Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

Abstract

ObjectivesTo understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.DesignQualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.Participants26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.SettingParticipants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.Results45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies.ConclusionsOur findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable

“…Based on our previous experience of longitudinal studies (Calman et al, ), along with other qualitative longitudinal studies of patients with advanced disease including cancer, and their carers (Johnston et al, ; Murray et al, ; Walshe et al, ), the sample size has been chosen with the aim of ensuring sufficient participants to achieve data saturation, taking attrition into account, whilst balancing this with the large amount of data likely to be generated. If data saturation (Glaser & Strauss, ; Saunders et al, ) has not been reached after three interviews have been completed with 30 patients and 30 carers then, with agreement of the study advisory group and with appropriate regulatory permissions and approval from the funder, we will continue to interview additional patients and carers until saturation has been achieved and no new themes are emerging.…”

Family Process with Breast Cancer Patient in Indonesia

“…The patient's activity ability does indeed decrease during the disease process and treatment but still important to 'normalize' the patient to make sure they feel 'alive' and useful to others (Walshe et al, 2017). It certainly decreased the auxiliary load for ADL activity which is on the average increase in line with the improvement of conditions during the treatment process of the disease (Vahidi et al, 2016).…”

“…The family entrusted the professional health staff (Walshe et al, 2017) is a key form of emotional accompaniment, practice, and social support that positively impacts the patient and accompanies the treatment. The ambiguity of resignation is perceived as the dilemma faced by the caregiver for the limitation of their ability to care for the patient with the complexity of complaints and needs to lead to emotional distress (Regan et al (2015); Papastavrou et al (2012).…”

“…This gives a different effect to the communication experience with the professional staff. Because they learn from those, who experience the same thing as they share strategies to get through the problem (Walshe et al, 2017). The use of other treatment options such as traditional and alternative is still the most favorite in breast cancer patients such as Kota Bharu, Malaysia (Taib et al, 2007) who are still both Malay with Indonesia.…”

Early palliative care for those who care: A qualitative exploration of cancer caregivers’ information needs during hospital stays

“…In addition to information about cancer, cancer treatment and prognosis (McCarthy, ), Longacre, Galloway, Parvanta, & Fang () reported that, during the initial diagnosis stage, the majority of caregivers also have high informational needs related to their role as a caregiver for a cancer patient and the navigation through the medical system. Most caregivers, however, were unable to name exactly what kind of support they needed and did not know what they should know and whom to ask for specific information (Janda, Eakin, Walker, & Troy, ; Morris & Thomas, ; Walshe et al, ).…”