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1.
J Cancer Surviv ; 18(1): 68-78, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37340209

RESUMO

PURPOSE: Youth diagnosed with acute lymphoblastic leukemia (ALL) and their caregiver's experience a myriad of challenges in all domains of health that extend beyond treatment. Yet, little is known about how the cancer experience, and recollections associated with the experience, impact survivorship. We explored pediatric ALL survivors' and their caregivers' autobiographical memories of the cancer experience from diagnosis onwards. METHODS: Survivors of ALL, and one of their caregivers, were recruited through a local clinic. Survivors and their caregivers completed a demographic survey and semi-structured, private, one-on-one interviews. Demographic information were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis at the level of the individual and dyad. RESULTS: Insights from survivors (N = 19; Mage = 15.3 years) and their caregivers (n = 19; Mage = 45.4 years) were captured. Analyses generated two themes contingent on role (i.e., survivor or caregiver): (1) It is hard to recall my cancer experience and (2) We did as much as we could to manage our child's cancer experience and two unified themes (present in both survivors and their caregivers): (3) It took a village to get through the cancer experience and (4) The cancer diagnosis and experience has had a lasting impact. CONCLUSIONS: Findings highlight the varied and long-lasting ways cancer impacts survivors of pediatric ALL and their caregivers. Survivors had difficultly remembering their experience or felt that information was withheld and were acutely aware of their caregiver's distress. Caregivers were cautious and intentionally limited the information they shared. IMPLICATIONS FOR CANCER SURVIVORS: Survivors desired to be included within, or told about, decisions related to their healthcare and were acutely aware of their caregiver's distress. Efforts should be made to communicate with survivors (from diagnosis onward) openly and to consider strategies to minimize the short- and long-term impacts of pediatric ALL among survivors and their caregivers.


Assuntos
Sobreviventes de Câncer , Memória Episódica , Neoplasias , Adolescente , Humanos , Criança , Pessoa de Meia-Idade , Sobreviventes , Pais , Neoplasias/terapia , Cuidadores
2.
J Pediatr Psychol ; 43(3): 285-293, 2018 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-29048519

RESUMO

Background: Chronic pain is a pervasive condition in adolescence and is associated with significant psychological distress, functional disability, social isolation, and decreased quality of life for a subset of affected youth. There is a paucity of research examining potential resilience factors and adaptive processes in pediatric chronic pain. Benefit finding refers to the process of perceiving positive consequences in the face of adversity. Previous research on benefit finding in pediatric samples (e.g., oncology; acute injury) has yielded inconsistent results. This is the first study to examine this construct in youth with chronic pain. Objective: The objective of the current investigation was to extend previous research on benefit finding to adolescents with chronic pain and to assess relationships between benefit finding, internalizing mental health symptoms (i.e., anxiety, depression, and posttraumatic stress disorder [PTSD]), pain outcomes (pain intensity and interference), and quality of life. Methods: Psychometrically sound self-report measures of benefit finding, anxiety, depressive, and PTSD symptoms, pain intensity, pain interference, and quality of life were completed by 145 youth (67.4% female, Mage = 13.3 years, SD = 2.6), referred to a tertiary-level chronic pain program. Results: Benefit finding was significantly correlated with internalizing mental health symptoms, pain outcomes, and quality of life. Further, benefit finding significantly predicted children's self-reported pain intensity, pain interference, and quality of life when controlling for age and sex. Conclusions: Findings suggest that benefit finding is associated with internalizing mental health symptoms, pain outcomes, and quality of life in youth with chronic pain. Future research examining this construct is warranted.


Assuntos
Ansiedade/psicologia , Dor Crônica/psicologia , Crescimento Psicológico Pós-Traumático , Qualidade de Vida/psicologia , Resiliência Psicológica , Transtornos de Estresse Pós-Traumáticos/psicologia , Adolescente , Criança , Depressão/psicologia , Feminino , Humanos , Masculino
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