Objective: Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. Methods: This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semistructured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. Results: Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. Conclusions: Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer. K E Y W O R D S burden, caregiver, carer, distress, head and neck cancer, oncology, phenomenology, psychooncology, qualitative 1 | BACKGROUND Approximately 4400 patients are diagnosed with head and neck cancer (HNC) per annum in Australia, with 72% of cases occurring in males over the age of 40 years. 1 Previously, most HNCs were attributed to tobacco and alcohol use. 2 In recent years, the proportion of patients with human papillomavirus (HPV) related HNCs has increased. 3 Prognosis varies depending on disease staging, site, histopathology, HPV status, medical status, smoking and other host factors, with overall 5 year survival rates of approximately 69%. 4 Treatments include surgery, chemotherapy, or radiation therapy alone or in combination. 2
Unlike disciplines which focus on skill development from year one of a bachelor’s degree, training in psychology in Australia follows the scientist-practitioner model. According to this model, an undergraduate psychology degree should focus on the scientific principles underpinning the discipline and provide a foundation for the development of professional skills in graduate school. However, most Australian psychology undergraduates do not continue into graduate school, and concerns have been raised about their lack of applied skills and work-readiness. Work-integrated learning (WIL) refers to strategies aimed at providing students with practical experiences (e.g., fieldwork, placements, and internships) directly related to their course of study. The objective of WIL is to increase work-readiness. Accreditation standards coupled with the norms of the discipline have historically prevented the inclusion of typical WIL experiences in Australian undergraduate psychology degrees. However, one particular type of WIL activity—the undergraduate research experience (URE)—is particularly suited to psychology. In a typical URE, students collaborate with faculty to conduct research designed to make an original contribution to their field. The current study is a qualitative investigation of stakeholder perceptions of a competitive summer URE program ran from 2012 to 2016. Six faculty members and seven undergraduate students were engaged in semi-structured interviews about their URE experiences. Constructed themes broadly reflected the benefits and challenges of the program and included work-readiness and additional research experience, networking and teamwork, publication, quality of experience and equity of opportunities. Faculty members and students spoke favorably of their UREs in most cases, although issues of administration and financial concerns were mentioned consistently, as were concerns about the length, timing, and nature of projects. Students reported skill development and networking as two of the key benefits of their participation in the program, and article publication was seen as particularly beneficial to career prospects. Our findings suggest that student co-authored publications resulting from UREs are possible, but careful thought is required to optimize their likelihood. Overall, this research adds to a growing literature suggesting that UREs can confer a range of benefits to Australian psychology schools related to increased research capacity and student satisfaction.
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