Peter M Barrett1,2,3, Louise Mullen1, Triona McCarthy1. 1. HSE National Cancer Control Programme, Dublin 1, Ireland. 2. School of Public Health, Western Gateway Building, University College Cork, Cork, Ireland. 3. Wellcome Trust/HRB Irish Clinical Academic Training (ICAT) Programme, University College Cork, Cork, Ireland.
Abstract
OBJECTIVE: To establish the major expressed psychological needs of adult survivors of childhood cancer living in Ireland. METHODS: Seven focus groups were conducted with adult survivors of childhood cancer and their parents in 2018. Survivors were invited to participate if they were diagnosed with cancer before age 18. RESULTS: Thirty-three participants (15 survivors, 18 parents; 27 female, 6 male) were included. They had experienced a range of haematological and solid tumours. Five themes were generated: (a) Enduring psychological impact on survivors; many survivors experience delayed trauma and mental health crises in adulthood. (b) Enduring psychological impact on family members; parents and siblings have unmet psychological needs relating to the family's experience of cancer. (c) Enduring impact on family dynamics; survivors and parents expressed fear and guilt relating to cancer which impacted on family interactions. (d) Challenges accessing support; psychological support services are inadequate to meet expressed needs. (e) Desired model of care; no single service model appeals to all survivors, and flexibility is required in the delivery of psychological support. CONCLUSION: Adult survivors of childhood cancer and their family members experience enduring psychological effects relating to their diagnosis and treatment. Psychological support services are inadequate to meet the expressed needs of this growing population.
OBJECTIVE: To establish the major expressed psychological needs of adult survivors of childhood cancer living in Ireland. METHODS: Seven focus groups were conducted with adult survivors of childhood cancer and their parents in 2018. Survivors were invited to participate if they were diagnosed with cancer before age 18. RESULTS: Thirty-three participants (15 survivors, 18 parents; 27 female, 6 male) were included. They had experienced a range of haematological and solid tumours. Five themes were generated: (a) Enduring psychological impact on survivors; many survivors experience delayed trauma and mental health crises in adulthood. (b) Enduring psychological impact on family members; parents and siblings have unmet psychological needs relating to the family's experience of cancer. (c) Enduring impact on family dynamics; survivors and parents expressed fear and guilt relating to cancer which impacted on family interactions. (d) Challenges accessing support; psychological support services are inadequate to meet expressed needs. (e) Desired model of care; no single service model appeals to all survivors, and flexibility is required in the delivery of psychological support. CONCLUSION: Adult survivors of childhood cancer and their family members experience enduring psychological effects relating to their diagnosis and treatment. Psychological support services are inadequate to meet the expressed needs of this growing population.
Authors: Christina G Salley; Cynthia A Gerhardt; Diane L Fairclough; Andrea F Patenaude; Mary J Kupst; Maru Barrera; Kathryn Vannatta Journal: J Dev Behav Pediatr Date: 2014-09 Impact factor: 2.225
Authors: Lori Wiener; Anne E Kazak; Robert B Noll; Andrea Farkas Patenaude; Mary Jo Kupst Journal: Pediatr Blood Cancer Date: 2015-09-23 Impact factor: 3.167
Authors: Marieke Van Schoors; Line Caes; Naomi B Knoble; Liesbet Goubert; Lesley L Verhofstadt; Melissa A Alderfer Journal: J Pediatr Psychol Date: 2017-01-01
Authors: James G Gurney; Kevin R Krull; Nina Kadan-Lottick; H Stacy Nicholson; Paul C Nathan; Brad Zebrack; Jean M Tersak; Kirsten K Ness Journal: J Clin Oncol Date: 2009-02-17 Impact factor: 44.544