There are around 367,000 newly diagnosed cancer cases each year in the UK.1 With scientific advancements becoming ever-more sophisticated, there are also more than two million cancer survivors,2 which is forecast to double to four million by 2030.3 However, more than 58% of people affected by cancer suggest that their emotional needs are not looked after as well as their physical needs.4
For many adults living with and beyond cancer, care and support are often provided by their spouse or partner. It’s important to note that cancer does not happen in a vacuum. A diagnosis has a ripple effect across various aspects of a person’s life, including their relationship. It is for this reason that cancer is sometimes referred to as a ‘we disease’,5 suggesting it to be a shared experience that has an impact on both people in the relationship, who each draw on reciprocal support.
Consequently, cancer has been reported to impact relationships in a variety of areas, such as communication,6 intimacy,5 daily and family life.7 With this in mind, emotional support for couples affected by cancer is extremely important, yet often remains unconsidered and overlooked by many healthcare systems.8
Counselling is one method of psychological support that can help couples who are affected by cancer. Research conducted within this context tends to focus on a specific issue, such as body image, intimacy, communication or emotional expression.5 While these individual topics are important counselling priorities, they often tend to be interlinked and co-present.
Counselling can therefore offer a holistic approach to cancer care for couples that can attend to the wide-ranging and multifaceted issues that affect relationships. However, based on current research, it is unclear how couples affected by cancer perceive the purpose of counselling – and if, or how, therapy impacts their relationship. Further investigation would make it possible to identify how counselling services can provide optimal support for clients affected by cancer and, importantly, ensure appropriate support is also in place for counselling staff.
The basis of this article is the collaborative research carried out by the Wellcome Centre for Cultures and Environments of Health (University of Exeter) and We Hear You (WHY), a cancer counselling charity based in Frome, Somerset. Participants were recruited through WHY’s existing network and members, but it is prudent to outline the likely relevance and transferability of our findings across a range of counselling contexts.
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Our study was centred on three, distinct phases of data collection, running from March to October 2020. Due to the COVID-19 pandemic, data collection was carried out in accordance with social distancing guidelines. Phase one (online survey) gathered responses to open-ended questions from 26 people, who were both living with and beyond cancer, and eight current/former partners of people living with and beyond cancer. Simultaneously, phase two (interviews with cancer counsellors) was carried out via Zoom with five counsellors. The findings generated from phases one and two later informed the third phase of data collection, namely, Zoom/telephone interviews with six people living with and beyond cancer and five current/former partners. All qualitative data were analysed using thematic analysis.9
The findings are presented in two distinct categories. First, the perceived purpose and outcomes of counselling for people living with and beyond cancer and their current/ former partners. Second, the experiences of being a counsellor in the field of cancer.
Perceived purpose and outcomes
‘It sounds quite selfish, but that hour of counselling was about me and the things that I needed, and that I needed to talk about. I actually found having that space very important. It helped me get things straight in my mind about how I was feeling about stuff. And gave me that time I needed to then be able to go home and continue to be supportive and caring.’ (Partner).
Cancer undeniably has a major impact on couples who are living with a diagnosis; it was described by one participant as causing ‘shockwaves’ to the core of a relationship. Based on our findings, the purpose of counselling for people living with and beyond cancer and their partners was to offer a rare opportunity for clients to prioritise themselves. Counselling not only provided therapeutic benefits, through allowing clients to express thoughts, worries and concerns, but also contributed to a better understanding of how cancer had impacted their lives.
Clients also discussed their appreciation that the counsellors working for the charity already had a firm understanding of cancer. It was felt that counsellors already possessed baseline knowledge of symptoms, diagnosis, treatments and the wider impact on everyday life. Contextual explanation from clients was not, therefore, required during sessions. In addition, participants felt as though they did not have to shield or protect counsellors from some of the more traumatic or intimate experiences related to cancer. Counselling was therefore recognised as a non-judgmental space to vent, express and explore issues surrounding cancer and how it had affected their lives.
Importantly, counselling also offered an opportunity to express thoughts and feelings about their relationship in a neutral environment, which allowed for emotional privacy from their partner. The provision of psychological support therefore contributed to an enhanced sense of holistic cancer care. As summarised by one person living with and beyond cancer, counselling was ‘...as life-saving as the surgery’.
‘That’s where the counselling has really helped me. I’ve started to explore myself and, you know, some of the patterns of my behaviour. You think, “Well, that was laid down in childhood. I've done that for 49 years. It’s not going to change overnight”.’ (Person living with and beyond cancer).
Throughout the interviews, participants frequently discussed how past traumas and experiences informed their understanding and interpretation of cancer. Many participants recognised the impact of childhood or previous relationship experiences on how their current relationship was affected by cancer. Counselling prompted individuals to explore traumas and events from before the diagnosis. As described by one counsellor, the purpose of therapy was to ‘…expose some of these wounds to the air’.
Counsellors worked with clients to interpret their current patterns of thinking around cancer through the lens of these deeply embedded, cognitive processing systems. A partner of a person living with and beyond cancer noted that ‘…you can’t just start [reflecting/thinking] on the day the cancer was diagnosed, because that’s actually a relatively trivial part’.
Participants recognised that cancer often magnified pre-existing cracks or flaws in their relationship. Communication was frequently described as strained, with incompatibilities in communication styles becoming more evident after the diagnosis of cancer. Counselling therefore provides a way for individuals to realise that such discrepancies are not wholly attributable to cancer. Instead, the diagnosis exacerbates issues within a relationship that are already present, but have perhaps not been fully acknowledged. During an interview, one of the counsellors noted that ‘…[cancer] magnifies where the cracks are in a relationship’. A number of participants also described drifting apart and consequently following separate pathways, as a result of the illness.
In contrast, cancer also magnified the positive aspects of the relationship for some couples. For example, navigating the shared experience of cancer was frequently described as bringing couples closer together. Spending additional time with each other also meant that there was more opportunity to communicate. In addition, the cancer experience prompted some couples to re-assess and reshape their shared goals and future dreams. But whether changes in the relationship due to cancer were positive or negative, counselling provided clients with a safe space to explore and understand.
Experiences of being a counsellor
‘When I first started at WHY, I really felt my lack of medical knowledge and my lack of experience with cancer. That felt like something I wanted to know more about, but that has just dropped away the longer I’ve worked here. Because it turns out you can’t know everything about every type of cancer. There are broad themes in that now I have a vague working knowledge of what you might expect if you’re having chemo, or radiotherapy or you’ve got a stomach bag. I’m never going to know all the specifics and all the variables and that’s not really my job.’ (Counsellor).
Counsellors often talked of the pressure to be ‘all-knowing’ about the disease. However, the research suggests that clients are not seeking biological or medical expertise during counselling sessions. Information about their diagnosis, symptomatology, treatment or prognosis is offered by their hospital clinical teams. Instead, counselling offers a safe space to explore the effect of cancer on their thoughts, emotions, relationships and everyday lives. But the counsellor’s broad understanding of the various ways in which cancer can have an impact on clients’ lives is seen as a strength, by both the client and the counsellor, as it facilitates focused, therapeutic exploration.
The structure of the cancer counselling programme was also identified as a strength. WHY provides up to 16 sessions for clients. Counsellor participants (and clients) talked frequently about how this allowed time and space for in-depth exploration. Other therapeutic approaches, such as Improving Access to Psychological Therapies (IAPT), were often perceived as rushed and time pressed. However, the 16-session structure can give rise to its own set of challenges. For example, the counsellor has to keep the client engaged and promote an awareness that counselling is a process.
‘I was in a different relationship when I started at WHY and that broke down. Now, I’m in a new relationship. It definitely made me look at the relationship I was in and think: “I don’t know what you would be like if we were going through this. You wouldn’t talk to me [and] you would be taking your anger out on everybody.” We didn’t have that level of trust and communication that I see in couples who do get through it.’ (Counsellor).
It was clear that counselling within the field of cancer had an impact on counsellors, beyond the four walls of the therapy room. As illustrated by the above participant, working in this context has the potential to highlight misalignments in a counsellor’s personal life.
Some professionals also developed a hypersensitivity about their own health and that of their family and friends. Furthermore, counsellors described the thematic prevalence of anger and frustration, which cancer can induce in clients. Frequent exposure to such strong emotions clearly had an impact on some counsellors, occasionally seeping into their personal lives. With this in mind, developing positive coping strategies was imperative.
Some counsellors described their commute to and from work as an uninterrupted space to process particularly challenging conversations with clients. Others outlined the importance of spending time with family and friends, offering respite from cancer-related conversations and thoughts. Clinical supervision and professional peer-to-peer support were also identified as fundamental to mental wellbeing.
Counsellors described how the pandemic had affected their ability to self-care. They also talked of the shift towards telephone and virtual sessions, as a result of COVID-19. Many of the counsellor participants remarked on the impact of the move to remote working. For example, remote sessions did not accommodate even a minor break between sessions.
The counsellor would also work from home, making it difficult to set boundaries between the professional and the personal. In addition, many found remote counselling tiring and felt that it had a detrimental effect on their connection with their clients, particularly if they could not observe and interpret body language. However, the shift to remote methods of communication did present additional opportunities for professional support from peers.
Counselling within the field of cancer provides valuable psychological support and should be recognised as a fundamental aspect of holistic cancer care for people living with and beyond cancer and their partners. Counselling not only supports clients with processing and understanding the impact of cancer on their individual lives, but also provides a platform to comprehend how their relationship has been affected by the diagnosis.
The counsellor’s acceptance that cancer evokes a plethora of challenging thoughts and emotions for clients provides a safe space to explore and better understand the wider implications of a diagnosis. As such, counsellors who possess specialist, cancer- related knowledge can ease the burden and further support clients through their experience of cancer.
However, cancer counsellors face a number of challenges in their professional role, as well as in their personal lives. It is therefore essential that counselling services and organisations who work with clients experiencing cancer also have appropriate support mechanisms in place for their clinical team, such as clinical supervision and peer-to-peer support.
The authors would like to thank all of the participants for their time and willingness to share their experiences.
The project was made possible by a Transformative Research Award, funded by the Wellcome Centre for Cultures and Environments of Health.
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