “Look Good Feel Better,” painting, singing, and bingo games [29, 31,32,33, 35, 39, 42]. Some studies (11/18) mentioned practical services such as assisting or transporting patients to the doctors’ offices and/or helping to coordinate their care with medical staff [29, 32, 33, 36,37,38,39, 46], visiting the patient in the hospital [30, 33, 38, 43], providing care in the patients’ home settings [29, 32, 45], giving direct financial assistance through a patient support fund [38], and providing a temporary lightweight prosthesis [30]. Seven studies paired volunteers with patients or upon patients’ requests, and one-to-one care was provided [30, 33, 38, 40, 41, 43, 46].

Evaluation

Outcomes

The studies included differed regarding the evaluation of outcomes and no similar outcome measures were used. Only one study compared the experiences of patients who used the program to patients who did not [33]. Fifteen studies focused on experiences and satisfaction levels of patients, family, volunteers, and/or nurses [32,33,34,35,36,37,38,39,40,41,42,43,44,45,46]. There was a wide variation in how thoroughly the data collection was performed, as well as the description thereof. Most studies surveyed participants and used open-ended questions (9/18) [33, 36,37,38,39, 41, 43, 44, 46], questions about demographics (11/18) [32, 33, 36,37,38,39, 41,42,43,44, 46], and/or self-designed questionnaires (8/18) [32, 33, 38, 40, 42,43,44, 46]. Three studies did not clearly state how information was obtained [34, 35, 45], of which, just one study mentioned that qualitative information was collected with the help of interviews, but did not mention which questions were asked [34]. Another study exclusively gave statements and quoted patients and volunteers [35]. Finally, one study simply reported that the volunteers’ experiences were assessed at their monthly support meetings but gave no information on how the patients’ experiences were gathered [45].

The remaining 3 studies were descriptive in nature: they described the collaboration between formal and informal supportive care and details on the care provided, but no outcomes were measured [29,30,31]. Results and outcomes of the articles included are summarized in Table 2.

Table 2 Overview of outcomes from 18 studies
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Patients’ experiences

Twelve studies evaluated the experiences and perceptions of patients with cancer concerning the care given by the initiatives. All studies found that patients had positive experiences with the programs as they helped the majority of patients to cope with cancer in terms of informational needs, social and emotional support, help with the activities of daily living, help with financial concerns, and family-related issues [32, 33, 35, 36, 38, 40,41,42,43,44,45,46].

As mentioned above, only one study made use of a comparison group by including all patients and family members (both users and non-users) attending either the oncology out-patient or the radiation oncology clinic. Differences were found in the needs of non-users compared to users: non-users had less need for information, were less likely to have financial needs compared to users, were half as likely to be in need of emotional support, and had the same few needs for help with daily activities or transportation [33].

Additionally, one study evaluated the program both in a hospital setting and at the patients’ homes and found that patients considered volunteers more useful in the home setting on every topic investigated [32].

Five studies focused only on experiences of patients with specific cancer types such as lung cancer, gynecologic cancer, and breast cancer. These programs found positive results on more specified care such as: providing support in self-image issues related to cancer treatment (e.g., hair loss) [38] and providing a link with local communities of cancer survivors with a similar diagnosis of breast cancer [40].

Two studies focused on weaknesses of the programs and the findings were in line with each other [33, 36]. Both studies found that patients had limited awareness of the volunteers’ roles and responsibilities. Additionally, both studies stated that patients wished to learn about the services earlier: one study explicitly mentioned that patients wanted timely access to information about services to meet their evolving needs (especially at the pre-treatment phase) [36], the other study reported that patients preferred a visit as soon after diagnosis as possible [33].

Some studies explored whether patients felt that a personal cancer experience was a requirement for volunteers. One study found that the majority of patients felt that this was not required as other qualities of volunteers were more important, e.g., showing compassion, empathy, and having a friendly, outgoing nature [36]. This was in line with the findings of another study that found beneficial qualities of volunteers, mentioned by patients during the interviews. These included more “generic” qualities such as good listening skills, being helpful, being resourceful, and giving understanding, and reassurance through interactions with the patients. In this study, personal experiences with cancer were not explicitly mentioned by patients, volunteers, and staff members [39]. On the contrary, in a program that only included volunteers with a personal cancer experience of providing care, patients stated that “it meant a lot to talk to a person who knows how you feel.” Remarks were made to the effect that it felt more appropriate to talk to former patients because they had been through a similar process and thus knew what the patients were talking about [41].

Volunteers’ experiences

Ten studies evaluated the experiences of volunteers. All of these found that volunteers had positive experiences with providing care and that volunteers benefited as their contributions were of significance to the patients [32, 34, 35, 37, 39,40,41, 43, 45, 46]. Four studies that evaluated the experiences of health staff members on the volunteers’ care provided were in line with these findings, and agreed that volunteers enhanced the patient experience, specifically by working together with professionals to meet the patients’ emotional, practical, and informational needs [32, 39, 43, 44]. In one of these studies, both nurses and volunteers were asked to fill in a questionnaire on the contributions of the volunteers. Volunteers and nurses largely agreed on, e.g., providing help for information, support for families, and spiritual support. However, volunteers considered themselves more engaged in the psychosocial support of patients rather than in supporting, relaxing, and comforting activities, in contrast to the opinion of nurses [32].

Some remarks and negative experiences were reported in 4 studies [34, 37, 40, 46]. One study found a lack of supervision, lack of communication on the training program, and lack of valued appreciation of their work by their volunteer facilitators [37]. A different study made suggestions on how to improve the services. For example, volunteers wished for further training to be able to respond to patients’ requests for information on a broad range of topics. Volunteer coordinators commented on developing a protocol with the local nursing unit manager to ensure that patients were told about the services [34]. In one study measures, e.g., car insurance coverage and reimbursement for gas, and recognition for the services provided, were reported as reducing volunteers’ dissatisfaction in providing transportation services [46]. Furthermore, one study evaluated the experience of trained volunteer breast cancer survivors, who provided care at least one year after cancer treatment. This study found that one-third of the volunteers reported that the service brought up distressing thoughts about their own cancer experiences. Hence, the study stated that support for the volunteers was a crucial component of a successful program. On a positive note, the study reported that volunteers were very satisfied with their participation in the program, and that the volunteers believed that they benefited from participation in monthly mentor meetings. These meetings provided education and support to help volunteers manage distressing feelings regarding their own breast cancer diagnosis: they obtained support and learned additional coping skills to manage their distress [40]. By contrast, another study reported that none of the volunteers felt that being in the hospital environment was confrontational or made it difficult to provide peer support to women, nor that they felt ill-equipped to deal with women’s concerns, or that volunteering was more challenging than they had anticipated [43].

Discussion

This study aimed to learn more about (1) which types of initiatives that combine formal and complementary informal supportive care for patients with cancer are described in the literature, (2) what type of care they offer, and (3) how they are evaluated in terms of outcome measures. Most initiatives (15/18) were housed within one or multiple hospitals or clinics, and 11 programs were initiated by an independent organization and 7 by a hospital.

The satisfaction with the care offered by these initiatives was evaluated in patients, volunteers, and hospital staff, and related to informational needs, social and emotional support, help with activities of daily living, help with financial concerns, and/or issues in the home environment. Even though there was high heterogeneity in the type of care the initiatives provided, all care was evaluated positively. Some remarks were made by patients on the limited awareness of the services, and the volunteers’ roles and responsibilities.

We found that the quality of the studies included varied greatly and studies were very diverse in terms of the outcome measures used for evaluation. Hence, it was not possible to combine the outcomes into a formal meta-analysis. This lack of similarity in the outcome measures may have related to a lack of consensus on the precise goal of the initiatives, other than “providing support to the patient.” In addition, it is difficult to perform studies on the effectiveness of initiatives which are already implemented as this may lead to the withholding of care from subgroups of patients. However, it should be possible to investigate differences in effectiveness between hospitals, if there is variation in the way they have organized the combination of formal and informal care, and if one is able to control for differences in patient populations and other circumstances. This in turn might be complicated, and to date, no comparison between different centers has been undertaken. However, it is worth noting that studies focusing on the effectiveness of experimental interventions showed promising results in terms of informational needs [47, 48], reduced stress, increased hope, and overcoming loneliness [47,48,49,50] in patients with cancer. For example, Schofield [51] compared an intervention, in which formal and informal cares were combined, to care as usual in women with gynecological cancers receiving curative radiotherapy. The nurse- and peer-led psycho-educational intervention consisted of nurse-led consultations and peer telephone support, and patients allocated to usual care received a cancer council booklet and information from their treatment team. Although no effects were found for psychological distress, patients in the intervention arm had better treatment readiness, fewer needs for information on the health system (e.g., procedural concerns), and fewer concerns about sexuality. Future research, in the form of high-quality controlled trials, is warranted to investigate whether the combination of formal and informal care is of additional value for patients with cancer in terms of information needs and supportive care compared to solely receiving care as usual.

As shown in this review, nearly all studies (17/18) included only patients who found their way to the initiatives and it may be that these “users” were positively biased compared to “non-users.” On the other hand, the initiatives were not meant to be compulsory, and there is no reason to believe that all patients and/or relatives were in need of the care offered by these initiatives. In that respect, the investigations were not biased, because they focused on the intended target populations. There was limited information given on patient characteristics, e.g., socioeconomic status. What was reported was that more women than men made use of the services. This, however, does not mean that an investigation among “non-users” is without utility. Such an investigation could provide insights into the needs of ‘non-users’ on information and support, which may be accessed through a different channel, such as formal care or web-based programs. One can even suggest that it is not only the patient who is the “consumer” of the benefits, but that there are different stakeholders who also experience benefits. For example, the physician might benefit from more well-informed and compliant patients. And if not only patient satisfaction is increased but also the time and energy of the physician is better utilized, the initiatives may hold the promise of reducing the demands on the healthcare system.

As a result of focusing on (nearly) implemented programs, we evaluated only initiatives/programs that succeeded. Some programs may have failed for a variety of reasons. However, to our knowledge, no studies describing the failure of implementation have been reported in the literature to date. It would be interesting to gain an insight into these reasons, as this could help to prevent failure in launching future programs.

Several studies focused on the volunteers’ experiences and the benefits of their participation. Volunteers stated that most visits they made were experienced as positive and rewarding and they were confident about their contribution to general healthcare. Some volunteers commented on the need for further training as many patients asked for information about a broad range of issues. All but 3 studies reported that volunteers followed some sort of preparation before they were allowed to provide care. Thus, there appears to be a consensus that preparation, in terms of training programs or instructions, is a necessary condition for volunteers to provide care successfully. A variation in the recruitment of volunteers was observed within the studies. Three studies focused on whether patients felt that a personal experience with cancer was a requirement for volunteers. Two studies found that the majority of patients felt that this was not required as different qualities were more important. By contrast, in one study, only volunteers with a personal cancer experiences provided care, and patients stated that “it meant a lot to talk to a person who knows how you feel.” No conclusion can be drawn yet as to whether it would be beneficial for the care provided if volunteers have personal experiences with cancer.

Based on the literature search we believe that the combination of formal and informal care at least holds the potential of added value, since informal care is trained by, and can refer to, formal care. The quality of the initiatives can be guaranteed as healthcare professionals provide feedback on the services of these programs/initiatives. Moreover, this combination has the greatest potential to be cost-effective, since it can probably substitute formal care more easily than when informal care is delivered independently of formal care. It can be hypothesized that informal care provided by volunteers is relatively inexpensive compared to formal care requiring provision by healthcare professionals. Unfortunately, none of the articles examined provided information on costs. A closer look at the quantity and quality of the services these initiatives provide, and the related costs, could help to provide insights into their cost-effectiveness. It would thus be interesting to gain more insights into who benefits from these initiatives in addition to patients, and into their cost-effectiveness.

Conclusion

In summary, evaluating initiatives that combine both formal and informal supportive care is difficult since consensus on goals and outcomes is lacking. This does not mean that the outcome of this review should be regarded inconclusive. If the goal of such initiatives is patient satisfaction with the care provided, such as information and/or support, then, the outcome of this review is positive. Based on the review’s results, initiatives combining formal and informal supportive care at least hold the potential of added value for both patients with cancer and their families in coping with the diagnosis, treatment, and consequences thereof. In this respect, support for, and adequate training of, volunteers can be viewed as success factors.