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. Author manuscript; available in PMC: 2022 Mar 31.
Published in final edited form as: J Psychosoc Oncol. 2021 Mar 31;39(3):479–484. doi: 10.1080/07347332.2021.1904086

Exploring the Challenges in Accessing Care and Support for Cancer Survivors in Australia during COVID-19

Cindy Davis 1, Tamara Cadet 2, Karina Rune 1, Patricia Wilson 3, Janneka Banks 3
PMCID: PMC8689679  NIHMSID: NIHMS1751426  PMID: 33787464

Access to medical care and support services are important factors for cancer survivors well-documented in the literature (Firkins et al., 2020). The novel coronavirus (COVID-19) has significantly impacted cancer patients globally as cancer treatments have been delayed or altered (Papautsky & Hamlish, 2020, Nekhlyudov et al., 2020). Further, cancer support services have closed their doors and survivors have been told to self-isolate at home. The impact on the access to medical care and support services for cancer patients is uncertain as the world continues to control the pandemic. Understanding the potential impact is critical as those in cancer treatment or cancer survivorship have unique emotional needs related to anxiety, depression, and fear of recurrence (Aronson et al., 2014; Reed et al., 2020). Thus, the purpose of the current study is to explore the impact that COVID-19 had on Australian rural/regional cancer patients and their ability to access health services, treatment, and supportive care during this pandemic.

Despite the fact at the time of this writing, the global number of COVID-19 cases is more than 46,000,000 and the number of deaths is more than 1.2 million (WHO, 2020), Australia has been remarkably spared. While there was an increase in Australian cases in March 2020, cases have declined significantly since then. This decline may be due in part to Australia’s five phase approach: containment, reassurance amid uncertainty, cautious incrementalism, escalated national action and currently a transition to a new normal (Duckett & Stobart, 2020a). A combination of decisions to move the country along were critical in the early outbreak of the pandemic including 1. Cooperative governance informed by experts; 2. Closure of international borders and mandatory quarantines; 3. Rapid adoption and acceptance of enhanced social distancing measures; and 4. Expansion of telehealth (Duckett & Stobart, 2020b).

There remains uncertainty regarding COVID-19, and Australia like other countries eventually will have to consider long-term success to protect the health and safety of its citizens. While this planning is currently happening, change to this protection needs to include the care of patients who are affected by cancer. To care for these patients means understanding their needs and responding during this time. This understanding will provide formative data to develop interventions needed for the long-term as Australia and the world learn about the after-effects of the COVID-19 pandemic. The specific research questions were: 1) What is the impact that COVID-19 had on Australian rural/regional cancer ability to access medical care and support services? and 2) Was there a difference in the impact of COVID-19 in access to medical and support services based on age, gender, and treatment status?

Methods

Participants/Design

Rural/regional cancer survivors (n=66) completed an online survey via Qualtrics between July and October 2020 regarding the impact of COVID-19 and their ability to access medical care and support services. Data were collected as part of a bi-annual survey on client satisfaction at a rural/regional community cancer wellness center in Australia. The cancer wellness center cares for cancer survivor and caregivers at all stages on the cancer trajectory from diagnosis to end-of-life. The cancer center and others in the region ceased face-to-face services in mid-March with limited services returning around June 2020. Qualitative and quantitative data were collected. Descriptive data were collected for responses to demographic items. A brief 8-item questionnaire with a 5-point Likert scale ranging from strongly agree to strongly disagree was developed by the research team to assess the impact of COVID-19 and their ability to access medical care and support services (see questions in Appendix 1). In addition, there were two open-ended questions: “What has been the biggest challenges or concerns during COVID-19?” and “What has been most helpful during COVID?”. All data were collected anonymously, and implied consent was obtained by clicking on the survey link. Quantitative data were analyzed using SPSS version 26 and explored the relationship between demographic factors, access to treatment, access to support and emotional impact of COVID-19. Qualitative data were analyzed using content analysis.

Results

Descriptive Data

All participants were from a rural/regional area in Australia and included a mix of gender, age and cancer types (see Table 1). Nearly 40% of participants were currently undergoing treatment for a new diagnosis or a recurrence.

Table 1:

Demographics of participants (n=66).

Variable Category n (%)
Gender Female
Males		 47 (71%)
19 (29%)
Age (Years) 40 and under
41–64
65 and older		 4 (6%)
28 (42%)
34 (52%)
Race Non-Indigenous
Non-Indigenous		 64 (97%)
2 (.03%)
Cancer type Breast
Prostate
Gastrointestinal
Lung
Melanoma
Gynecologic
Lymphoma
Other		 30 (45%)
7 (11%)
6 (9%)
4 (6%)
3 (5%)
3 (5%)
3 (5%)
10 (15%)
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Overall, participants agreed or strongly agreed to the following statements about the impact of COVID-19: 1. Reduced social support from family and friends (59%); 2. Reduced ability to see their health care providers (46%); 3. Impacted access to supportive services (44%); 4. Increased distress over their cancer and health (40%); 5. Negatively impacted emotional wellbeing including depression and/or anxiety (35%); 6. Caused major worry in life (33%); 7. Delayed testing or check-ups for their cancer (20%): and 8. Delayed access to cancer treatment (15%).

Between-Group Analyses

Independent t-tests measured differences between groups with an alpha set at <.05. The three independent variables were: age (≤ 64 or ≥65); cancer status (currently in treatment for cancer or in remission/recovered); and gender (female or male). The dependent variable was the impact of COVID-19 on ability to access medical care and support services with higher scores indicating less impact of COVID-19. Independent t-tests found significant differences in age with older participants (≥65) reporting that COVID-19 had significantly greater impacted in their ability to access to supportive services (≤ 64: M=3.52, SD=1.34 vs ≥65: M=2.59, SD=1.45, p=.018) and access social support from family and friends (≤ 64: M=2.96, SD=1.43 vs ≥65: M=1.96, SD=.90, p=.003). There were not significant differences between gender or cancer status and access to services.

Qualitative Data

Content analysis of the question focusing on the biggest challenges faced during COVID-19 indicated a theme of social concerns including isolation from friends and family. Example quotes from participants to support this theme included: “Being stage 4, I feel like it has somehow limited my options for what to do with my time and my family moving forward -- 2020 was meant to be a year of travel, so that has had to be adjusted.”; “Not being able to visit or have my daughter in full time care visit us at home.”; “Hardly any contact with grandchildren.”; and “Initially not being able to get groceries as they weren’t delivering and others not social distancing”. Some participants also reported concerns with access to treatment and the government’s ability to cope with the pandemic.

In relation to what was most helpful during COVID-19, a common theme identified was access to friends and family via online services or telephone. Example quotes from participants to support this theme included: “Zoom video meetings with my children and grandchildren” and “contact with friends/family and FaceTime”. Access to online activities such as yoga, support services and cancer communities was also identified as helpful during COVID-19. Finally, extra time to engage in physical activity was helpful for a few participants.

Discussion

Findings from the current study highlight the impact that COVID-19 is having on rural/regional cancer patients in Australia, especially in relation to accessing support services. However, it is important to note the limitations of the current study which included a small sample recruited from a wellness center in one rural/regional area of Australia; therefore, the results are not generalizable. Further, the survey was online which required some degree of technical literacy. Despite these limitations, findings revealed that cancer survivors face challenges in navigating the restrictions of social isolation. Given the unique emotional needs of cancer survivors (Aronson et al., 2014; Reed et al., 2020), access to support and manage those needs is critical (Culbertson et al, 2020; Doran et al., 2018). Health care professionals can assess whether there is sufficient support available to deal with the increased concerns faced by cancer survivors during this pandemic. Thus, providers of psychosocial support may need to make strategic changes in the provision of access to health and support services. Changes might include telehealth consults, virtual support groups and virtual check-ins with cancer survivors. Furthermore, providers may just need to ask patients what they think they want or might need.

Not surprisingly, findings revealed that older participants (65+) were more negatively impacted by COVID-19. Further evidence indicates that the elderly are a vulnerable population regarding COVID-19 (Brooke & Jackson, 2020). The emotional toll on older adults is difficult and those who have had cancer or are being treated for cancer may be experiencing higher levels of distress given their health condition. Further, this might be due to their lack of technology skills and familiarity with virtual support and health resources. Previous research supports the notion that there is not a ‘one-size’ fits all approach to service provision in cancer care (Cadet et al, 2017). Therefore, expecting all cancer survivors to engage in virtual services is unrealistic. It should not be assumed that all cancer survivors will be able to engage with virtual services. Providers may need to consider the use of a phone only for those who are uncomfortable with virtual health consults and those who cannot afford internet services. Further research is needed to evaluate intervention strategies and communication approaches to assess how the needs of cancer survivors can be adequately addressed during times when face-to-face contact is not possible. Oncology nurses and social workers can play a key role in assessing the support needs of cancer survivors and facilitating strategies to ensure that survivors and their families have the skills necessary to access virtual support and health services. Finding ways to provide access for cancer survivors to family, social and health care networks is an important part of providing psychosocial care and meeting the needs of cancer survivors.

Appendix 1: Questionnaire

We would like to know how COVID-19 is impacting you. Please select the responds that best describes the statement below relating to the impact COVID-19 has on your life based on the following likert scale:

  1. Strongly agree

  2. Somewhat agree

  3. Neither agree nor disagree

  4. Somewhat disagree

  5. Strongly disagree

  1. COVID-19 is impacting my ability to see my health care providers.

  2. COVID-19 has delayed access to my cancer treatment.

  3. COVID-19 has delayed testing or check-ups for my cancer.

  4. COVID-19 has impacted my access to supportive services.

  5. COVID-19 has reduced my social support from family and friends.

  6. COVID-19 has increased my distress over my cancer and health.

  7. COVID-19 is a major worry in my life.

  8. COVID-19 is negatively impacting my emotional wellbeing (e.g., depression and/or anxiety).

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