Return to valued activities: Survivors' experiences of adaptation and growth after treatment for head and neck cancer.

OBJECTIVE: The objective of this study was to explore the experiences of head and neck cancer (HNC) survivors who returned to valued activities to understand how they reconstruct their lives following HNC diagnosis and treatment. METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with adults diagnosed with any type of HNC in the previous 6 years. Reflexive thematic analysis was used to identify themes. RESULTS: HNC presents a unique trauma following which some survivors navigate paths back to meaningful activities. The experiences of HNC survivors who adapted to life after treatment described internal and external change and development, identified by three themes; Mindfulness; Gratitude; and Adaptation. CONCLUSION: People diagnosed with HNC frequently experience lasting effects and other survivorship issues, however some survivors were able to return to valued activities and recreate a meaningful lifestyle reflecting the possibility of post traumatic growth. This study provides insight into the experiences of head and neck cancer survivors who were able to make meaning and find internal and external growth following treatment. These findings can be used to inform advanced communication skills training for oncology health professionals and psychoeducational courses for people diagnosed with head and neck cancer in the future.

Silenced: Patients' experiences of voicelessness in head and neck cancer.

OBJECTIVES: The objective of this qualitative study was to explore patients' experiences of communicating with health professionals following a diagnosis of head and neck cancer (HNC). METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with people diagnosed with HNC. Thematic analysis was used to identify themes. RESULTS: The experience of losing the capacity for speech was experienced by survivors of HNC as distressing and traumatic. Voicelessness was not just a loss of physical speech, but a holistic experience of silencing. A number of tensions emerged including patients' experiences of losing their voice and then finding different ways to verbally express themselves; in interactions with health professionals there was a tension between abrupt, hurried communication and a slower, more mindful communication style. Sub-themes around communication style emerged where disparities between levels of health literacy were unaddressed, and patients' experienced a lack of empathy. Another tension experienced was between an old style medical model and the ideal of person-centred care and the biopsychosocial model of health. CONCLUSION: Whether HNC patients lose their voice temporarily, have periods of voicelessness, or are able to speak, but feel unheard, the treatment experience is too often one of disempowerment and silencing of their perspectives. PRACTICE IMPLICATIONS: Health professionals are challenged to find creative communication methods, to practice mindful listening, source speech pathology and adaptive technologies, and to facilitate communication that supports patients in expressing their values, preferences and needs.

"My life's not my own": A qualitative study into the expectations of head and neck cancer carers.

INTRODUCTION: Cancers that originate from the upper aerodigestive tract are collectively known as head and neck cancer. The most common are squamous cell carcinomas of the oropharynx, larynx, and oral cavity. Head and neck cancer patients experience significant physical and psychological changes because of the disease and treatment. There is a substantial strain on family carers who have extensive responsibilities over most aspects of the patient's life. The aim of the study was to understand the perspectives of being an HNC carer and their perceived expectations of the role. METHODS: The study adopted a qualitative research design with a social constructionist epistemology. Interviews were conducted with 20 carers who were currently caring for someone diagnosed with head and neck cancer. RESULTS: Three overarching themes were identified: taking responsibility for the patient's nutrition, navigating a new and different relationship, and "my life's not my own." Participants felt responsible for ensuring the patient was eating and became increasingly frustrated when the patient was unable to intake food. Carers prioritised the patients' needs at the expense of their own, and several came to resent the role. CONCLUSION: Carers' expectations of their role informed how they approached giving care. Carers need to be supported from diagnosis and encouraged to prioritise their own wellbeing.

'I Didn't Even Recognise Myself': Survivors' Experiences of Altered Appearance and Body Image Distress during and after Treatment for Head and Neck Cancer.

PURPOSE: Preparation for head and neck cancer treatment is focused on practicalities of treatment. Little or no time is spent prior to treatment discussing aesthetic results of treatment or the psychosocial impact of living with an altered appearance after treatment. The objective of this study was to explore the experiences of survivors of head and neck cancers, with a focus on the psychosocial impact of altered appearance. METHODS: A qualitative research approach based on social constructionist theory was used. Twenty-one semi-structured interviews were conducted with survivors of head and neck cancer who had been diagnosed in the previous six years. Thematic analysis was used to identify themes. RESULTS: People diagnosed with HNC reported feeling rushed into treatment, with adequate procedural preparation but little or no preparation related to appearance. The main themes included: Preparation (sub-themes: Decision-making; and Preparation for Altered Appearance); Altered Appearance (sub-themes: Weight Loss; Face, Skin and Hair Changes; and Reconstructive Surgery); and Consequences (sub-themes Reactions from Others; Adapting to Altered Appearance). CONCLUSIONS: Body image distress related to altered appearance, contributed to psychosocial issues for many people diagnosed with head and neck cancer. Current practice provides information pre-treatment about many aspects of coping; however, the subject of appearance is not routinely addressed. Communication skills training for health professionals that improves their comfort and sensitivity in discussing and conveying compassion around issues of altered appearance, body image, and trauma, is needed to decrease suffering for survivors, support healthy adaptation to living with altered appearance, and increase their satisfaction with health care.

Burnout or Fade Away; experiences of health professionals caring for patients with head and neck cancer.

PURPOSE: The oncology workforce has been found to have high risk of burnout; however, limited research has explored the experiences of health professionals working with head and neck cancer patients. The objective of this qualitative study was to explore the experiences of health professionals who work directly with patients diagnosed with head and neck cancers, with a focus on work-life balance, mental health and wellbeing. METHOD: A total of 21 in-depth semi-structured interviews were conducted with health professionals including radiation oncologists, medical oncologists, nurses, and associated medical and allied health professionals. A qualitative research approach based on social constructionist theory was used. Thematic analysis was used to identify and code themes. RESULTS: Five main themes emerged: 1. Conscientiousness; 2. Empathy; 3. Challenges; 4. Coping; and 5. Burnout or Fade Away. Challenges included sub-themes of Time & Resource Constraints, Work-Life Imbalance, Patients with Complex Needs, and Lack of Self-Care. CONCLUSION: It is vital to the sustainability of head and neck oncology services that this highly skilled workforce is retained. The development of interventions that will reduce the risk of burnout and improve retention and capacity of health professionals may include advanced communication skills training, trauma sensitivity training, self-compassion and stress management skills.