Breast cancer increases in incidence with age, with incidence rates peaking at ages 65–69 years,1 meaning many people living with the disease are also living with age-associated challenges. Challenges include other chronic conditions, vision or hearing impairments, and/or age-related cognitive decline.2 These can impede patient engagement and communication. At the same time, treatments for cancer are developing apace; contemporary treatment often entails complex and multiple lines of therapy, adding complexity to self-care demands that patients face.

Self-care during and following treatment includes patients seeking help in a timely fashion for new or concerning symptoms and side effects. Late presentation is of particular concern as this can affect morbidity and mortality. Factors including fear, denial, poor motivation, miscalculation of symptom severity, self-medication, advanced disease, bereavement, fatalism, carer exclusion, and poor clinician relationships are established contributors.3, 4, 5, 6 Cancer nurses are crucial in supporting patients to self-manage physical and psychological consequences of cancer and its treatments. Effective patient education—that engages people optimally in monitoring and managing symptoms and side effects—is imperative for patient safety.

Patients who are engaged in their care have better experiences and outcomes7 through improved physical and mental health8,9 and early identification of potentially life-threatening complications.3 A scoping review10 explored terms for patient involvement (eg, compliance, adherence, empowerment) and concluded that patient engagement is the best term for capturing power, motivation, and active choice to become knowledgeable and involved in their health care. Cancer nurses need to understand conditions that either hinder or promote patients’ engagement in their taking control of their care to maximize physical, psychological, and social well-being.

Epstein and Street's patient-centered communication in cancer care (PCC)11 model (Table 1) helps to articulate how nurses can positively engage with patients to promote better outcomes. The model incorporates six domains representing core-mediating functions of patient-clinician communication (Fostering healing relationships, Exchanging information, Responding to emotions, Managing uncertainty, Making decisions, and Enabling self-management) and additional factors moderating patient-centered communication and health outcomes.

The PCC model suggests that therapeutic relationships between health professionals and patients embodying trust, honesty, openness, and disclosure increase patients’ likelihood of engaging with self-care activities. Communication between professionals and patients can vary according to respective genders, ethnicity, age, and educational status. If they fail to connect, patients can be passive and submissive during consultations.12 Further, some services themselves can feel impersonal; chemotherapy services have been likened to a factory by patients.3

Studies show patients’ reluctance to contact clinicians they do not have a good relationship with3,13 or who have previously dismissed concerns.14 Others sometimes avoid bothering staff perceived as busy3,13,14 and/or contacting emergency helplines, opting instead to wait to see a member of staff they connect with.3

Patient engagement can be encouraged through nurses’ active listening, inviting patients to tell their stories and through relationship building over time.10 Cancer nurses are ideally placed to develop trusting and healing relationships with patients through connecting with them by enacting these behaviors, answering questions, solving problems and concerns, and delivering information in a measured and constructive manner across multiple consultations; information that includes key safety-related matters messages.

This domain suggests that most people with cancer and their families seek information—and by providing it, cancer nurses help relationship building, patient decision-making, and uncertainty management. Importantly, nurses should determine patients’ baseline knowledge and beliefs before imparting new information, be guided by patients’ and families’ agendas and concerns, and enhance motivation and confidence to engage in care.15 This is aided when the rationale for any desired behaviors is explained.3,16

However, one UK study17 incorporating nonparticipant observation of interactions between clinicians, patients, and carers during chemotherapy, and another exploring delayed presentation with neutropenic sepsis,3 found information delivery by clinicians often dispassionate, checklist-driven, assuming compliance, and poorly tailored to need or preference. This may be reflective of busy clinical environments that can compromise effective information exchange.18

Timing of information giving is also important. For example, patients can find information about neutropenic sepsis emotive and hard to assimilate before starting chemotherapy. It brings home the seriousness of a diagnosis and can exacerbate fears of dying.3 This needs to be factored into information exchange; information needs to be delivered sensitively, slowly, and returned to. Oakley et al (2017)3 determined that many patients prefer to understand clearly sepsis risk, actions to mitigate risk, and likely scenarios should sepsis manifest. Engagement can be engendered through asking what patients already know and what most concerns or frightens them. It is also important to assess barriers to learning including literacy, language, hearing, sight, or mental health issues, alongside any preferred learning media (eg, paper, online, audio, or video). Whatever the media, use of clear straightforward language is imperative, and summarizing is wise.

Tools that can enhance patient engagement include diaries, information sheets, alert cards, short films, and traffic light symptom reporting tools.19,20 Recent innovations include patient apps21 and group consultations (these can be guided by learning facilitators); group discussions and exercises enable peer-to-peer learning that patients and families can find therapeutic and helpful for coping. Delivery by learning facilitators, or by patient apps, can save cancer nursing resources.22 It is also important to recognize the affect of increased use of oral therapies in the metastatic breast cancer setting. The responsibility for self-medication and reporting of side effects can be overwhelming for patients who are also trying to manage the symptoms of disease and SACT side effects. The tools mentioned here can help with patient engagement with oral therapies.20,23,24

Responding to emotions is necessary as fears about cancer and treatments, and low mental mood generally, hinder successful information uptake and can lead to patients’ avoidance and poor engagement in advisable self-care.3

Low mental affect is common in patients with cancer. Global estimates suggest around 32% of people living with breast cancer (any stage) experience depression,25 and 20–58% experience anxiety around diagnosis and during treatment.26

As mentioned, learning about neutropenic sepsis can heighten treatment-related fears and fear of dying from cancer; these can be exacerbated in people with advanced disease and likely enhanced by concerned clinicians repeatedly stressing the urgency of calling the hospital if becoming unwell.3 Oakley et al (2017) found that repeated iteration of urgency related to neutropenic sepsis failed to translate into enhanced self-care or timely help-seeking.3

Thus, this domain suggests nurses should elicit emotional concerns before delivering information. This may be helped by reviewing patients’ notes to gain understanding of the person, their concerns, and context of their lives before starting nursing interactions. Checklists should be used with care as they can convey lack of empathy and hinder rapport and patient–professional connection.3,17

Uncertainty is the inability to accurately predict future illness events or outcomes.27 Cancer brings uncertainty, with its associated fear of recurrence or disease progression and potential for limiting life. For people with advanced breast cancer dealing with uncertainty is an ongoing concern, impacting on many areas of their lives.28 Inability to predict symptoms, appraise them as normal/abnormal, and fears for the future evoke considerable distress,27,29 diminish sense of control,27,30, 31, 32 and engagement in self-care.3 Uncertainty can unwittingly be exacerbated by clinicians discussing uncertainty over complex therapeutic decisions, equivocal treatment outcomes, and revisions to staging or treatment required following new clinical information (to name but a few).

Patients with cancer value certainty and those undergoing treatment typically seek clarity over treatment plans, likely side effects, and side effect management33, 34, 35 to prepare for life during it.13,34,36,37 The PCC managing uncertainty domain suggests cancer nurses should target information to individual patient needs and develop an agreed-on plan for dealing with uncertainty. Importantly, relationships with carers, other patients, and clinicians can also modify uncertainty.38

This domain suggests that most patients prefer to make treatment-related decisions in partnership with clinicians through weighing up pros and cons and their personal beliefs. This requires them to be well informed about the benefits and risks of treatments and party to open and honest discussions with clinicians about them. Historically, paternalism presided, and clinicians were observed underplaying the seriousness of cancer or treatment side effects,39,40 potentially resulting in mismatches between patients’ needs for information and that provided by clinicians. One study reported a clear mismatch between patients’ need for chemotherapy information and that provided by clinicians regarding chances of cure (94.6% versus 34.3%) and effectiveness of chemotherapy in other patients (90% versus 48.5%).41

However, it appears that challenges persist over patients being sufficiently informed of either treatment risks, notably regarding neutropenic sepsis, and patients’ personal risk of developing it3,42 or that advanced cancer can develop after primary breast cancer treatment.43 Arguably, clinicians may limit information provided about severe treatment side effects (eg, sepsis) over fear of patients refusing chemotherapy if fully explained.3 However, some patients have believed that they suffered unnecessarily due to having insufficient information on managing chemotherapy symptoms.44 This research highlights significant issues related to informed consent for chemotherapy and risks associated with power imbalances in favor of clinicians during decision-making consultations.12

Intentional nonadherence to oral chemotherapy self-medication for breast cancer has been associated with women feeling out of control with treatment-related decision making.45 This has clear consequences for patient safety and treatment efficacy; patient engagement in treatment decision-making can be critical. Tobiana et al (2020) in their review10 highlighted the value of providing ongoing information about health status, investigations, and procedures and helping weigh alternative choices during decision-making.

The domain focuses on clinicians’ roles in enabling patients to be active and responsible participants in care. Research suggests these roles can be enacted better in people with cancer. The study referenced previously3 showed clinicians’ style of information giving about neutropenic sepsis tended to frighten patients and inhibit their taking active responsibility for it.3 A seminal piece of work by Bandura (1988)46 identified the association between negative stress reactions (like being anxious/frightened) and reduced ability to perform. It is important to recognize that carers (family members/friends) are equally affected by treatment-related stress and that this can affect how they perform in their caring role when deciding whether and when to seek help for an unwell patient.

Conditions for enabling self-management appear inadequate at present. Engaging patients and their carers in patients’ care can, however, be complex. Interventions for enabling it are generally underpinned by behavior change theory, but there is limited evidence of their effectiveness. Further, there is little training for cancer nurses in enabling self-management, and organizations generally do not facilitate the integration of patient engagement into routine care.47,48 Vulnerable or marginalized groups may find it especially difficult to engage in care. A systematic review of self-management interventions for older people with cancer concluded that frailty compromises the ability to engage with self-management during cancer and that few self-management interventions have been developed for this group.49

Cancer nurses should assess patients’ ability for self-management, such as language issues, comorbidities, physical symptoms, educational and social status, normal routine and priorities, carer support, emotional ability to engage, and prior illness experience. Further, Tobiana et al's review (2020)10 identified health professionals’ actions that encourage patients’ self-management including helping patients with goal-setting, providing support in monitoring symptoms, and preparing them well for administering medications. Support in monitoring symptoms can be enhanced through providing patients/carers with traffic light tools20,24 that can help patients and carers recognize and report potentially life-threatening treatment-related symptoms. Traffic light tools can clarify symptom severity and frequency and legitimize symptoms to report.20,24 Further, patient and carer group consultations can also encourage self-management through facilitating mutual support, patient recall, and collective (patient/carer) engagement in symptom management.22