Shiraz I Mishra1, Heidi Rishel Brakey2, Miria Kano3, Frances R Nedjat-Haiem4, Andrew L Sussman3. 1. Department of Pediatrics, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 10 5590, Albuquerque, NM 87131, USA; Department of Family and Community Medicine, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5040, Albuquerque, NM 87131, USA; University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, 1201 Camino de Salud, Albuquerque, NM 87131, USA. Electronic address: smishra@salud.unm.edu. 2. University of New Mexico Clinical and Translational Science Center, University of New Mexico Health Sciences Center, 1 University of New Mexico, Albuquerque, NM 87131, USA. 3. Department of Family and Community Medicine, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5040, Albuquerque, NM 87131, USA; University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, 1201 Camino de Salud, Albuquerque, NM 87131, USA. 4. New Mexico State University, School of Social Work, 1335 International Mall, Las Cruces, NM 88003, USA.
Abstract
PURPOSE: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL. METHODS: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure. RESULTS: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care. CONCLUSIONS: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.
PURPOSE: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL. METHODS: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure. RESULTS: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care. CONCLUSIONS: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.
Authors: Dana Ketcher; Amy K Otto; Susan T Vadaparampil; Richard E Heyman; Lee Ellington; Maija Reblin Journal: J Pain Symptom Manage Date: 2020-12-19 Impact factor: 5.576