“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. D...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-05-01
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| Series: | Cancers |
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| Online Access: | https://www.mdpi.com/2072-6694/13/11/2670 |
| _version_ | 1797532289066860544 |
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| author | Moira O’Connor Greta Smith Ashleigh Pantaleo Darren Haywood Rhys Weaver Georgia Kb Halkett |
| author_facet | Moira O’Connor Greta Smith Ashleigh Pantaleo Darren Haywood Rhys Weaver Georgia Kb Halkett |
| author_sort | Moira O’Connor |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-10T10:57:00Z |
| format | Article |
| id | doaj.art-dad9c29c1d1f491a925b11ee0a2fa00d |
| institution | Directory Open Access Journal |
| issn | 2072-6694 |
| language | English |
| last_indexed | 2024-03-10T10:57:00Z |
| publishDate | 2021-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Cancers |
| spelling | doaj.art-dad9c29c1d1f491a925b11ee0a2fa00d2023-11-21T21:51:24ZengMDPI AGCancers2072-66942021-05-011311267010.3390/cancers13112670“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with SarcomaMoira O’Connor0Greta Smith1Ashleigh Pantaleo2Darren Haywood3Rhys Weaver4Georgia Kb Halkett5WA Cancer Prevention Research Unit, School of Population Health, Discipline of Psychology, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaWA Cancer Prevention Research Unit, School of Population Health, Discipline of Psychology, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaWA Cancer Prevention Research Unit, School of Population Health, Discipline of Psychology, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaWA Cancer Prevention Research Unit, School of Population Health, Discipline of Psychology, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaSchool of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaSchool of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6102, AustraliaSarcomas 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.https://www.mdpi.com/2072-6694/13/11/2670sarcomacarersbereavementqualitativefamily |
| spellingShingle | Moira O’Connor Greta Smith Ashleigh Pantaleo Darren Haywood Rhys Weaver Georgia Kb Halkett “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma Cancers sarcoma carers bereavement qualitative family |
| title | “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma |
| title_full | “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma |
| title_fullStr | “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma |
| title_full_unstemmed | “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma |
| title_short | “It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma |
| title_sort | it s always been a second class cancer an exploration of the experiences and journeys of bereaved family carers of people with sarcoma |
| topic | sarcoma carers bereavement qualitative family |
| url | https://www.mdpi.com/2072-6694/13/11/2670 |
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