"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.

"We're on a Merry-Go-Round": Reflections of Patients and Carers after Completing Treatment for Sarcoma.

Sarcoma is a rare cancer that has a significant impact on patients' and carers' quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients' and carers' reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: "This journey is never going to be over", "But what happens when I am better?", and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

"It's Always Been a Second Class Cancer": An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma.

Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1-2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients' high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study.

OBJECTIVE: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. METHODS: An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi-structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. FINDINGS: Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. CONCLUSIONS: Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer-specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.

The complexity of diagnosing sarcoma in a timely manner: perspectives of health professionals, patients, and carers in Australia.

BACKGROUND: Prolonged diagnosis intervals occur more often in rare cancers, such as sarcoma. Patients with a delayed diagnosis may require more radical surgery and have a reduced chance of survival. Previous research has focused on quantifying the time taken to achieve a diagnosis without exploring the reasons for potential delays. The aim of this study was to explore patients', carers', and health professionals' perceived barriers to timely diagnosis and referral for treatment for sarcoma. METHODS: Semi-structured interviews were conducted with: health professionals working with sarcoma (n = 21); patients who have been diagnosed with sarcoma (n = 22); and carers of patients diagnosed with sarcoma (n = 17). Interview transcripts were analysed using thematic analysis. RESULTS: Four overarching themes were identified: patient perception of symptoms, difficulties of diagnosis, lack of experience, and availability of health services. Diagnosis was prolonged by the limited availability of health services, lack of prompt referrals to a sarcoma specialist centre, and diagnostic challenges. Intervals also occurred when patients underestimated the severity of their symptoms and did not seek prompt medical consultation. CONCLUSIONS: Patients with a potential sarcoma need to be promptly referred to a sarcoma specialist centre and additional diagnosis pathways need to be developed to reduce the rate of patients being referred to wrong specialists. Sarcoma education must be embedded in medical courses and professional development curricula. A public health approach should be taken to improve sarcoma knowledge and health seeking behaviours in the community.

The unmet needs of patients with sarcoma.

OBJECTIVE: Sarcoma is a rare cancer that imposes a significant burden on the lives of patients. Many survivors have long-term disability as a result of treatment and the disease. Patients often experience functional issues, poorer mental health, reduced quality of life, and interpersonal issues. There is a need to explore the unmet needs of sarcoma patients as it is unclear how these issues are being addressed. The aim of this study was to explore the unmet needs of patients who have been diagnosed with sarcoma. METHODS: The participants were individuals previously diagnosed with a sarcoma (n = 22). Participants completed a semi-structured interview about their unmet needs relating to sarcoma. The transcripts were analyzed using thematic analysis. RESULTS: Five overarching themes were identified: daily living, financial needs, lack of information, need for a community, and navigating the healthcare system. Participants reported a range of practical needs, including transport, limited understanding of their treatments, and financial issues. Participants also described a need to connect with people who had gone through similar experiences. CONCLUSIONS: Sarcoma patients have fundamental needs that affect their capacity to live their life in the best possible way. Health services need to better facilitate sarcoma patients at each stage of their experience by providing individualized referrals, support, and coordination. Support interventions are needed to help patients adjust to sarcoma and to improve their quality of life as an outpatient. Connecting patients with sarcoma support groups may provide them with more relevant and intimate support.