Giving primacy to the voices of people affected by cancer (PABC) in shaping educational innovations—An exploratory qualitative study

1.1 The cancer context

The number of adults diagnosed with cancer is increasing; since the 1970s, the incidence rate for all cancers has risen by 30%. Globally, there are 14.1 million new cases of cancer diagnosed, with 3.7 million cases in Europe and almost 357 000 in the United Kingdom.1, 2 International data indicate a 50% increase in the number of people surviving cancer across the developed world.3, 4 If currents trends continue, it is predicted that worldwide by 2030, there will be over 32 million people living 5 years beyond their cancer diagnosis. Currently, four million people are alive in the United Kingdom who have previously had a cancer diagnosis with over half of those diagnosed (50.5%) surviving their disease for 10 years or more.4, 5 Knowledge about carcinogenesis mechanisms, extreme exposures, and inherited susceptibility provided opportunities to develop precision prevention and early-detection (PPED) strategies that may impact on outcomes as a result of risk-reducing interventions.6

Early detection and treatments for cancer have improved in recent years; hence, survival is increased such that cancer is now considered a chronic long-term condition that requires highly trained health professionals to meet peoples' future health needs.2, 5

Life beyond cancer poses many challenges for individuals and their families; many of those challenges are characterised by health uncertainties both physical and emotional: the threat of recurrence, development of incurable metastatic disease or of a second malignancy, the delayed emergence of expected side effects especially associated with radiotherapy, or the long-term consequences of cancer treatment, for example, fatigue, cardiovascular disease, and psychosocial effects.7-9 Being “successfully” treated for cancer continues to be an experience that has a profound impact on a person's life, one that can leave them with devastating, lifelong consequences.8, 9 Macmillan Cancer Support10 estimates that a significant number of those successfully treated for cancer in the United Kingdom are facing poor health or disability—approximately one in four (25%). For many, their experiences are hidden with their needs unmet. Conversely, many people who survive diagnosis and treatment for cancer report positive effects in that they appreciate life more, feel more mature and empathetic, and have more compassion for others. Many have made positive changes to their lifestyle and indicate that cancer has led to beneficial changes to their close relationships.11-14

1.2 Patient experience

The experiences of cancer patients, families, and caregivers regarding cancer treatment and care, quality of life, the services they use, and the types of support they require are influencing national and international policy and service development agendas15, 16 and in the United Kingdom are beginning to guide health and social care professionals' education. There is historical and contemporary evidence that “patients as teachers” has been mutually beneficial.17-20 The Health Foundation17 reviewed the evidence for user involvement in education highlighting the importance for health care professionals (HCPs) learn about, from and with people who are experts about their own lives.^.

In the United Kingdom, service user and carer involvement in education has become enshrined in the standards of the statutory bodies responsible for the accreditation of educational programmes in nursing and midwifery, health and social care professions, and latterly medicine.18-22 It is an important innovation from the United Kingdom that is changing and challenging the teaching of health care professionals internationally.

Cancer care is becoming increasingly complex, with most patients during treatment being cared for in the community and day care settings (with multiagency providers) as well as cancer centres and general hospitals. Cancer care, for those for whom it is a long-term condition, will be supported by primary care, public health, and elderly care services. Thus, it is a professional and societal imperative to extend the knowledge, skills, and understanding of all HCPs.23-25 Evidence suggests that appropriate education is able to improve care and patient outcomes specifically reducing the long-term adverse effects of cancer and its treatments. Less evidence exists as to how meeting holistic rehabilitation needs, monitoring those surviving cancer long-term, and supporting self-management are enabled by HCP education.26

Possible educational approaches to inform cancer care include formal academic programmes, but workforce and economic constraints militate against many nurses and HCPs being supported with continuing professional development.27 The aim of this project was to achieve a more accessible and contemporary solution through the design and development of online interactive tools that gives primacy to the voices of the personal experiences of people affected by cancer (PABC) and its impact on their lives. It seeks to underpin the development of learning resources from understanding and exploring people's experiences of life with and beyond cancer, which is the focus of our further work.

2.1 Definitions

At the outset and throughout the project the label, “cancer survivor” was debated; our PABC partners were universal in rejecting the label “cancer survivor”; therefore, they chose the title “people affected by cancer” (PABC) requesting it be used throughout our work together. For this project, it was agreed by the project team that PABC should include people who have had cancer in the past (including those treated as children and young people who are now adults), those who are in remission, not undergoing active treatment, or are living with controlled progressive disease receiving maintenance cancer treatment.

3.1 Data analysis

Following transcription, the focus group data were checked for accuracy by the research assistant who added contextual and paralinguistic information. They were listened to and read in their entirety many times by members of the research team prior to analysis. A six-step approach was used to support thematic analysis.30 The specific steps are the following: familiarising the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and subsequently producing themes that will inform, guide, and structure the script for the educational innovation. To increase the trustworthiness of the analysis, the transcripts were read and coded independently by two experienced qualitative researchers, both members of the team. Any differences in interpretation were resolved through discussion between these two researchers and the wider team. Through this process, a thick description was generated, which was used to elucidate the experiences of the participants as shared in the focus group. The research team, including the lay member, met twice during data analysis in order for the team to review and discuss the emerging findings.

Validation was undertaken by presenting some of the findings back to the focus group facilitators and participants (Matthew, John, and Sian) to see if they agreed that emerging themes adequately captured the participants' experiences. We sought to arrive at group consensus in the session by the ordering of the themes from most to least important using the principles of the nominal group technique specifically stage 4 the selection and ranking of the participants' ideas and ensuring all participants had a voice (https://www.cdc.gov/healthyyouth/evaluation/pdf/brief7.pdf). This approach ensured that the findings remain grounded in participants' experiences in which they identified the issues that they believe play an important part in their experiences of life beyond cancer that should inform our proposed development of the patient story script and educational innovation.

4.1 The meaning of survival

All the participants discussed what survival and survivorship meant to them. They specifically pondered on how long you have to be cancer free to be a survivor. They questioned whether survivorship starts at diagnosis or whether they are only classed as a survivor when treatment is complete and there is no clinical (and often microscopic) evidence of disease.

Other issues covered were the “cost” of survival and the quality of survival. Some PABC reported that they questioned whether the price of survival from cancer was worth it given the quality of life sometimes associated with that survival: “I think the word survive doesn't give you an idea of quality and I think that's the key” (Matthew).

The meaning of survivorship, for most its hidden nature, its unpredictability, and the consequent aloneness, was given primacy by all our participants. Describing that they were: “changed people with a changed place in the world” (Matthew) that they were having to adapt to being different in the world, they were: “the new normal” (Sian). They despite the years passing felt that cancer is always there: “a brooding presence … you expect it to come back” (David). Or for Anna, there are the polarities of moving forward but looking back: “I mean life must go on obviously you must seize the day … … it's lurking in the background’ (Anna).

Most acknowledged the support of their families or those important to them, but all felt that this support changed or dissipated the longer they were cancer free.

Anna, Matthew, and John also indicated that surviving cancer had given them a new positive perspective on life and the three of them had developed new interests most associated with cancer and being able to give something back. They were involved in support groups or helping those going through cancer treatments by being involved in walking or writing groups.

The participants also proposed that there needs to be a shift in the general population's perception of cancer, from a death sentence to a chronic, survivable condition with current survival figures supporting this view.1, 2 They see themselves as potential role models and ambassadors: “It's a shift isn't it in sort of general populations' perception of that cancer, so what is cancer treatment and what is it to live after cancer? The big ‘C’ and that shift in that sort of general perception of it and I think that's not easy” (Sian).

4.2 The holistic impact of cancer

The ongoing holistic impact of cancer was evidenced by our participants' experiences of living with and beyond cancer, specifically the long-term impact. The term holistic means we explored the participants' physical, emotional, and social needs, seeking to understand how cancer has impacted on all areas of their lives. The subdivisions in this theme (the 3 P's: psychological, physical, and practical) present in their focus group discussion seemed a helpful way to describe and articulate the complexities of each aspect but that there was also a synergic and often cumulative impact between them. For example, the practical impact encompassed day-to-day living, and the social, occupational, and financial elements of their experiences. Spiritual and existential concerns were more clearly linked to the meaning of survivorship and long-term needs and expectations.

4.3 Psychological impact

PABC reported that the psychological impact was the most important of the three impacts of cancer that were identified. This impact was described as life changing and manifested itself in various ways: loss of control, choice, certainty, and ability to fulfil social and professional roles; anxiety about the future; and body image issues: “it's also the anxiety, the cancer seemed to be the easy thing to treat but it's the anxiety about it coming back, um trying to get on with your life” (David).

While these were common refrains, the psychological impact of cancer was also described as an individual experience that affected everybody differently. David who had cancer as a young person also had to deal with the difficulties of growing up and transitioning from children's to adults' cancer services and the threat of a second malignancy leading to ambiguity about the illness state also shared by other participants: “am I cured, I think I am but” (John), “they tell me it's gone, not in my blood but … they say I'm at a high risk” (Matthew).

This ambiguity especially characterises life postcancer diagnosis and treatment. It is not new in our work but unexpected as the participants had a variety of diagnoses; most commonly exemplars from breast cancer indicate uncertainty due to fear of recurrence; this was confirmed in Sian's story in which she discusses that her medical team never state she is “cured.”

As discussed earlier, uncertainty was seen differently by each of our participants. For some, it was an opportunity for new experiences and roles (Anna, Matthew, and John); for some, it was also a coping strategy “better not knowing than knowing” (Sian); for others, it was a potential harm where for some, waiting and “uncertainty” are regarded as a feature of their cancer experience (David).

4.4 Physical impact

Like the psychological impact, the physical impact of cancer was reported to be dependent upon which type of cancer the survivor had experienced and/or their individual circumstances. For Sian with colorectal cancer, she had a permanent stoma, a constant reminder. Others described being left with disabilities, body changes (eg, weight gain, scarring, or loss of body parts), chronic conditions (eg, lymphoedema), late effects of chemotherapy and other treatments, fatigue and continuing often invisible side effects from ongoing or treatment related medication: “it's those late effects of the impact it has on your life and it's getting married and telling your future wife that you know the chances are that you're infertile after the treatment” (David).

4.5 Practical impact

The participants highlighted a diverse range of practical impacts, including loss of physical ability to work and fulfil social roles: “I still had things to do with my life, I was about to become a Grandad” (John).

These practical impacts in turn have an effect on other areas of the survivors' life, such as working following cancer, the financial impact of cancer, and its consequences on life.^24.

4.6 Long-term needs and expectations

Some of the PABC indicated that they felt patients can be supported too much and that this could stop them from moving on to the next stage of recovery while others highlighted that they would have benefited from having a rehabilitation package in place to signpost them to appropriate services/support. They also highlighted that they and their families may have unrealistic expectations of when they will move on to this next stage.

Our participants reported that post treatment, there is sudden lack of support, they felt abandoned, from being part of an intensive health care relationship to almost non-existent contact. Anxiety when being discharged from care, and the worry as to who will coordinate their future care. As exemplified by John's experience: “What I found when you're going through your treatment you have all the practical help in the world, as soon as you've finished your treatment and you're sent home, there's no follow up at all, very little, you might have a district nurse come in just to change your dressing, or something, you know there's no care professional that comes in and asks how you're doing” (John).

4.7 HCP roles and education

Our participants anticipated that the role of staff was to work as a multidisciplinary team to ensure that support structures are in place, to empower patients by giving them the tools, control, and coping strategies early (ie, at diagnosis), and to signpost them to other support mechanisms (ie, support groups, education packs, and discharge leaflets) in order to prevent the PABC not being able to cope. Communication with patients was reported to be crucial in order to identify, and tailor support, to the individual goals, needs, feelings, and expectations of patients perhaps by the use of holistic needs assessment. It was also highlighted that the timing of support needs to be appropriate to the individual; self-referral by patients was better than staff referral because patients could express their needs first-hand. In addition, self-referral was reported to work well with holistic needs assessment/audit tools. Participants also reported that lack of effective communication with the primary, nonspecialist secondary and community care sectors (ie, noncancer specialists) was emphasised.

5.1 Limitations and recommendations for future research

The limitations of this study relate to the small number of participants; this in part is mitigated by the diverse nature of the participants' background and experiences, which provided varied insights. However, the retrospective nature of the description of their experience may be an additional limitation and impact on the validity and generalisability of our findings. The focus group also included a carer, Ron; his presence may have influenced the dynamics of the focus group and the topics explored and thus is a potential limitation in this work. This study does however provide useful preliminary data and further insights into the biographical disruption of a cancer diagnosis at whatever age or developmental stage.38 Four of our participants were in their middle years when diagnosed, while only one was a teenager; thus, future research may benefit from consideration of the age and life stage at diagnosis. Additionally, it would be helpful in relation to the development of educational provision to explore in depth the differences in experience related to type of cancer treatment. With cancer now considered a long-term condition consideration of the additional impact of other conditions/diagnoses on experience is an important focus for future research.