When Eating Becomes Torturous: Understanding Nutrition-Related Cancer Treatment Side Effects among Individuals with Cancer and Their Caregivers

Individuals living with cancer often experience multiple nutrition-related side effects from cancer treatment, including changes in taste and smell, nausea, diarrhea, loss of appetite, and pain during eating. These side effects can profoundly impact nutritional status and quality of life. The purpose of this study was to explore experiences with nutrition-related cancer treatment side effects among cancer patients and their family caregivers, the way they manage such side effects, and the resulting changes in food preferences and behaviors. Structured surveys and in-depth interviews were conducted. Interviews focused on the presence and management of treatment side effects, how those changes influenced food preferences, and the extent to which they interfered with quality of life. Most patients (72%) reported treatment side effects; 61% reported that these side effects impacted their eating and drinking. Common side effects included fatigue (58%), dry mouth (30%), nausea (24%), constipation (20%) and diarrhea (20%). Six overarching qualitative themes were identified: Spiral of side effects; Pain of eating; Burden of eating; Loss of taste/change in taste; Symptom management; and Solutions. The authors conclude with implications for food and nutrition practice—moving beyond traditional recommendations of what to eat or avoid—to consider the overall patient and caregiver experience.

This is what life with cancer looks like: exploring experiences of adolescent and young adults with cancer using two visual approaches

Introduction Talking about illness experience can be challenging for adolescents and young adults (AYAs) with cancer. Visual tools, in addition to spoken language, might make this easier, such as rich pictures and photovoice. We aimed to obtain a comprehensive view of the cancer experience of AYAs by using rich pictures and photovoice. Methods AYAs (18–35 years old) who had any type of cancer, or were in remission from cancer, were eligible. AYAs drew rich pictures about their experience of living with cancer and explained these during subsequent interviews. Some of the AYAs also participated in photovoice and spent two days with a photographer to make photos about their illness experience. Rich pictures and photos were first analyzed separately, using open coding, after which the identified themes were compared. Results Twelve AYAs made rich pictures (RPs), of whom seven also participated in photovoice. The two most predominant themes emerging from the data were struggles related to the future and defining one’s identity. The AYAs expressed concerns for the future related to relationships, education, and employment. Relating to defining one’s identity, many AYAs expressed that the cancer had a negative impact on their body- and self-image. The main themes were visible in the RPs as well as in the photovoice; however, subtle differences in sub-themes were found. Conclusions We found that cancer has an effect on many aspects of AYAs’ lives. Further research on how the identified themes play a role in the lives of AYAs with cancer is needed.

Integration of Narratives Into Mixed Methods Research: An Example From a Study on the Value of Social Support to Older People With Cancer

While many advances have been made mixing other methodologies with mixed methods research (MMR), there are few examples of narrative MMR or detailed procedures for integrating the narrative approach into mixed methods studies. This article contributes to the MMR field an example of integrating narratives in MMR by applying a methodological approach that is shaped by stories. The example integrated findings from cancer narratives with survey data to explore emotional support and quality of life of older people living with cancer. Integration was achieved by, firstly, following a thread through the research phases, and secondly, by using joint displays to align findings. The narrative MMR methodology presented is a tool for putting stories at the center of the research process.

Role-reversals in Caregiving: Case Studies of Two Women Living With Late Stage Cancer

Many studies have examined the effects of caregiving burden and many others have focused on the effects of having a caregiver (Haynes-Lewis et al., 2018; Trevino, Prigerson, & Maciejewski, 2018; Semere et al., 2020). However, there is little data on the experience of role reversal, once responsible for caring for others and now being cared for while living with cancer. This project aims to identify ways in which women living with cancer cope with the internal struggles of receiving care. The current project is a case study of two females, one age 67, NHW, with a breast cancer diagnosis and one age 60, Black, with an ovarian cancer diagnosis, who once were caregivers and are now being cared for by family. Two semi-structured interviews were conducted that were approximately 60 minutes each. The study data are from a larger project focused on the self-perception of older women with late-stage cancer. Four independent researchers used thematic analysis to uncover common themes of coping between the two women receiving care. The themes uncovered were acceptance of the loss of autonomy, positive death attitudes, good relationships with their caregivers, and religiosity were identified and coded as coping strategies. The qualitative data showed that the use of these coping strategies helped the women be more accepting to care with less internal conflict. Future research should focus on generalizing these findings on a larger sample and use the data to help cancer patients better accept care from others.

Perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt

Background Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. The study aimed to assess the perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt. Method Total number of 500 oncology children's family care providers was recruited. A descriptive research design was utilized. Researchers used three tools as Structured Interview Questionnaire to assess the participants' knowledge and perceived barriers, Attitude toward palliative care Likert Scale, and Reported Practices Observational Checklist. The study was conducted in outpatient cancer clinics affiliated with El-Nasr governmental hospital located at Port Said governorate. Results 51.8% of the total oncology children's family care providers had sufficient knowledge, 78.6% had a positive attitude, while,76.8% of them had inappropriate Practice towards palliative care. Significance of results The pediatric oncology family care providers had sufficient knowledge and a positive attitude toward palliative care, but their practices were inappropriate. Also, the majority of participants identified Lack of family care providers training in pediatric palliative care and improper communication between the health team and family care providers as the main barriers to providing palliative care to children. Providing a palliative care training program for family caregivers through continuing professional development is highly recommended besides further research studies using large probability samples at different settings.

‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic

Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. Aim: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. Design: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. Setting/ participants: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. Results: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients’ and carers’ emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. Conclusion: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.