Enablers and barriers to accessing self‐management support services for those living with and beyond cancer: A qualitative study using the theoretical domains framework

Supporting those living with and beyond cancer to self‐manage their health can optimise health‐related quality of life and reduce symptom burden. Self‐management support (SMS) programmes have been shown to be effective, but uptake is often low. This qualitative study aimed to identify experienced and perceived enablers and barriers to accessing SMS services among those who had completed primary cancer treatment and were living with and beyond cancer.

Self-management is an "individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition". 1 It represents a shift from patients as passive recipients of treatment to individuals who are partners in managing their health. 2Self-management support (SMS) is the provision of interventions to increase patients' skills and confidence in self-managing. 3 Delivery of SMS is now a priority in cancer care delivery 4 and one approach to delivery is through structured programmes. 5One prominent SMS programme for people living with and beyond cancer is called Cancer Thriving and Surviving. 6,7The programme, which is based on the Stanford Chronic Disease Self-Management model 8 draws on social cognitive theory.It is delivered by a peer leader and health care professional via 2.5-h long group sessions over 6 weeks in a hospital or community setting.[8] Evidence suggests that SMS programmes can improve health related quality of life among those living with and beyond cancer. 50][11] For example, as part of a clinical trial only 45% of eligible cancer survivors agreed to participate in a web-based SMS intervention. 11Uptake or reach of an intervention among the target population is necessary for improved clinical and service outcomes. 12is is the focus of implementation science which aims to increase the uptake of effective interventions into routine healthcare.
Patient-level variables associated with higher use of psychosocial support include higher physical and emotional needs, positive attitudes about support and a desire to improve coping, and demographic factors such as younger age, being female and white. 10,13,14nversely, fears or stigma towards and uncertainty about psychosocial services can be barriers to use. 15Evaluation of an online SMS intervention found reasons for non-use included wanting to leave the period of illness behind, not experiencing symptom burden, lack of perceived need for supportive care, limited time and perceived lack of sufficient internet skills. 11These quantitative studies provide limited insight into the issues underlying, for example, positive attitudes to SMS.
Previous qualitative research has explored perceived barriers and enablers of self-managing among individuals living with and beyond cancer [15][16][17][18][19] but less on factors which act as barriers and enablers of accessing SMS services.Understanding these may help in developing strategies to increase uptake.While a synthesis of 13 qualitative studies identified some potential barriers to accessing SMS programmes, including practical issues and personal obstacles such as low perceived need and reluctance to talk about cancer experiences in a group setting 20 these have not been explored in depth.The use of theory or theoretical frameworks, central to the field of implementation science, can help guide understanding of factors influencing uptake of evidence-based interventions. 21However, little theory-informed research assessing barriers and enablers of accessing SMS programmes has been conducted to date.The Theoretical Domains Framework (TDF) is an example of a framework commonly used in implementation science to guide the identification of factors that may influence behavior such as accessing SMS, and can be used to underpin the development of behavior change interventions. 22,23We selected the TDF because it covers the breadth of relevant constructs outlined in different self-management theories 24,25 and using a single theory could have resulted in some constructs being missed. 26A strength of the TDF is that it is a framework developed from a synthesis of 33 theories of behavior change grouped into 14 'theoretical domains' for identifying and categorising determinants. 22Therefore, in this study, using the TDF we identified barriers and enablers of accessing SMS services among those living with and beyond cancer.

| Design
A qualitative research design was used, and data were collected using individual semi-structured interviews.We report our methods according to the Consolidated Criteria for Reporting Qualitative Research. 27

| Study setting
This study was conducted in the Republic of Ireland.Oncology services are delivered in public hospitals run by the Health Service Executive (HSE) or are state-funded.Ireland also has private healthcare hospitals, offering oncology services which receive no state funding.
Community cancer support centers which operate in the charity sector are a key ancillary service, delivering psycho-social support and SMS. 28,29In 2016, the HSE introduced Cancer Thriving and Surviving, delivered nationally through the community cancer support center network and hospitals. 6In this study we were interested in understanding the factors that act as barriers or enablers to accessing SMS services across hospitals and community cancer support centers.As Cancer Thriving and Surviving is also delivered in community cancer support centers we also report barriers and enablers to engaging with these organisations for SMS.2022-196).The study procedure and recruitment materials were approved.

| Participants and recruitment
Adults living with and beyond cancer (aged 18 years or older) who had finished primary curative treatment (surgery, radiotherapy, and chemotherapy) were eligible to take part.Anyone who had attended or not attended a SMS programme were eligible to take part.Anyone undergoing maintenance hormone therapy or active surveillance was eligible.Exclusion criteria included individuals who had a cancer diagnosis in childhood, anyone unable to provide verbal or written consent and individuals undergoing palliative care requiring hospitalisation.Participants were recruited through community advertising, cancer advocacy groups and social media via emails and posters.The advertisement stated that the study aimed to find out how those living with and beyond cancer in Ireland can be supported to access and take part in SMS programmes.As SMS may not be a term recognised by everyone the study advertisement stated that we were interested in understanding people's experiences of cancer survivorship care and support to manage the symptoms, and physical and psychosocial consequences following cancer diagnosis and treatment.It also provided an explanation of what we meant by SMS programmes and stated that individuals who had and had not taken part in a programme were eligible.The study advertisement included an online link to a form where interested individuals submitted their contact details.NP then contacted them to assess eligibility, and explain the project aims and study procedures.Those who agreed to take part were sent a participant information sheet and consent form.Consent was confirmed prior to the interview.Parallel to this study, another qualitative study exploring barriers of and enablers to implementing SMS, led by NP was on-going.Some of these participants were people living beyond cancer who previously took part in SMS and provided insights into enablers of accessing a SMS programme.Therefore, data from these interviews were included in this analysis.Informed consent was obtained from these participants prior to the interview.Sample size was guided by the principles of information power rather than saturation which proposes that the more information the sample holds, the lower number of participants required. 30Guided by information power we deemed that a smaller sample would be required, given the narrow aim, sample specificity, use of an established framework and quality of interview dialogue and interview length. 30

| MATERIAL
The interview topic guide aimed to explore perceived and experienced enablers and barriers to accessing SMS (Supplementary material 1).Questions were structured around the domains of the TDF.
The topic guide was reviewed by five individuals with lived experience of cancer who are part of this project's patient and public panel contributors.This panel includes four people living with and beyond cancer and one informal caregiver.The topic guide was also piloted prior to data collection with one member of this panel and was refined accordingly.This pilot interview was not included in the final sample as members of the patient and public panel were not eligible for inclusion.The topic guide is available in supplementary material 1.

| Data collection
All interviews were conducted by NP, a radiation therapist with experience of qualitative data collection, over telephone or by videocall using Microsoft Teams between August 2022 and April 2023.
Only NP and the participant were present during the interview.Interviews were recorded and transcribed verbatim and anonymised.
Transcripts were not returned to participants for comment or correction.Participants did not know the interviewer prior to interviews and were aware of the interviewers' role in conducting the research.

| Analysis
Data analysis followed the principles of framework analysis. 31First, transcripts were coded inductively based on participants' reported experiences of accessing SMS.Then statements related to factors that enable or inhibit access were coded and mapped deductively to a TDF domain using published domain definitions. 32Codes were classified as a barrier or an enabler under each TDF domain.At times it was difficult to code to one TDF domain.For example, there was often overlap between the domains 'goals' and 'social role and identity' and between the domains 'beliefs about consequences' and 'emotion'.Three transcripts were second-coded independently by MC, a psychologist with experience of the topic of SMS, qualitative data analysis and using the TDF.NP and MC met regularly to discuss any discrepancies and agreed on the most appropriate TDF domain for certain codes to develop an analytical framework.This framework was refined, and this was used to code the remaining interviews independently by NP.Coding was managed manually, and related codes were grouped together to form categories and then summarised in a matrix using Microsoft Excel.Through constant comparison, connections between categories and TDF domains were identified to generate themes.These themes were reviewed by all members of the research group.Themes were also presented to the project's patient and public panel who provided feedback and comments on the analysis.Themes with sample quotations are presented in greater detail using the corresponding code categories and TDF domain (Supplementary material 2).Themes and relationships between TDF domains are also presented as a thematic map in Figure 1.
-3 of 9 Twenty-eight people registered their interest.One person did not respond when contacted and another did not meet the inclusion criteria as they had a cancer diagnosis in childhood.In total 26 people living with and beyond cancer were interviewed, 10 of which were included from the parallel study.Thirteen had completed a SMS programme already.Interviews lasted approximately 50 min (range: 25-120 min).Demographic data collected is reported in Table 1.

| Themes
Six themes were identified which explain the factors that act as barriers and enablers to accessing SMS.These mapped to 11 of the 14 TDF domains.No themes were mapped to the domains 'optimism', 'reinforcement' and 'behavioral regulation'.Themes are described below with supporting quotes and the participant's gender and cancer type.

Theme 1 Social influences shape knowledge, attitudes and readiness
Participants largely described lack of knowledge and limited heath provider guidance about available SMS.However, participants who had accessed SMS spoke about how healthcare provider advice and signposting provided knowledge of services and programmes and often subsequent participation.Participants described healthcare providers as a trustworthy and credible source of information which can encourage cancer patients to take part in a SMS programme.
And I think if it comes from the medical side patients would take it a little bit more seriously (Female, Multiple Myeloma).
Often participants described how they found out about supports through informal networks and word of mouth and from people living with and beyond cancer who work in a volunteer role with SMS services.While participants described how there can be a reluctance to engage in a SMS programme, they highlighted that social influences through peers sharing experiences may address this barrier.This could be in person or through promotional literature including videos.For those who may lack confidence in engaging with SMS programmes or community cancer support centers having someone from the service or health professional making contact in the first instance was an enabler.Also, having someone else attending support alongside them was suggested.Participants described how peer-peer support or peer support groups can enable someone to engage with a F I G U R E 1 Qualitative themes linked to the Theoretical Domains Framework (TDF) domains.If anyone has cancer, then they're spoken of as battling cancer.And I think that's the kind of language that I don't think helps any of the patients or their families or anybody else…, but that kind of language then also has a little bearing on my view of the (charity) for example… I don't gravitate towards those organisations to help me in my journey with cancer (Male,

Multiple Myeloma).
Linking with the TDF domain 'emotion', some participants described feeling guilty about availing of free support services that operate in the charity sector, which may have limited resources.
Some participants also described viewing charity organisations for people who are in a vulnerable position and therefore did not identify as someone who would use these services.A perceived barrier was the perception of mental health in general and that this can be a factor that influences decisions around engaging with SMS programmes and community supports.While some did not describe hesitancy in seeking psycho-social support, others perceived stigma to be a potential barrier.

Theme 3 Alignment of SMS with intentions, goals, and readiness
Participants' intentions to be proactive and in control of their cancer was an enabler and influenced their decision to join a SMS programme after treatment completion.Some participants spoke about how self-management aligned with their goals of surviving and helping themselves, and this motivated them to engage with a programme.While some participants were motivated and determined to self-manage, participants highlighted that a barrier can be the stage at which an individual is at during their cancer journey and if they feel ready to engage.Participants described experiencing ongoing mental and physical fatigue which can be a barrier to participating.Participants also spoke about how initially they were focussing on the diagnosis and treatment and not the survivorship aspect.With competing priorities, an individual's goal is often to understand the diagnosis and complete treatment and not SMS.Following completion of primary treatment participants described how it takes time to transition into the survivorship period and to feel ready to access SMS services.Therefore, having information about available support and knowing they can avail of support when they feel ready was highlighted as important.Some participants described lack of knowledge around when it is the appropriate time to seek support.
One participant described how she was coming to the end of her treatment and questioned whether it was too late to access support.
I'm at the end of treatment…but there's a part of me going.Oh, is it too late?Have I missed the window?
Some participants differentiated between their personal readiness to move on and their families, describing difficulty in asking for help towards the end of their treatment and initiating contact with support services.One participant described how it can be difficult to ask for help towards the end of treatment when friends and family are moving on.
It's very hard as well, to ask for help, to say that you need help, those programmes are very much at the end of treatment, when, in many ways friends and family are nearly starting to move on (Female, Breast cancer).

Theme 4 Fear and lack of confidence around accessing support
Participants described how the emotional impact of a cancer diagnosis can lead to experiencing fear and lack of confidence, which PALLIN ET AL.
-5 of 9 limits their ability to initiate contact with SMS services.One participant described hesitancy around asking questions out of fear, or fear of being turned away due to not meeting eligibility criteria.Therefore, ensuring programmes are accessible is important.Participants described feelings of lack of confidence and fear around initiating contact with SMS services and in particular community cancer support centers, and asking for help and explaining they have cancer.
Participants also perceived a lack of confidence and fear in engaging in a group context as a barrier and disclosing and sharing experiences of cancer as part of a SMS programme.
Not everybody can go into a group on their own, you know, and sit there with people they don't know and talk about their cancer (Male, Prostate Cancer).
Under the domain 'beliefs about consequences', anticipated loss of privacy in engaging with community support was highlighted as a barrier.Some participants also described hesitancy and fear around engaging in groups that may be a negative space, for example, groups that may involve other people sharing upsetting stories.

Theme 5 Accessibility of SMS services
Participants opportunity to engage with SMS services was influenced by where it was delivered and if easily accessed, as well as the opening hours and timing of the programme.Distance to the venue and limited access to travel were identified barriers.Some participants described how work commitments are a barrier to attending SMS, when programmes are delivered during working hours.While participants noted that online delivery enables access, particularly for those living in rural areas or who cannot travel, some participants also described how limited computer skills may hinder ability to participate.Also, many described how they would not engage with an online programme because they find it impersonal.
I don't like the medium.It's cold (Male, Multiple Myeloma).
Participants described how SMS and community support services may not be accessible to everyone and there is less uptake among certain groups.For example, participants described how fewer men seemed to engage with SMS programmes and community cancer support centers.Also, one perceived barrier was that services may not be accessible to those from non-Irish nationalities.In addition, participants perceived not being able speak English and one's literacy levels as barriers to accessing SMS programmes.Some participants also perceived that supports and community services are often more accessible to middle class communities and the need for improving accessibility for other groups.
Most of the supports that I think are there are very accessible to middle class people who understand the benefits of them.How do we reach out to people who are not as comfortable with that …. we need to be very careful about how you target and how you make people aware, you'd have to adjust for different types of groups, both Irish and non-Irish, or, you know, other languages (Female, Breast cancer).

Theme 6 Advertising and ability to remember and selectively focus on information
The importance of advertising available SMS was emphasised by participants.Participants described how there was often a requirement for them to source information, however described limited information available online.One participant described how they found information online about SMS but had to 'search through a load of stuff to try and get it' (Female, Cervical cancer).To increase uptake some suggested advertising to other 'non-cancer' setting such as college campuses and connecting out into the community.Participants also highlighted lack of understanding of the term self-management as a potential barrier to engaging or continuing with participating in a programme.To address the barriers surrounding stigma towards Psycho-Oncology services advertising SMS in a way that people don't perceive it as counseling was suggested.Also advertising SMS to increase fitness could encourage more men to access services.
I think there has to be a way of marketing it, that it doesn't just seem like another psychology type session, if you wish, but is maybe more about getting your fitness back or exercise, fatigue management, but also your fitness through dealing with life and uncertainty and etc…So men might be more motivated by that if the marketing around those things was different (Female, Breast cancer).
The importance of providing leaflets was noted, both as a source of information and as a prompt and cue.However, participants described how their ability to process information can be limited while undergoing treatment due to feeling overwhelmed, and this is a barrier to noticing or absorbing information on leaflets.As well as remembering what healthcare providers tell them about programmes.The provision of written information along with in-person delivery of information can help address this.Participants recommended frequent reminders about available support, as well as providing information in a medium like a video may help make information more salient and memorable.Particularly, as participants also described that limited attention is given to noticeboards.

| DISCUSSION
This qualitative study explored the factors influencing decisions around accessing SMS services among individuals living with and beyond cancer.Lack of knowledge of available SMS was a barrier, with participants describing limited information and guidance received from their healthcare provider.Participants who were aware of services or had engaged with a SMS service described how healthcare provider and family or peer support were influential.
Reluctance to initiate contact or engage with SMS services appeared to be driven by attitudes and emotion.To facilitate access, advertising, social support and in person delivery of information were recommended.Ensuring information is visible, accessible, and presented in a way that considers individuals' attention and memory processes is also important.
Practical issues, such as travel-related restrictions and inconvenient time of programme delivery were highlighted in our study, consistent with other research. 20Delivering SMS programmes away from busy hospital settings could address this.Also, while participants in our study recognised that online SMS interventions can overcome some of these barriers, most indicated that in person delivery is preferable.As reported by others 11 participants also noted that limited computer skills are barriers to using online programmes.Online and digital delivery may be a more efficient way of delivering SMS at larger scale, therefore further research could explore how to improve uptake of digital programmes.Also, delivering SMS programmes across different locations could enhance access.Improving accessibility of services for people across socio-demographic groups and nationalities was equally highlighted as important.Those who participate in group SMS programmes tend to be more affluent and educated [33][34][35] as noted by participants in our study.Our findings point to the need for advertising strategies that are acceptable across groups to increase uptake.Implementation strategies may need to be developed that include components that build partnerships and connections with communities, enhance cultural competence, raise critical consciousness, and reduce language barriers. 36r study adds to the literature that social influences through healthcare provider and peer support are key to supporting others in self-management. 37This is relevant given that our findings highlight that patients may be afraid to ask questions about support.In line with Coffey et al. 20 our findings also suggest a barrier to engaging with a SMS programme is hesitancy in sharing experiences of cancer in a group setting.Also, participants described how fear can limit someone's confidence and ability to initiate contact with SMS services.
Some suggested that other people living with and beyond cancer sharing positive experiences of SMS could address this.Attending with family members or friends, or healthcare providers sharing contact details with SMS services was also suggested.
Lastly, attitudes towards SMS services and community cancer support centers was a factor.For example, stigma is often a barrier to acceptance of mental health service use 15 and in our study participants described how stigma and attitudes surrounding Psycho-Oncology may be a barrier to availing of SMS services.Self-identity can also influence attitudes and behaviors 23 as described by participants.
Illness representation, described as part of Leventhal's self-regulatory model 24 focuses on how one experiences and mentally frames living with a disease.In our study low perceived need for utilisation appeared to be influenced by factors reflective of illness representation.Individuals' perception of the non-severity of their cancer diagnosis led to some deeming that they may not be as deserving of participating in a programme.Also, how some people living with and beyond cancer view their diagnosis may conflict with SMS services' goals.This may shape low perceived need or desire to engage with these services.

| Clinical implications
The study findings can guide tailored approaches to increase engagement with SMS services by building on enablers and addressing barriers.Effective information provision by healthcare providers may be required to strengthen patients' self-efficacy to engage with SMS, foster patients' positive attitudes toward SMS and minimise fear towards engaging with services.Organisers of SMS programmes and other services should also promote available programmes and clarify eligibility criteria with healthcare providers.
Signposting to available supports could also be incorporated formally into patient pathways.While our study identified barriers at the patient level, further research is needed to understand the contextual factors within oncology services that contribute to these issues (i.e., lack of knowledge of available SMS).Further research is also needed on acceptable and effective ways to embed SMS into patient pathways.

| Study limitations
While the sample included a diverse sample of participants with a range of cancer diagnoses, the sample did not include individuals with other common cancer diagnoses, for example, lung cancer and colorectal cancer.As the recruitment approach largely relied on digital communications and social media, we likely excluded those who did not have online access.The study only included people living in the Republic of Ireland and therefore the findings may not be relevant for health services in other contexts.The interviews were with individuals who were predominantly female and white limiting the range of perspectives represented.As our findings suggest the need to improve accessibility of services for those who are non-Irish nationals, future research should include people from other ethnic groups.Also, we did not collect all socio-demographic information as we were not interested in drawing conclusion about whether these variables are associated with use and uptake.In addition, while we applied an inductive and deductive approach to the analysis to ensure 'non TDF' related factors were identified, 38 we acknowledge that different results could emerge if a different framework was used.
Although the TDF includes environmental factors it predominantly focusses on individual level constructs, and using a framework that considers more organisational factors might produce greater insight in the 'environment' domain. 39LLIN ET AL.
-7 of 9 This study identified several factors that may be relevant to support those living with and beyond cancer to engage with SMS services.
Findings emphasised the importance of clear information, signposting from healthcare providers and support from family and peers.
Developing strategies to address emotional barriers to accessing SMS are required.In addition, strategies may need to be developed that improve accessibility of SMS services and build partnerships and connections between SMS services and the broader communities to encourage uptake.

Theme 2
Self-identity and attitudes towards services shapes perceived need and decision to attendSelf-identity and attitudes towards SMS services influences decisions about using SMS in both positive and negative ways.How participants perceived themselves and if this was in alignment or in conflict with SMS service goals shaped their decisions around accessing support.For example, participants who identified themselves as someone who self-manages, joining a SMS programme fit with their self-perception.Perceived controllability and severity of their cancer diagnosis also shaped participants' decision around accessing SMS services.For example, one participant's perception of the non-severity of their cancer diagnosis led to them to deem themselves as undeserving of accessing services.Because it was caught at such an early stage.So, I'm not really one of those sick people that needs services, which is a bit of kind of like an impostor syndrome (Female, Ovarian cancer).Also, participants' perceptions of community cancer support services and what these services convey about cancer was a factor influencing decisions.Some participants described how they thought support-services label cancer as a severe diagnosis which conflicted with how they viewed their diagnosis.Not viewing cancer as something to battle against meant they did not perceive a need to engage with these services.
Demographics of participants.