What is known about the role of rural-urban residency in relation to self-management in people affected by cancer who have completed primary treatment? A scoping review

The methods for this review were based on Arksey and O’Malley’s [37] five step framework for scoping reviews: (1) identifying the review question; (2) identifying the relevant studies; (3) selecting the studies; (4) charting the data; and (5) collating, summarising and reporting the results. Each individual step is reported below. The adoption of this methodological framework ensured that the review process was methodical, rigorous and transparent [38].

A total of nine articles were included in the review [39‐47]. The studies were published from 2011 to 2018 and conducted in the USA (n = 6), Australia (n = 2) and Canada (n = 1). Out of the nine articles, four used qualitative methods, four used a mixed methods design and one was conducted using solely quantitative methods. Five of the studies were with people affected by breast cancer and the other four included participants who had been affected by a range of cancers.

A qualitative study with African American women from rural Alabama who had been affected by breast cancer (n = 15) [39] highlighted the need for social support from family and friends, as well as healthcare providers. The study highlighted a lack of survivorship education and support in their area. Furthermore, participants identified their needs for information about survivorship self-management, notably around managing treatment-related side effects. Within this context, spirituality and religion were crucial to coping with a cancer diagnosis and the effects of its treatment.

Further qualitative research [40] utilising semi-structured interviews with adults from a rural state in Western America who had completed treatment for cancer (n = 20) found four factors (cognitive, affective, interpersonal and symptomatic) that informed self-monitoring which subsequently facilitated a sense of control and self-advocacy. Self-monitoring can be considered a specific self-management strategy that involves patient awareness of thought processes, activities and physical symptoms in addition to the measuring, observing, recording and tracking of signs and symptoms. In terms of cognitive factors, participants collected and critically appraised the information that they were given. Some participants found note taking and recording information helpful to keeping track of and managing their situation. Information came from a range of sources such as health professionals, family, friends, support groups and the internet. Affective factors involved feelings of fear, anxiety, frustration, uncertainty and helplessness. However, these negative emotional responses facilitated a desire to learn about cancer and how best to manage it. Interpersonal relations were vital to learning about cancer, treatment side effects and self-management in general. For some, these were limited to interactions with only health professionals whereas for others, these extended to reliance on friends, family and support groups. Finally, the symptomatic factor refers to adverse treatment side effects, and participants would keep track and document these in the hope of minimising or managing them better in the future. For the most part, these rural participants reported ‘active’ coping strategies as opposed to ‘passive’ although there were no comparisons made to those from urban areas.

A recent feasibility study [41] highlighted that it is practical to recruit and retain people affected by breast cancer from rural areas for online focus groups and testing of a web-based education and self-management programme. The study is evidence that rural women are willing to participate in online focus groups and use web-based self-management support. Indeed, this was endorsed as an appropriate self-management tool for managing emotional distress, and [41] the authors maintain that knowing this is important to overcoming negative perceptions about rural internet use and this could be a suitable strategy to improve rural mental health disparities.

Further mixed methods research [42] with young women (under 50) who had a diagnosis of breast cancer (n = 105) where participants were randomised to two groups (online support group with psycho-education compared with self-help psycho-education), indicated that women who were from semi-rural and rural areas benefited from an online support group with psycho-education more so than those from urban areas. Moreover, the online support group that was professionally led supported self-management and facilitated focused and meaningful discussions that reduced illness-related stress. Notably, the study was also successful in outreach efforts to rural and semi-rural locations that normally lack psychosocial services and self-management support compared with their urban counterparts.

A qualitative study by [43] examined a yoga intervention as a tool to facilitate self-management with a sample of rural Australian women (n = 15) who had experienced lymphoedema as a consequence of treatment for breast cancer. The participants were highly motivated as evidenced by their high level of compliance regardless of having to travel for an hour and a half to attend the yoga sessions. However, the small sample size raises questions as to whether this would be replicable to a larger population. That said, holistic therapies such as yoga offer a range of practices that can be tailored according to the needs of the individual. Participants reported improved well-being and increased awareness of their body, as well as improved physical, mental and social functioning. The intervention also provided a place for them to share experiences with their peers, and the authors argue that yoga has the potential to augment and provide additional benefit to current self-management and treatment practices for women with breast cancer-related lymphedema.

Research into the delivery and development of the Reach Out to Rural Breast Cancer Survivors initiative that was delivered within a rural setting in four rural counties in Northeast Alabama in the USA [44] highlighted four major concerns through content analysis of discussions with sixteen women who were post-treatment. The first major concern was self-management in survivorship. The other three major concerns were fears around being lost in transition, preferences for support and concerns about cancer surveillance and health. The authors then identify a further nine themes from the data that they suggest related to self-management concerns: (1) fatigue, (2) pain, (3) depression, (4) lymphedema, (5) bone health osteoporosis, (6) hair loss, (7) sexual function, (8) hot flashes and menopausal symptoms and (9) comorbidities. These themes were then used to inform the content of the Reach Out intervention. For example, practical self-management tips on how to locate local resources were integrated into the programme, as well as specific tips to address sexuality and intimacy issues.

A pre-tested survey to ascertain general and mental health, quality of life and demographics with rural people who were personally diagnosed with cancer and was not undergoing any active treatment (n = 29) , and their partners (n = 15) [45] showed that over half of those with a personal history of cancer were at risk for depression and 34% reported some type of psychosocial problem that required assistance, such as management of treatment-related side effects or complications of treatment, emotional support or the impact of cancer on social relationships. Although these findings should be interpreted with caution given the small sample size, the authors suggest that those in rural areas are likely to require a team approach to meeting psychosocial needs.

A qualitative study (n = 25) on experiences of follow-up care (medical and psychosocial) following breast cancer treatment for women living outside major Australian cities [46] highlighted that there was limited access to medical follow-up care, as well as psychosocial and lifestyle support programmes in rural settings. Interestingly, lack of community-based support programmes was a key concern, and some participants were given information about support that was not available in their areas. Several participants wanted peer support with other women affected by cancer; some were proactive in sourcing this in the local area, using the telephone and internet to access this. Furthermore, there should be greater co-ordination of care between health professionals to improve communication and reduce the burden on both, the patient and the medical system.

Finally, a mixed methods study compared the impact of cancer in rural and urban-dwelling adults in two regions of the Pacific Northwest [47] using a questionnaire (n = 132), and in-depth interviews (n = 19) showed statistically significant differences between rural and urban when it comes to differences in body concerns, worry, negative impact and employment concerns. The interview data indicated further differences in relation to accessing healthcare, care co-ordination, community, thinking about death and dying, public/private journey and advocacy. Rural participants tended to advocate for themselves, their diagnosis, survivorship and for improved healthcare in their communities. The advocacy emerged as seeking a second opinion, accessing support resources, asking questions and seeking answers and fighting for their financial and employment rights. The rural participants in particular engaged with community advocacy by fundraising, volunteering with survivorship organisations and speaking publicly about survivorship issues.

Firstly, none of the studies that met the eligibility criteria offered direct insight into self-managing cancer within a rural-urban context in the UK. Similar to much of the broader literature on survivorship and geography [30, 35, 48‐50], the included studies were conducted in the USA, Canada and Australia. Whilst the studies that were included in this review shed light on some of the self-management experiences within a rural-urban setting, they are from countries with different healthcare systems and services in comparison with the UK, thus warranting further investigation in a UK setting. Despite the increasing body of work that explicitly focuses on self-management and cancer within a UK context [13, 17, 18, 51‐54], there are no studies that have reported data on rural-urban residency in relation to this. Equally, research comparing outcomes between rural and urban people affected by cancer has tended to focus on the post-diagnosis stages, as well as survival rates, and has yet to examine the influence of residency on longer-term survivorship outcomes, such as self-management post-treatment.

Only two of the included studies collected data from participants in urban areas, as well as rural [42, 47]. Whilst these two studies identified some of the similarities and differences with rural and urban populations in relation to ‘self-management’, they do not explicitly focus on ‘self-management’ as one of the primary variables under investigation. Indeed, self-management studies that compare between rural and urban with people affected by cancer are non-existent within the UK and international literature. With that in mind, researchers in psychosocial oncology should be encouraged to collect both quantitative and qualitative data on rural-urban residency to enhance their analyses. Whilst the studies in this review focus directly on rurality signpost to the perceived differences with rural and urban living when presenting their background and context, they do not collect and analyse data from urban populations in their own study which limits the extent to which we can consider these findings unique to the rural setting without a comparator group. Some of the existing American cancer research that has compared between the two on mental health [55], health status and health behaviours [35, 50] have used official statistics to categorise and define rural-urban residence, and other researchers, where appropriate, should be supported to do the same. In fact, utilising the same methods for defining and measuring rural-urban status would support comparison between researchers, at the very least, on a national and regional level and promote wider collaboration in the field. Furthermore, interventions need to account for geography and the specific traits of rural and urban populations; therefore, cancer survivorship scholars should be encouraged to take note of this when designing and implementing interventions.

With regard to the findings from the studies themselves, they identified the salient needs of those from rural areas and that emotional management seems to be a significant concern [45]. This is not surprising given that geographic and emotional isolation is often associated with rural living as seen in some of the wider literature [56, 57]. However, in contrast, it is argued that survivorship experiences are similar regardless of rural-urban residence with the exception of access to specialised survivorship services and resources being the primary difference, as well as a considerable challenge for those in remote locations [44]. A potential solution could be the use of IT and as digital technologies and e-health applications have the potential to support and address needs with rural populations who have been affected by cancer [46]. That said, for this to work, it would be dependent on internet access which can still be limited (or even non-existent) in very rural and remote locations. Indeed, recent work in the UK [58] with people affected by breast cancer suggests that an e-health app could be successful in facilitating peer support and coping strategies. At the same time, it has been shown that social networking does not always provide added benefit, and consideration needs to be given to what stage of the cancer journey this is delivered to the individual [4]. With that in mind, if future time and financial resources are to be invested in the design and utilisation of digital technologies to support health behaviours and self-management, academics and health professionals have a duty to ensure that these are designed and tailored to the needs of both rural and urban populations. Whilst this review was conducted prior to the global pandemic, COVID-19, some people affected by cancer might now feel particularly vulnerable, especially when confined to their homes as a consequence of cancer or other comorbid conditions. It is therefore likely that demand for digital support will increase regardless of geography, where people can learn from professionals and peers without the need for face-to-face contact.

In one study exploring the differences and similarities between rural and urban living [47], the findings challenge the widespread assumption about the perceived negative impact of rural living on health outcomes. Notably, some of the wider literature reinforces a range of characteristics belonging to rural communities that have the potential to benefit people affected by cancer [22, 23]. Perhaps, not surprisingly, a common theme in the literature is ‘community’ and research shows that access to healthcare might not be the most salient concern when it comes to the survivorship experience. Social and community support has specifically been accounted for in a framework for recovery of health and well-being in cancer survivorship [15], and it has been posited that community support can differ depending on where an individual lives [22]. This study sheds light on the role of empowerment in rural communities and future researchers in the field should take note. However, the majority of their sample were female and had been affected by a breast cancer diagnosis where there might be more resources available to support recovery and self-management. Additionally, females tend to be more socially active and to seek other forms of social and emotional support compared with males. Nonetheless, the findings highlight some interesting traits of rural communities in relation to cancer survivorship that warrants further data collection with more diverse samples.

Whilst the methods and results from the scoping review identified a gap in the extant literature, notably, that no studies offered direct insight into self-managing cancer within a rural-urban context in the UK, the databases chosen ensured that a wide range of literature in relation to nursing, health and social care, mental health and the behavioural sciences was searched. However, the review was not without its limitations and the search strategy could have been extended to include additional databases such as the Rural and Remote Health Database via Informit Online, although the host institution did not have access at the time of the research. The grey literature was not searched as one of the primary objectives was to map the peer-reviewed academic research in this area. Although to gain a deeper understanding of the field, future reviews should consider exploring the subject-specific grey literature. Given that this was not a full systematic review, the review protocol was not registered; however, this could have allowed for initial peer review of proposed methods and increased transparency and awareness of the research. Finally, the search terms could have been extended to include related terms such as ‘self care’, ‘self help’, ‘self education’ and ‘patient education’, thus ensuring a more comprehensive and thorough search of the academic literature.

If rural and non-rural populations define their health in different ways as some of the literature suggests, then efforts to support self-management in both populations will need to be better informed by robust evidence given the increasing focus on patient-centred care [59]. It is therefore important to consider if residency can be a predictor of self-management, as well as what acts as a barrier and/or facilitator to self-management; the findings can then be used to inform support that is delivered to people affected by cancer and ensure that it is tailored to population needs in line with geography. Future studies with people affected by cancer should consider collecting data on rural-urban residence where appropriate. This can then be utilised to inform interventions and support based on the needs of both rural and urban populations.