Exploring the experiences of cancer survivors and their caregivers accessing supportive care services in New Brunswick, Canada

Abstract

Supportive care services can reduce distress and improve quality of life for cancer survivors and their caregivers. However, people often struggle to access these services. With this issue in mind, the current study aimed to explore the experiences of cancer survivors and their caregivers in accessing supportive care services in New Brunswick, Canada, as well as their prospective interest in a provincial supportive care centre. Forty-four individuals participated in an online or mail survey designed to identify experiences accessing supportive care services and supportive care needs. Results indicated the supportive care services that are most important to participants (e.g., mental and emotional support). Many participants noted that they were unaware of the availability of follow-up services and methods of access. Participants had a variety of unmet care requirements including lack of informational support and care coordination. All participants reported that they would like to have a supportive care centre in New Brunswick. These findings offer important recommendations for improving the coordination and delivery of supportive cancer care for this population.

Cancer survivors, defined by the American Cancer Society (n.d) as people who have received a cancer diagnosis regardless of their diagnostic or treatment stage, often require a variety of supportive care services (SCS) in addition to medical treatment. SCS include a range of services designed to meet survivors’ and their caregivers’ physical, social, emotional, psychological, spiritual, and practical needs during treatment and follow-up (Fitch, 2008). After receiving timely access to SCS, cancer survivors often report better quality of life (Jordan et al., 2018), and can even experience prolonged survival (Berman et al., 2020; Monnery et al., 2018). However, SCS are not reliably integrated into routine cancer care (Berman et al., 2020; Brazil et al., 2004), limiting access to these services and leading to barriers in the delivery of quality care (Olver et al., 2020). To learn more about existing gaps in supportive care service delivery, this exploratory study examined the experiences of cancer survivors and their caregivers in the province of New Brunswick, Canada. Further, it explored interest on the part of survivors in a cancer supportive care centre in New Brunswick, and what such a centre would ideally look like.

BACKGROUND AND PURPOSE

The main goal of SCS delivery is to provide cancer survivors and their caregivers with increased access to supportive care, defined as care involving “the prevention and management of the adverse effects of cancer and its treatment” (Multinational Association of Supportive Care in Cancer, n.d, para 3). These services include resources such as support groups, education programs, fitness/rehabilitation, nutrition classes, and counselling, all of which focus on improving the quality of life of individuals impacted by cancer (Fincham et al., 2005; Fitch, 1994, 2008; Harrison et al., 2009; Klastersky et al., 2016; Kirkham et al., 2019; Olver et al., 2020; Stiefel & Guex, 1996). SCS can assist cancer survivors and caregivers in coping with the effects of diagnosis and treatments, reducing the need for clinic or emergency visits and hospitalizations, thereby reducing system burden (Berman et al., 2020). Despite these benefits, SCS are often unavailable due to restricted funding from healthcare organizations (Beesley et al., 2008). A lack of support services can lead to a variety of unmet emotional/psychological (Hodgkinson et al., 2007; Sanson-Fisher et al., 2000), informational (Fincham et al., 2005; King et al., 2015; Sutherland et al., 2009), and physical needs (Evans Webb et al., 2021; Harrison et al., 2009; Sarkar et al., 2015), as well as difficulty participating in activities of daily living (Harrison et al., 2009).

The current study examines the experiences of cancer survivors and their caregivers accessing SCS in New Brunswick, as well as gaps and barriers to access. New Brunswick is a small, bilingual Canadian province (approximately 835,000 habitants), with roughly 50% of the population living rurally (Statistics Canada, 2018, 2023). Under the Canada Health Act, the province is responsible for providing medically necessary services to its residents (Tiedmann, 2008), including cancer care. The definition of ‘medically necessary’ does not specify all supportive care services, leaving their funding within the jurisdiction of the province. According to the Government of New Brunswick website, there are currently two cancer care centres in the province that provide radiation therapy, both located in urban settings: the Dr. Leon Richard Oncology Centre in Moncton, and the Atlantic Health Sciences Cancer Centre in Saint John. There are several other oncology clinics across the province providing other cancer services. Learning more about the experiences of cancer survivors and their caregivers in the province may help inform the provision of cancer care in New Brunswick, as well as cancer SCS elsewhere.

This study also examined whether there is interest in a supportive care centre in New Brunswick, and what such a centre ideally would look like. Supportive care centres aim to improve the lives of individuals with cancer and their caregivers by offering a variety of SCS, such as exercise classes, support groups, and symptom management and support (Dempsey Center, 2019). Examples include the Dempsey Center in Maine (https://www.dempseycenter.org/) and the Wellspring Centres in Canada (https://wellspring.ca/). At the time of this writing, there is no supportive care centre in New Brunswick.

METHODS

This study used a mixed-methods design. A purposive sampling strategy was used to recruit cancer survivors who had received a cancer diagnosis and/or treatment in the past five years, and caregivers (e.g., family members) as well as care providers (e.g., health professionals) who had provided care in the past five years. For the purpose of this study, we used the definition of “cancer survivor” employed by the American Cancer Society (n.d.), in which all patients who have received a cancer diagnosis and/or treatment are considered survivors. Participants were recruited through social media, email, online newsletters, and postings in community locations and health/oncology centres in New Brunswick. Recruitment took place from July 2021 to September 2023. Prospective participants contacted the research team via phone or email to learn more about the study.

The study surveys were completed independently online or by mail, or over the phone with a research assistant. Surveys were developed by the research team based on academic literature and consultation with diverse stakeholders. The surveys commenced with a series of demographic questions asking about age, gender identity, place of residence, marital status, language spoken at home, highest degree of education completed, employment status, occupation, and religious affiliation. Survey versions then varied slightly for cancer survivors and for caregivers and care providers. Cancer survivors were asked a series of questions regarding the type of diagnosis and the time since diagnosis and treatment. They were asked about the importance of various SCS, the availability of services, and gaps and barriers to receiving services. Finally, they were asked questions regarding the possibility of having a physical supportive care centre in NB. Caregivers and care providers were asked similar questions centring around diagnosis and support provided to the individual cared for, the importance of SCS, the availability of services, and gaps and barriers. They were also asked questions regarding the possibility of having a supportive care centre in New Brunswick. Response options varied for different questions and included Likert scales, multiple choice, and open-ended responses. Surveys were available in English and French.

The survey data were collated and organized in SPSS Statistics version 29 (IBM). Quantitative data were analyzed using descriptive statistics (e.g., frequency counts). Qualitative data were analyzed using content analysis. Two master’s educated research professionals with experience in qualitative research conducted the content analysis. They each performed a review of the qualitative data to create a list of preliminary codes with code definitions. They then met to review the codes and definitions and develop a consolidated codebook. Data were uploaded to Nvivo v. 14 (QSR International) software for further analysis. Coding reports were produced through Nvivo. The research professionals reduced the content of code summaries and identified themes.

RESULTS

Participant Characteristics

A total of 44 responses were received. Thirty-three responses were from cancer survivors, nine were from caregivers, and two were from care providers. Due to the small number of care provider responses, they were excluded from the analysis, making the total sample size 42.

Of the 33 cancer survivors, the median age category was 55–64 years. Twenty-seven respondents were female and six were male. Of the nine caregiver respondents, the median age category was 45–54 years. Seven respondents were female and two were male.

Among cancer survivors, most respondents resided in the province’s more populated areas (e.g., the Fredericton, Saint John, and Moncton regions). For caregivers, participants were fairly evenly divided between urban and rural areas. The majority of participants were married or in a common law partnership (n = 29), while others were either divorced/separated (n = 6), single (n = 4), widowed (n = 2), or preferred not to say (n = 1). Cancer survivors were fairly evenly distributed based on the number of years since diagnosis, with eight participants having received their diagnosis within the past year; 10 were 1–2 years post-diagnosis; nine were 3–4 years post-diagnosis; and six were diagnosed more than five years ago, but received treatment in the past five years. Types of cancer and treatment varied widely throughout the sample.

Supportive Cancer Care Services

Importance of services

Participants were asked to rate the importance of various SCS using a four-point Likert scale ranging from unimportant to very important (Table 1). The services commonly rated as most important by cancer survivors included ones that provided information regarding what to expect from chemotherapy/radiation treatments, that helped in building wellness and resilience, and that assisted with pain and symptom management/palliative care. Caregivers rated pain and symptom management/palliative care and knowing what to expect from chemotherapy/radiation treatments as most important for cancer survivors, followed by sessions regarding management of grief and loss, support for managing life with cancer, and social work and counselling services. For both participant groups, children’s programs and assistance with transportation were most often rated as unimportant for cancer survivors.

Table 1.

Importance of SCS for Cancer Survivors, as Perceived by Cancer Survivors and Caregivers

Supportive Care Service	Cancer Survivors						Caregivers
	N	% VI	% I	% SI	% UI	N	% VI	% I	% SI	% UI
Health and wellness workshops and classes	33	58	27	3	12	9	33	33	22	11
Assistance with transportation	33	24	15	33	27	9	22	33	0	44
Managing life with cancer support sessions	33	48	36	6	9	9	56	11	22	11
What to expect from chemotherapy/radiation treatments	32	78	19	3	0	9	67	11	0	22
Integrative medicine services (e.g., massage, reiki, acupuncture)	33	55	21	15	9	9	44	22	22	11
Health meditation and relaxation techniques	33	52	18	24	6	9	44	22	22	11
Children’s programs (e.g., art therapy, teen group)	33	24	27	12	36	8	25	13	0	63
Social work support and counselling	32	56	28	9	6	9	56	33	11	0
Nutrition and healthy cooking sessions	33	46	30	15	9	9	11	56	0	33
Financial management during cancer treatment	33	61	9	12	18	9	33	44	0	22
Pain and symptom management/palliative care	32	66	13	13	9	9	78	11	0	11
Grief and loss management sessions	32	41	28	19	13	9	56	33	0	11
Building wellness and resilience	33	67	27	6	0	9	22	56	11	11
Finding community and connection	33	61	15	12	12	9	33	33	11	22
Other	14	36	29	0	36	4	50	0	0	50

Note. VI = Very Important, I = Important, SI = Somewhat Important, UI = Unimportant

Caregivers were also asked to rate which SCS were most important for themselves (Table 2), using slightly different categories. Guidance and support for family members/parents/caregivers of individuals impacted by cancer and grief and loss management sessions were rated as most important, followed by health and wellness workshops and classes, integrative medicine services, and building wellness and resilience. Assistance with transportation was most often rated as unimportant for cancer survivors.

Table 2.

Importance of SCS for Caregivers, as Perceived by Caregivers

	N	% VI	% I	% SI	% UI
Health and wellness workshops and classes	9	44	56	0	0
Assistance with transportation	9	33	22	11	33
Guidance and support for family members/parents/caregivers of individuals impacted by cancer	9	67	33	0	0
Integrative medicine services (e.g., massage, reiki, acupuncture)	9	44	44	11	0
Health meditation and relaxation techniques	9	22	56	22	0
Grief and loss management sessions	9	56	22	11	11
Building wellness and resilience	9	44	44	11	0
Finding community and connection	9	22	78	0	0
Other	4	50	0	0	50

All survey participants were asked to list their top three priorities for SCS that would have made the biggest difference to them. Across the sample, mental and emotional supports (n = 27) were most commonly noted, with financial assistance (n = 18), access to cancer specific information (n = 17), access to multidisciplinary services (n = 16), local/peer support (n = 13), navigation (n = 13), and help with life after cancer (n = 10) also being noted by many participants.

Follow-up services

Cancer survivors were asked to rate their experiences with follow-up health and supportive care services that they received after completing cancer treatment using a five-point Likert scale ranging from very poor to very good. The questions asked whether follow-up care met their needs and whether they were able to access required services in a timely manner. As shown in Table 3, responses varied widely. Close to half of participants reported that their access to follow-up cancer care that met their needs was good or very good, whereas over a quarter of participants stated that access was poor or very poor, and a quarter rated their access as fair. Almost half of participants rated their ability to get access to the right services when they needed them as good or very good, whereas nearly a third rated their access as poor or very poor, and a quarter rated their access as fair.

Table 3.

Follow-up Care Ratings of Supportive Care Services Received

Follow up care	N	% Very Good	% Good	% Fair	% Poor	% Very poor
Overall, receiving follow-up cancer care that met my needs	32	25	22	25	12	16
Getting the right services when I needed them	32	28	16	25	22	9

Service availability

Cancer survivors were also asked whether SCS were available and if they accessed them. There were 33 respondents, but respondents could select multiple responses. Eighteen cancer survivors sought out resources that were available through SCS, 12 did not know where to go or who to ask about these services, nine did not think these services were available to them, and seven did not know they could ask about these services. Only one participant did not want to ask for the services. No respondents reported that they were too embarrassed to ask about these services.

In their responses to open-ended questions, many participants wrote about services that were missing from their care. These included support services during and post-diagnosis, integrative medicine, financial help, and access to education/information. One participant summarized missing support services as follows: “Things that need to be addressed include physical challenges after treatment ends, emotional challenges, practical challenges, lack of support services (psychologist, for example, in my case)” (Cancer survivor, Participant 36). Many participants reported feeling overwhelmed with their diagnosis and treatment, which was compounded by difficulties in obtaining adequate information regarding services.

Educational services

In their responses to open-ended questions about educational services, most participants noted that these types of services would have been helpful, particularly education/information on available resources and what to expect. As stated by one caregiver, “We were lost. We had no idea what to expect, what was to come. Or how to deal with what we were going through” (Caregiver, Participant 41). Many participants shared that they were left to find information themselves: “I had to Google what to expect, would be great to have someone designated to answer and/or advise you of what your journey will entail and what to expect after the fact” (Cancer Survivor, Participant 34). The importance of receiving evidence-based information was also commonly discussed by survivors and caregivers.

Participants were asked to choose how they would prefer educational services to be delivered. Cancer survivors most frequently named webinar/teleconferences (n = 27), followed by interactive in-person workshops (n = 24), and website articles (n = 20). Caregivers reported webinar/in-person workshops (n = 5) and electronic newsletters (n = 5) as the top delivery methods for the person they cared for. For themselves, they preferred webinars/in-person workshops (n = 6) and interactive in-person workshops (n = 5).

Mental health support services

Cancer survivors were asked about access to mental health support and counselling services by selecting the services they received from a list of mental health services. One-on-one counselling was accessed by the largest number of participants (n = 17), followed by online peer support groups through social media (n = 14). Some participants also reported that they accessed professionally led online peer support groups (n = 5), face-to-face peer support groups (n = 5), wellness programs in the community (n = 3), a retreat weekend (n = 3), a telephone peer support group (n = 2), a one-on-one peer mentoring group (n = 2), and various services categorized as “other” (n = 8).

In response to open-ended questions, cancer survivors and caregivers noted that mental health and support services were limited in the public health system and commented on the high costs associated with private services. Some participants reported long wait times or limited sessions when accessing services. Others reported that psychological services were not available through the oncology centre:

There used to be a full-time psychologist in the Oncology Dept at the [location name]. Seeing her was immensely helpful. There has been no psychological services for years. I have fortunately been able to see that psychologist as she has a small private practice out of hospital, and my health insurance covers it. In the past I have asked for a psychologist facilitated support group in Oncology and was told there weren’t resources (Cancer survivor, Participant 36).

Several participants noted that they did not feel that mental health concerns were a consideration of the medical team, or that there was a lack of effort to connect patients to support services. The availability of peer support groups for individuals at different stages of diagnosis and with different types of cancer was noted as a needed resource:

More peer support and learning opportunities, and complementary/supportive care is needed. Peer support especially for a diversity of cancers, not just breast cancer specific supports. (Cancer survivor, Participant 40).

A few participants reported difficulty carrying on with life after treatment and the importance of mental health resource availability after hospital discharge. Such responses highlight the importance of mental health supports for survivors and the barriers that individuals may encounter if these supports are not readily available.

Care coordination, navigation, and person-centred care

In response to open-ended questions, most participants discussed the fragmented nature of care. As stated by one participant, “As far as integrative care, I’d say it is lacking in NB. I am aware of how it is the standard of care elsewhere (Ontario, BC for example). It seems that NB is way behind in offering complete cancer care” (Cancer survivor, Participant 36).

Some participants voiced concerns about their care providers, such as their family physician and oncologist(s), not communicating with each other. Some felt that care providers were unacquainted with SCS and resources, and that pertinent information was not shared with them. Participants also faced challenges accessing follow-up care, primarily owing to long wait times. Overall, cancer patients felt that they had to find most non-medical services and resources on their own, highlighting the need for care navigation in this population.

While some survivors reported receiving kind, thoughtful, and compassionate care from their medical providers, a number of participants also raised concerns about their treatment:

In my opinion, it seems that the attitude that you get from physicians (my oncologist in particular) is that you should be grateful that you are alive, and any concerns you may have are dismissed as minor – i.e., if you survive, why are you complaining? It is like the right to complain about “minor” things has been taken away from cancer patients if you just look at successful treatment being achieving survival only (Cancer survivor, Participant 35).

One participant noted frequent feelings of frustration and dismissal when asking for information/supports that were not related to treatment. Another participant noted that they had to be their own advocate, as they felt that the care team did not have a full picture of their diagnosis. Some participants commented on the need for someone who could explain the full care process, someone available after hours to provide guidance and answer questions, or a nurse navigator.

Supportive care centre

Participants were asked whether they would be interested in having a supportive care centre for cancer in New Brunswick, which would offer the services they deemed as important for their non-medical needs. They were also asked what such a centre ideally would look like. All participants reported that they would like to have a supportive care centre in the province.

Participants described an ideal centre as one that could house support services for their physical and mental health needs, including educational resources, peer support groups, psychotherapy, physiotherapy, nutritional classes, and social support. When asked why they would consider such a centre to be important, some participants noted that they were aware of the availability of supportive care centres in other provinces and saw the benefits in having such a centre in New Brunswick. These benefits included integrated medicine options, more cohesive care, lessening burden on cancer survivors and their family members, and making it easier to cope with cancer. As stated by one participant, “I have met so many cancer patients who have all but given up in their struggle. A support centre would make it so much easier to receive proper mental and physical advice to help in a patient’s journey” (Cancer survivor, Participant 27).

Participants commented on the informational benefit of such a centre, where people could go to receive information about available supports. Across the sample, most participants indicated a preference for the centre’s services to be provided in English (n = 40), with two participants preferring French and bilingual programs, respectively.

DISCUSSION

This study provides insight into the experiences of cancer survivors and their caregivers accessing SCS in New Brunswick. Participant responses shed light on the services they deem important, including services that provide informational support, wellness and resilience support, and assistance with pain/symptom management, grief, and loss management. Top priorities for participants included mental health and emotional supports, financial assistance, and access to cancer-specific information and multidisciplinary services. Participants were divided on whether follow-up services met their needs. Many participants noted that they were unaware of the availability of follow-up services and methods of access, with close to half of participants not knowing services were available to them or how to access these services. While a large proportion of survey respondents reported that they accessed mental health supports, many commented on the need for more supports through the health system. Participants also commented on the fragmentation of care and lack of service availability, stating that they could have used more navigational support. Finally, participants expressed a great deal of interest in having a supportive care centre for cancer in New Brunswick.

The current results reinforce past findings from the literature. Many studies have described a lack of information, awareness, and coordination of available SCS in cancer care (Avery et al., 2021; Brazil et al., 2004; Multinational Association of Supportive Care in Cancer, n.d.; Newton et al., 2021; Olver et al., 2020). For instance, Avery et al. (2021) examined the experiences of participants accessing a cancer care centre in a western Canadian province and reported that participants felt uninformed about available services and perceived a lack of informational support from clinicians about SCS available through the cancer support system. Similarly, Fitch et al.’s. (2019) national survey of individuals with cancer found that many participants encountered at least one emotional issue, such as recurrent anxiety, depression, and loss of interest in daily activities following treatment. Of those who sought help, about a quarter faced difficulties accessing services. Many also reported that they did not seek help as they were told that what they were experiencing was a normal response to their situation and they did not think it could be altered. These challenges surrounding SCS are unfortunate, as past studies have shown benefits of supportive care in improving quality of life and care outcomes (Jordan et al., 2018; Scotté, 2012; Temel et al., 2010). SCS can reduce distress and increase physical, social, emotional, and functional wellbeing (Raz et al., 2016; Temel et al., 2010). Timely access to SCS can also help prevent problems from becoming unmanageable (Walsh et al., 2011; Young & Snowden, 2019). These findings highlight the impact that effectively implemented SCS can make in the lives of cancer survivors and their caregivers.

The results from this study provide guidance for improving the provision of SCS in New Brunswick. Based on participants’ data, the province should aim to improve access to informational resources, peer support, mental health services, multidisciplinary services, and navigation. Over half of the participants in this study either did not know where to go or who to ask about services, did not think that these services were available to them, or did not know they could ask about these services. These findings demonstrate that while service availability may be low, cancer survivors and their families might also lack awareness of the support services that are available. If steps were taken to increase the availability of SCS, it would also be important to ensure coordination was in place to enhance awareness of services. The province should also consider creating a supportive care centre, where all services would be available in the same place. Based on participants’ responses, a centre housing physical health, mental health, and educational resources, as well as peer and social supports, would be ideal. Coordination between clinical cancer care and supportive cancer care should also occur to allow for more cohesive treatment (Brazil et al., 2004).

Limitations

The current study has several limitations. This study was conducted during the COVID-19 pandemic, and it is possible that public health restrictions surrounding the pandemic may have impacted recruitment of cancer survivors and caregivers, particularly from physical locations, such as health or oncology centres. Challenges surrounding the pandemic could also explain why so few care providers volunteered for the survey. In addition, participants’ experiences accessing care were likely impacted by many services and programs being closed or curtailed during the pandemic. Another limitation with the study is the fact that a province-wide oncology navigation program was launched near the end of data collection for this survey. The effects of this program are likely not accounted for in participant results. However, it seems plausible that some of the concerns that participants discussed might be addressed by this program in the future. Finally, the demographics of the sample should be mentioned. Most of the study participants were female, and participants tended to come from the province’s three urban centres. It is unclear whether these results would have differed with more male participants and with a greater number of participants from less-populated areas of the province.

CONCLUSION

This study aimed to examine the experiences of individuals with a recent cancer diagnosis and their caregivers in accessing SCS in New Brunswick, as well as their potential interest in a province-wide supportive care centre. Participants’ survey responses revealed various unmet supportive care needs, including barriers to cancer-related educational supports, insufficient mental health services, and a lack of service coordination and navigation. All respondents indicated an interest in a comprehensive supportive cancer care centre to address these gaps and provide a common hub for a variety of resources tailored to non-medical needs. Together, these findings reveal the most common unmet need domains and generate important recommendations that may be helpful for stakeholders seeking to make quality improvement changes.