“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma
MetadataShow full item record
© 2021 The Authors. Published by MDPI Publishing.
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.
Showing items related by title, author, creator and subject.
The complexity of diagnosing sarcoma in a timely manner: Perspectives of health professionals, patients, and carers in AustraliaWeaver, Rhys; O'Connor, Moira ; Carey Smith, R.; Halkett, Georgia (2020)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 ...
“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with SarcomaO’Connor, M.; Smith, G.; Pantaleo, A.; Haywood, D.; Weaver, R.; Halkett, Georgia (2021)Sarcomas are a group of rare and aggressive cancers, which develop in bones and connec-tive tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are ...
Quality of life in Alzheimer's disease: Different factors associated with complementary ratings by patients and family carersBosboom, P.; Alfonso, Helman; Eaton, J.; Almeida, O. (2012)Background: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling ...