Leanne Monterosso1, Karen Taylor2, Violet Platt2, Elizabeth Lobb3, Meinir Krishnasamy4, Toni Musiello5, Caroline Bulsara6, Kendall Stratton7, David Joske8. 1. School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia; St John of God Murdoch Hospital, Western Australia, Australia; School of Nursing, Edith Cowan University Joondalup, Western Australia, Australia. Electronic address: leanne.monterosso@nd.edu.au. 2. School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia; Western Australia Cancer and Palliative Care Network, Perth, Australia. 3. Calvary Health Care, Kogarah, New South Wales, Australia; Cunningham Centre for Palliative Care, Darlinghurst, New South Wales, Australia; The University of Notre Dame, Darlinghurst, New South Wales, Australia. 4. Department of Nursing, University of Melbourne, Victoria, Australia; Research and Education Lead-Nursing, The Victorian Comprehensive Cancer Centre, Victoria, Australia. 5. University of Western Australia, Crawley, Western Australia, Australia. 6. School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia. 7. Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia; School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia. 8. University of Western Australia, Crawley, Western Australia, Australia; Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
Abstract
PURPOSE: To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors. METHODS: Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6-30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited. RESULTS: Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a "new normal". Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor. CONCLUSIONS: Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times post-treatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies. Crown
PURPOSE: To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors. METHODS: Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6-30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited. RESULTS: Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a "new normal". Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor. CONCLUSIONS:Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times post-treatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies. Crown
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