Background
The incidence of cancer is rapidly growing and will affect over 35 million people globally by the end of 2050 (World Health Organization [WHO] 2024). The growth in cancer incidences can be attributed to the persistent increase in population density and an ageing population (Australian Institute of Health Welfare [AIWH] 2023). In Australia, cancer is known as one of the major contributors to mortality, accounting for 3 out of 10 deaths in 2023 (AIWH 2023). Although there have been many advances in early cancer diagnosis and an increase in survivorship during recent decades, the number of deaths due to cancer is constantly rising (Kokkonen et al. Reference Kokkonen, Tasmuth and Lehto2019).
As individuals are diagnosed with cancer and undergo medical treatment, their physical, emotional, financial, social, and psychological aspects of life are adversely impacted (Catona et al. Reference Catona, Greene and Venetis2022; Eyni et al. Reference Eyni, Mousavi and Sepahvand2024; Frambes et al. Reference Frambes, Given and Lehto2018; Hamilton and Kroska Reference Hamilton and Kroska2019). As a result, individuals rely on unpaid caregivers’ support (Cui et al. Reference Cui, Shi and Li2023; Fenton et al. Reference Fenton, Ornstein and Dilworth-Anderson2022). Unpaid cancer caregivers (UCCs) are considered friends and family members of individuals with cancer, who have an intimate relationship and provide care and support (Bahrami and Nasiri Reference Bahrami and Nasiri2024; De Padova et al. Reference De Padova, Casadei and Berardi2019). UCCs often take on various responsibilities, from daily care such as cooking and bathing to more complex tasks such as administering medication and wound care (Bining et al. Reference Bining, Wasserman and Brahim2022; Geng et al. Reference Geng, Chuang and Yang2018; Stadelmaier et al. Reference Stadelmaier, Assemat and Paternostre2022). UCCs may attend regular hospital visits and take on a pivotal role in end-of-life decision-making and symptom management, particularly for loved ones with advanced stages of cancer (Alam et al. Reference Alam, Hannon and Zimmermann2020; Bining et al. Reference Bining, Wasserman and Brahim2022). Moreover, UCCs’ contribution to caregiving has assisted in addressing healthcare workforce shortages and has saved an estimated $80 billion in patient-related care costs annually in Australia (Bajwah et al. Reference Bajwah, Oluyase and Yi2020; Carers Australia 2020).
Cancer caregiving can have positive impacts on UCCs such as personal growth and satisfaction; however, they often feel unprepared to acquire the burden of cancer-related responsibilities (McDonald et al. Reference McDonald, Swami and Pope2018; Mooney et al. Reference Mooney, Coombs and Whisenant2024; Too et al. Reference Too, Lelei and Adam2023). This is because UCCs perform individual tasks without any previous formal training (Mollica et al. Reference Mollica, Litzelman and Rowland2017; Wen et al. Reference Wen, Chou and Hou2021). Literature has suggested that UCCs spend more than 40 h per week providing care for their loved ones, which can increase to 66 h in the final year of cancer (Booker et al. Reference Booker, Bays and Burnett2021; Xiang et al. Reference Xiang, Guzman and Mims2022). Due to the strong emotional bond between UCCs and the individuals diagnosed with cancer, UCCs often give a high priority to their loved one’s needs and ignore their own (Lee et al. Reference Lee, Yiin and Chao2016; Hashemi et al. Reference Hashemi, Irajpour and Taleghani2018) potentially leading to isolation and feelings of helplessness (Mishra et al. Reference Mishra, Biswas and More2020). As a result, UCCs often experience high levels of depression, anxiety, and emotional distress due to unmet supportive needs while caring for individuals with cancer (Wang Reference Wang2021; Morgan et al. Reference Morgan, Lengacher and Rodriguez2022). Therefore, it is important to facilitate access to informational, practical, and emotional support for UCCs to promote their well-being while providing care for individuals diagnosed with cancer (Li et al. Reference Li, Shapiro and Klein2021).
Social support is recognised as a significant factor in enhancing individuals’ well-being. It mitigates the adverse effects of stressful circumstances and provides caregivers with essential informational, emotional, and practical assistance at every stage of the cancer continuum (Leggett et al. Reference Leggett, Meyer and Bugajski2021). Social support can be assumed as either perceived or received support by individuals (Leggett et al. Reference Leggett, Meyer and Bugajski2021). Perceived social support can be described as an individual’s subjective assessment of the availability of support when needed, whereas received social support refers to practical assistance provided to an individual (Gutiérrez-Sánchez et al. Reference Gutiérrez-Sánchez, López-Martínez and Da-silva-domingues2024; Haugan Reference Haugan, Haugan and Eriksson2021). A recent systematic review conducted by Gutiérrez-Sánchez et al. (Reference Gutiérrez-Sánchez, López-Martínez and Da-silva-domingues2024) demonstrated that individuals who perceived a supportive network to be available frequently reported receiving assistance from social networks during stressful situations within the context of caregiving. Additionally, Krok et al. (Reference Krok, Telka and Kocur2024) reported that individuals with cancer who perceived social support from their networks were more likely to receive assistance, enabling them to manage their diagnosis more effectively while experiencing reduced anxiety and isolation. Therefore, both perceived and received social support can have a positive impact on an individual’s well-being, reducing the sense of isolation in stressful situations.
Peer support is among the most prevalent forms of social support, provided by family members, friends, UCCs with first-hand experience in cancer caregiving, and trained volunteers within the community (Adamakidou et al. Reference Adamakidou, Menti and Charalambous2023; Blanco et al. Reference Blanco, Guerra and Rubio2023; De Maria et al. Reference De Maria, Tagliabue and Ausili2020). Like social support, peer support can reduce the impact of stressful situations by shaping individuals’ responses to these conditions, offering coping mechanisms, providing information and guidance, and assisting in addressing the challenges associated with cancer caregiving (Dennis Reference Dennis2003; Husted et al. Reference Husted, Iben and Piil2022; Skirbekk et al. Reference Skirbekk, Korsvold and Finset2018).
However, despite the positive impact of social and peer support on UCCs, the high demand for care required by individuals with cancer results in numerous unmet supportive needs for UCCs (Molassiotis and Wang Reference Molassiotis and Wang2022). While several studies have focused on the supportive needs of individuals with cancer and their UCCs in the early stages of cancer, including emotional distress and anxiety about cancer recurrence (Lambert et al. Reference Lambert, Harrison and Smith2012; Miroševič et al. Reference Miroševič, Prins and Selič2019), limited research has explored the unmet needs of UCCs residing in rural and remote areas. Stiller et al. (Reference Stiller, Goodwin and Crawford-Williams2021) also note that UCCs living in rural and remote areas require additional support in relation to finances, transportation, cancer symptom management, as well as their own physical and emotional well-being from their social networks. As a result, UCCs who reside in rural and remote areas are more likely to experience a lower quality of life, poorer physical health, higher burden of care, and greater financial issues than their urban counterparts (O’Connor et al. Reference O’Connor, Sedghi and Dhodapkar2018; Xu et al. Reference Xu, Kadambi and Mohile2021). While it is known that UCCs may face unique challenges which can be exacerbated by rural and remote contexts, no systematic review has been conducted to date to explore perceived and/or received peer support needs of UCCs residing in rural and remote areas with a specific focus on informational, practical, and emotional needs.
Aim
This systematic review aims to explore the perceived and/or received peer support needs of UCCs residing in rural and remote areas with a specific focus on informational, practical, and emotional needs.
Methods
This systematic review was undertaken following the 2020, 27-Item Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting (Page et al. Reference Page, McKenzie and Bossuyt2021). To assess the quality of the articles, the Mixed Methods Appraisal Tool (MMAT) was used to encompass all study designs, including qualitative, quantitative, and mixed-method studies (Hong et al. Reference Hong, Gonzalez-Reyes and Pluye2018). The systematic review was registered on PROSPERO CRD42024544502.
Eligibility criteria
Primary research studies of any methodology were included if they focused on: (1) UCCs (such as family members, parents, siblings, partners, and adult children) who provided care to an adult family member or a friend diagnosed with advanced terminal cancer and lived in remote and rural areas; (2) for this review UCCs were considered to be adults and over 18 years old; (3) primary studies were included if they explored UCCs perceived and/or received support provided by their peers, such as other UCCs, family members, friends and trained volunteers; (4) were studies published in English from 2004 to 2024, as the earliest research on online peer support emerged post 2004.
Exclusion criteria
The research was excluded if it related to: (1) UCCs of children with cancer due to the complexity of additional needs that UCCs may require in managing the potential loss of a child; (2) grey literature; (3) conference papers, abstracts, discussions, reports, chapter books, guidelines, protocols, editorials, and opinion papers; (4) protocols, and tool validation studies.
Search strategy
An advanced search of databases CINAHL, ScienceDirect, PubMed/ Medline (via Ovid), ProQuest, Web of Science, Scopus, and Informit between 2004 and 2024 was conducted to identify studies that explored the perceived and/or received peer support in meeting informational, practical, and emotional needs of UCCs residing in rural and remote areas. The following concepts were included in the initial key concepts: “Peer*” OR “Support*” OR “Peer group” OR “social support” AND “psycho-oncology” OR “cancer” OR “neoplasms,” AND “Caregiv*” OR “family” AND “terminally ill” OR “hospices” AND “rural population.” The completed search strategies (inclusive of equivalent concepts) are presented in the supplementary supporting material.
Study selection
After retrieving relevant studies, all duplicates were removed through Endnote 20. Studies were then imported into the Joanna Briggs Institute Unified Management, Assessment and Review of Information (JBI SUMARI) to facilitate the selection process (Piper Reference Piper2019). MK and BV assessed titles and abstracts against the eligibility criteria independently. Following this, MK and BV reviewed the selected full-text articles. Any conflicts were resolved by the third and fourth authors, SS and LE, to reach a consensus.
Quality assessment appraisal checklist
The MMAT was employed to assess the quality of the articles (Hong et al. Reference Hong, Gonzalez-Reyes and Pluye2018). The MMAT tool appraises the methodological quality of studies, including qualitative studies, mixed-method studies, and quantitative studies through “Yes,” “No,” or “Cannot tell” responses. All types of studies were initially assessed by identifying clear research questions and congruency with collected data. The tool consists of 5 additional questions based on specific study designs and assesses aspects of methodological approaches focused on data collection methods, alignment between methodology and aims, data analytic techniques, results and rigour, and validity. The authors of the MMAT tool recommend avoiding using a summative numerical score since a single score does not provide comprehensive information on which aspects of the study might be unclear. As a result, Hong et al. (Reference Hong, Gonzalez-Reyes and Pluye2018) advise presenting a detailed rating from each criterion to ensure the methodological quality of each included study is well-informed. For the purposes of this study, 3 authors appraised the studies independently, and any conflicts were resolved through discussion (Appendix A).
Data extraction
Data were extracted using the JBI SUMARI data extraction method (Piper Reference Piper2019). The characteristics of each article, including the author(s), year, country, study design, sample size, recruitment methods, data collection tools, data analysis tools, and findings, were extracted (Appendix B).
Data synthesis
Due to the non-homogenous of the included studies, a thematic narrative analysis was used for data synthesis (Popay et al. Reference Popay, Roberts and Sowden2006). The stages of analysis included familiarisation, generating initial codes, searching for themes, and reviewing and defining the themes (Braun and Clarke Reference Braun and Clarke2006). Coding was undertaken by MK and BV, and a codebook was developed after discussion with senior researchers LE and SS to reach consensus. Examples of initial codes included: limited post-bereavement support, peer support improved self-confidence, peer support as a bridge to healthcare services, limited professional healthcare services, lack of reliability in peer support, and UCCs were neglected by their peers. The codes were then grouped into similar themes by MK and BV. Themes were constantly developed and shared with the third and fourth authors, SS and LE, in regular meetings to reach a consensus, to ensure methodological rigour and reduce any potential bias.
Results
Study characteristics
A total of 1037 primary studies were extracted from the 7 databases. After removing 340 duplicated articles, MK and BV independently screened the titles and abstracts of 697 studies. There was a total of 8 studies after 12 full-text screenings. Four qualitative studies (Jack et al. Reference Jack, Kirton and Birakurataki2011; Lockie et al. Reference Lockie, Bottorff and Robinson2010; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023), 2 mixed-method (Hudson et al. Reference Hudson, Quinn and Kristjanson2008; Larocque et al. Reference Larocque, Rietze and Heale2024), 1 cross-sectional study (Brazil et al. Reference Brazil, Kaasalainen and Williams2013), and a prospective survey (Ervik et al. Reference Ervik, Andersen and Skirbekk2020) were included. The final search results are detailed in the PRISMA flow diagram (Figure 1).
Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.
Following data synthesis, 4 main themes were identified regarding the perceived and/or received peer support on meeting UCCs’ unmet needs residing in rural and remote areas. The 4 themes are: (1) Emotional, practical, and informational unmet needs; (2) Lack of peer support on the physical and emotional well-being of UCCs in remote and rural areas; (3) Lack of supportive services in remote and rural areas, and (4) Access to flexible peer support. A summary of the findings of the included studies is in Appendix B.
Emotional, practical, and informational unmet needs
Six of the eight included studies focused on the emotional, practical, and informational needs of UCCs (Hudson et al. Reference Hudson, Quinn and Kristjanson2008; Jack et al. Reference Jack, Kirton and Birakurataki2011; Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024). The emotional needs perceived by UCCs were a lack of bereavement support (Jack et al. Reference Jack, Kirton and Birakurataki2011; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024), practical needs associated with symptom management such as constipation, nausea, and vomiting commonly experienced among individuals who are living with advanced cancer (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024), medication administration (Hudson et al. Reference Hudson, Quinn and Kristjanson2008; Jack et al. Reference Jack, Kirton and Birakurataki2011), pain management (Hudson et al. Reference Hudson, Quinn and Kristjanson2008; Jack et al. Reference Jack, Kirton and Birakurataki2011), and informational needs related to the process of a natural death and end-of-life care (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024).
UCCs stated that further emotional support was needed when cancer reached advanced stages among their loved ones, and also during bereavement, by both counselling services and their peers (Jack et al. Reference Jack, Kirton and Birakurataki2011; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023). The need for emotional support was due to the support provided by both peers and healthcare services being intermittent and UCCs perceiving this to be insufficient, as they dealt with the health deterioration of their loved ones on their own and without appropriate support (Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024).
UCCs also felt they needed to be adequately trained to undertake the practical skills, such as symptom management and medication administration for the individuals they were caring for. UCCs stated that due to a lack of regular training in symptom management (Perera et al. Reference Perera, O’Callaghan and Ugalde2021), and the burden of responsibilities undertaken by UCCs (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024), they found it difficult and felt overwhelmed to perform such tasks in a short period of time (Perera et al. Reference Perera, O’Callaghan and Ugalde2021). However, UCCs acknowledged the benefit of receiving regular training sessions in the form of structured programs led by healthcare staff and peers (Hudson et al. Reference Hudson, Quinn and Kristjanson2008) or trained volunteers (Jack et al. Reference Jack, Kirton and Birakurataki2011). Receiving training on medication administration led to patients being encouraged to adhere to their treatment (Jack et al. Reference Jack, Kirton and Birakurataki2011), and enhanced UCCs’ preparedness (p < 0.001) and competence (p-value = 0.01) among 54 participants (Hudson et al. Reference Hudson, Quinn and Kristjanson2008) in performing tasks independently.
As cancer approaches the terminal stages, pain management becomes a primary area of concern for UCCs. As a result, UCCs felt they lacked the necessary skills in effective pain assessment and management (Hudson et al. Reference Hudson, Quinn and Kristjanson2008; Jack et al. Reference Jack, Kirton and Birakurataki2011). UCCs who had not received adequate support from oncology healthcare staff experienced uncertainty about administering the correct doses of analgesics to their loved ones (Jack et al. Reference Jack, Kirton and Birakurataki2011). However, Hudson et al. (Reference Hudson, Quinn and Kristjanson2008) reported that UCCs who participated in peer support group sessions not only learned analgesic medication administration, but also benefited from non-pharmacological pain management such as relaxation techniques and massage, leading to an improvement in confidence associated with the provision of pain management.
The need for information, particularly associated with death and dying, was common among the studies. For example, Larocque et al. (Reference Larocque, Rietze and Heale2024) found that, similar to Perera et al. (Reference Perera, O’Callaghan and Ugalde2021), UCCs wanted to learn the signs of the dying process and how to provide end-of-life care. Moreover, over 40% of UCCs stated that they needed information on what to expect regarding their loved one’s cancer trajectory (Larocque et al. Reference Larocque, Rietze and Heale2024). The need for information regarding the process of death was due to individuals with cancer being more likely to die at home, where there is limited access to healthcare services (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024). While the study conducted by Ervik et al. (Reference Ervik, Andersen and Skirbekk2020) reported that 58% of 181 UCCs needed information regarding cancer caregiving from their peers, the findings did not clarify the type of information UCCs were seeking.
Lack of peer support on the physical and emotional well-being of UCCs in rural areas
Five of the eight papers reported that UCCs physical and emotional well-being and health status were adversely impacted due to the lack of peer support (Lockie et al. Reference Lockie, Bottorff and Robinson2010; Jack et al. Reference Jack, Kirton and Birakurataki2011; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024). Lack of support from peers, trained volunteers, friends, and other family members led to chronic fatigue, sleep deprivation (Lockie et al. Reference Lockie, Bottorff and Robinson2010; Larocque et al. Reference Larocque, Rietze and Heale2024; Winter et al. Reference Winter, McKenzie and Spence2023), increased emotional distress and anxiety (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023), as well as a sense of neglect and isolation (Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024) in UCCs residing in remote and rural areas.
Two studies reported that UCCs felt they were burdened by cancer caregiving responsibilities on their own (Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024), which led to sleep deprivation (Larocque et al. Reference Larocque, Rietze and Heale2024) and fatigue (Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024). The lack of sleep and chronic fatigue were due to UCCs being constantly concerned about their loved one’s condition (Winter et al. Reference Winter, McKenzie and Spence2023), and the potential for deterioration during the night (Larocque et al. Reference Larocque, Rietze and Heale2024). The limited access to volunteers for commuting to healthcare services led UCCs to drive long distances without consistent breaks, which was also associated with sleep deprivation and fatigue among UCCs (Lockie et al. Reference Lockie, Bottorff and Robinson2010).
Findings from Perera et al. (Reference Perera, O’Callaghan and Ugalde2021) and Larocque et al. (Reference Larocque, Rietze and Heale2024) indicated that UCCs with limited support from peers had fewer opportunities to express their feelings regarding the emotional burden and frustration arising from caregiving, which resulted in an increase in anxiety and emotional distress. The emotional distress was exacerbated during the imminent death of their loved ones (Jack et al. Reference Jack, Kirton and Birakurataki2011; Larocque et al. Reference Larocque, Rietze and Heale2024). Additionally, UCCs experienced a sense of isolation and neglect during the bereavement period as emotional support from peers and counselling services ceased following the passing of their loved ones with cancer (Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024).
Lack of supportive services in remote and rural areas
Six of the eight papers discussed a lack of peer support groups (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023), and oncology services, including professionally trained oncology staff and respite care (Jack et al. Reference Jack, Kirton and Birakurataki2011; Brazil et al. Reference Brazil, Kaasalainen and Williams2013; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023; Larocque et al. Reference Larocque, Rietze and Heale2024) for UCCs to seek informational, practical, and emotional support needs in remote and rural areas. In terms of oncology services, the literature found that there was a shortage of oncology specialists in rural and remote areas, and in 1 study leading the majority of UCCs (65.1% of 100 participants) to primarily rely on family physicians or general emergency rooms for either urgent situations or symptom management (Brazil et al. Reference Brazil, Kaasalainen and Williams2013). The lack of supportive services extends to respite care in rural and remote areas where there is a lack of oncology healthcare staff (Brazil et al. Reference Brazil, Kaasalainen and Williams2013; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024). Brazil et al. (Reference Brazil, Kaasalainen and Williams2013) reported that from 100 participants, approximately 11% of UCCs residing in rural and remote areas benefited from respite services. However, peers, including trained volunteers, played a crucial role in referring individuals with advanced cancer and their UCCs to hospice care by locating them, particularly for those residing “deep in the village” in very remote and rural areas, which are difficult for the hospice team to reach (Jack et al. Reference Jack, Kirton and Birakurataki2011). As a result, UCCs stated the need for reliable respite care services to take a break from caregiving and to manage their own physical and emotional well-being while ensuring their loved ones are well-cared for by oncology-trained healthcare professionals (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Larocque et al. Reference Larocque, Rietze and Heale2024). Moreover, the need for respite care increased during the COVID-19 pandemic due to extended lockdowns (Winter et al. Reference Winter, McKenzie and Spence2023).
Multiple studies found that not only are oncology services limited in remote and rural areas for UCCs to seek support, but there are also limited local community resources, such as peer support groups, for UCCs to seek support from (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023). UCCs reported a need for peer support groups tailored to rural contexts and advanced-stage cancer (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023). Similarly, Ervik et al. (Reference Ervik, Andersen and Skirbekk2020) added that from 181 participants, over 85% of UCCs requested to have access to peer support, particularly tailored to their rural context. The need for access to tailored peer support groups was due to the unique needs of individuals during advanced stages of cancer, and the challenges UCCs face, such as distance to nearest supportive services (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023). Perera et al. (Reference Perera, O’Callaghan and Ugalde2021) also suggested that tailored peer support for specific groups, such as Lesbian, Gay, Bisexual, Transgender (LGBT, non-binary sexuality) or non-English Speakers, exclusively in rural and remote areas, can help to address the unique needs of UCCs who are providing care for individuals at an advanced stage.
Access to flexible peer support resources
Two studies reported that UCCs can benefit from online resources and telephone conversations along with face-to-face sessions for UCCs who are caring for their loved ones at advanced stages of cancer at home in rural and remote areas (Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023). Winter et al. (Reference Winter, McKenzie and Spence2023) reported that UCCs would be supported in meeting their needs through telephone conversations and online chats with their peers, as they were not able to leave their loved ones “unattended.” However, despite the accessibility to substantial information on online platforms regarding cancer caregiving, UCCs may find it difficult to use such resources due to limited computer literacy or consider them to lack quality (Perera et al. Reference Perera, O’Callaghan and Ugalde2021). Conversely, Winter et al. (Reference Winter, McKenzie and Spence2023) and Perera et al. (Reference Perera, O’Callaghan and Ugalde2021) emphasised that as online platforms became more “user-friendly” in the post-COVID-19 period, the engagement through watching shared videos, downloading informational resources, and interacting with peers through chat functions among UCCs increased.
Despite the benefits of online peer support, 4 papers reported on the lack of access to flexible support groups that can be accessed at any time and from anywhere by UCCs. There was limited access to peer support groups located in rural and remote areas for UCCs who provided care for individuals with advanced cancer (Brazil et al. Reference Brazil, Kaasalainen and Williams2013; Ervik et al. Reference Ervik, Andersen and Skirbekk2020). As a result, 89% of UCCs requested to have easy access to peer support groups located in rural and remote areas to meet their peers in person on a regular basis (Ervik et al. Reference Ervik, Andersen and Skirbekk2020) to share their experiences (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Perera et al. Reference Perera, O’Callaghan and Ugalde2021; Winter et al. Reference Winter, McKenzie and Spence2023) and to acknowledge their role as a caregiver (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Winter et al. Reference Winter, McKenzie and Spence2023).
By attending face-to-face peer support sessions, UCCs were more likely to build a social network and receive a sense of acceptance as UCCs residing in remote and rural areas (Ervik et al. Reference Ervik, Andersen and Skirbekk2020; Winter et al. Reference Winter, McKenzie and Spence2023). Among 181 participants, approximately 54% of UCCs stated that the interaction between peers can close the gap left by a shortage of healthcare staff in rural and remote areas, where it might be difficult to access informational, practical, and emotional support (Ervik et al. Reference Ervik, Andersen and Skirbekk2020).
Discussion
This systematic review aimed to explore the perceived and/or received peer support needs of UCCs residing in rural and remote areas with a specific focus on informational, practical, and emotional needs. Key findings indicated that UCCs face multifaceted unmet needs throughout the advanced cancer stage. The findings indicated that due to the lack of supportive services, including peer support and oncology services, UCCs well-being was negatively impacted. Moreover, the results emphasised that it is crucial to have easy access to peer support for UCCs that is tailored to their circumstances and rural context to maximise the benefits.
The findings reflected that additional support is required from peers for UCCs to perform advanced tasks during end-of-life care, which can be challenging to manage on their own, especially when it might be beyond their knowledge and capabilities (Bijnsdorp et al. Reference Bijnsdorp, Pasman and Boot2020; Too et al. Reference Too, Lelei and Adam2023). The findings in similar studies highlighted that the need for caregiving support does not necessarily end with an individual’s death, but it also continues until UCCs have effectively coped with grief (Wen et al. Reference Wen, Chou and Chen2019; Ploukou et al. Reference Ploukou, Papageorgiou and Panagopoulou2023) to prevent complicated grief (Nielsen et al. Reference Nielsen, Neergaard and Jensen2017).
Providing care without support from peers or other social networks negatively impacts the well-being of UCCs living in remote and rural areas. Similar to this review, findings by Johnston et al. (Reference Johnston, Collins and Vicario2024) indicated that UCCs providing caregiving tasks alone, with limited access to peer support, are associated with negative health effects such as lack of sleep and fatigue. Conversely, Breuning et al. (Reference Breuning, Mählmann and Kerek-Bodden2024) reported that UCCs who engaged in peer support groups were less likely to be emotionally distressed and anxious than those who were isolated.
Previous studies support the finding in this systematic review that there is a need for respite care for UCCs residing in remote and rural areas (Nankervis et al. Reference Nankervis, Rosewarne and Vassos2011; Ugalde et al. Reference Ugalde, Blaschke and Boltong2019). Furthermore, Allicock et al. (Reference Allicock, Haynes-Maslow and Johnson2017) stated that peer support groups tailored to the rural context and advanced stages of cancer can provide UCCs with peers who have a firsthand understanding of the local community, a shared experience of cancer caregiving, and who are often more accessible and easier to communicate with compared to healthcare staff (Gunn et al. Reference Gunn, Weeks and Spronk2022). Although peers can help to address the gap in healthcare services in rural areas, they cannot substitute healthcare professionals (Kirby et al. Reference Kirby, Barlow and Saurman2016). Therefore, the presence of both peers and healthcare staff is essential to provide holistic support for UCCs residing in remote and rural areas.
While face-to-face peer support has been shown to help UCCs feel more prepared for their caregiving role through shared experiences (Kinnane et al. Reference Kinnane, Waters and Aranda2011), online peer support groups can be an alternative in remote and rural areas where it is challenging to have access to face-to-face support groups (Benson et al. Reference Benson, Oliver and Washington2020). Similar to this review, Rodler et al. (Reference Rodler, Buchner and Stief2021) found that older adults with limited computer literacy became more likely to join online peer groups when interfaces were simplified. However, McLoughlin et al. (Reference McLoughlin, Atherton and MacArtney2023) and Gunn et al. (Reference Gunn, Weeks and Spronk2022) both highlight that some caregivers still face challenges due to low confidence in using technology or poor digital infrastructure, especially in rural and remote areas. Attrill and Jalil (Reference Attrill and Jalil2011) also suggest that while online peer support provides rapid access to information, using social media lacks in quality and cannot be trusted in some circumstances. Therefore, combining face-to-face and telecommunication-based peer support may be the most effective approach to overcome access barriers in remote and rural regions (Lauckner and Hutchinson Reference Lauckner and Hutchinson2016).
Implications for practice
The findings of this systematic review indicate that closer collaboration is required between UCCs and healthcare professionals to establish and maintain reliable peer support groups for unpaid caregivers of individuals with advanced cancer. These peer support groups should aim to address UCCs unmet needs in a specific stage of cancer within a rural context and in a readily accessible way. While the accessibility to peer support should be facilitated by combining face-to-face sessions with ongoing online or telephone-based interactions, training should be provided for UCCs who have limited technology literacy to benefit from such support in rural and remote areas.
Recommendations for future studies
Future studies are recommended to focus on developing a comprehensive practical care support model for UCCs to address their current needs within the context of rural and remote areas. It is also recommended that potential methods of delivering support be considered to ensure an effective, practical, and accessible support system in these areas. It is worth noting that cultural, socioeconomic status, and healthcare delivery framework factors should be considered to ensure models of care are adaptable and feasible in different rural contexts. Additionally, it is also recommended that future studies also consider cultural diversity among UCCs to reflect how cultural influences can affect peer support needs.
Strengths and limitations
To our knowledge, this is the first systematic review conducted to explore the perceived and/or received peer support needs of UCCs residing in rural and remote areas with a specific focus on informational, practical, and emotional needs. It has been identified that both healthcare staff and social networks are integral parts of a supportive system for UCCs. Previous reviews have mainly focused on the unmet needs of UCCs; however, the needs of those who were providing care for individuals with advanced cancer in rural and remote areas were neglected. A limitation of this systematic review is that the number of primary studies included was 8, which hindered the authors from exploring cultural diversity and reflecting differences across different sociodemographic groups.
Conclusion
This systematic review underscores perceived and/or received peer support in meeting UCCs informational, emotional, and practical needs residing in rural and remote areas. Peer support is valued in fostering a sense of acceptance and sharing similar experiences and meeting the complex cancer caregiving needs of UCCs during the advanced stage of cancer. It was also found that the significance of collaboration between healthcare systems and local communities to provide support, and how a lack of peer support may negatively impact UCCs’ overall well-being in rural and remote areas. Furthermore, the review highlighted the importance of combining face-to-face sessions, telephone conversations, and online support groups to facilitate the delivery of peer support.
Funding
No funding was provided for this systematic review.
Conflicts of interest
The authors report no conflict of interest in this systematic review.
Appendix A: MMAT Quality Appraisal Checklist for Quantitative Descriptive Studies
✓ (Yes), ✗ (No), ? (Cannot tell)
S1. Are there clear research questions?
S2. Do the collected data allow to address the research questions?
1.1. Is the qualitative approach appropriate to answer the research question?
1.2. Are the qualitative data collection methods adequate to address the research question?
1.3. Are the findings adequately derived from the data?
1.4. Is the interpretation of results sufficiently substantiated by data?
1.5. Is there coherence between qualitative data sources, collection, analysis, and interpretation?
✓ (Yes), ✗(No), ? (Cannot tell)
S1. Are there clear research questions?
S2. Do the collected data allow to address the research questions?
5.1. Is there an adequate rationale for using a mixed methods design to address the research question?
5.2. Are the different components of the study effectively integrated to answer the research question?
5.3. Are the outputs of the integration of qualitative and quantitative components adequately interpreted?
5.4. Are divergences and inconsistencies between quantitative and qualitative results adequately addressed?
5.5. Do the different components of the study adhere to the quality criteria of each tradition of the methods involved?
✓ (Yes), ✗ (No), ? (Cannot tell)
S1. Are there clear research questions?
S2. Do the collected data allow to address the research questions?
4.1. Is the sampling strategy relevant to address the research question?
4.2. Is the sample representative of the target population?
4.3. Are the measurements appropriate?
4.4. Is the risk of nonresponse bias low?
4.5. Is the statistical analysis appropriate to answer the research question?
✓ (Yes), ✗ (No), ? (Cannot tell)
S1. Are there clear research questions?
S2. Do the collected data allow to address the research questions?
3.1. Are the participants representative of the target population?
3.2. Are measurements appropriate regarding both the outcome and intervention (or exposure)?
3.3. Are there complete outcome data?
3.4. Are the confounders accounted for in the design and analysis?
3.5. During the study period, was the intervention administered (or exposure occurred) as intended?
Appendix B
Note: Caregiver’s Burden Scale in End-of-Life Care = CBS-EOLC; Multidimensional Scale of Perceived Social Support = MSPSS; and Eastern Collaborative Oncology Group = ECOG; Caregiver competence scale = CCS; Preparedness for caregiving scale = PCS; Family inventory of need = FIN; Rewards for caregiving scale = RCS; Social Support Questionnaire = SSQ; Brief assessment scale for caregivers = BASC; Life orientation test = LOT; COMPET = competence; Distress Thermometer short screening tool = DT; Carer Support Needs Assessment Tool = CSNAT.
Open access
