The adolescent cancer experience: loss of control and benefit finding
ABSTRACT Developmental goals of adolescence include attaining confidence in independent decision making and a positive image of the self, others and surrounding world. A diagnosis of cancer during adolescence has the potential to impact on successful achievement of these goals. This study examined the 'adolescent cancer experience' from the perspective of young people. In-depth semi-structured interviews were conducted with 10 young people (16-22 years old) who had been diagnosed with cancer during adolescence. Thematic analysis of interview transcripts revealed two latent themes: loss of control and benefit finding. Adolescents reported that feelings of loss of control resulted in a sense of frustration, feelings of inadequacy and anger, and non-compliance with treatment. Perceived benefits of cancer experiences included improved personal attributes, strengthened relationships and material gains. These themes have not previously been well described in this population. The findings underline the need for effective communication, ongoing psychological support and service flexibility when providing care for adolescents with cancer.
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ABSTRACT: Understanding how cancer symptom distress and resilience contribute to quality of life (QoL) in adolescent cancer and may potentially help these patients achieve better health-related outcomes. The objective of this study was to describe cancer symptom distress, QoL, and resilience in adolescents with cancer and to determine whether resilience is a mediating variable. Forty adolescent cancer patients were recruited, and data were collected via a demographic questionnaire, the Cancer Symptom Distress Scale, the Resilience Scale, and the Minneapolis-Manchester Quality of Life Scale. Pearson's correlation, multiple regressions, and the Sobel test were conducted. Both resilience and cancer symptom distress were regressed against QoL, accounting for 62.1% of observed variation in QoL scores. The bootstrap result estimated the true indirect effect between -.0189 and -.0024, with a 95% confidence interval. Resilience mediates the relationship between cancer symptom distress and QoL. Clinical use of a resilience measure, for example to use in developing and evaluating interventions focused on enhancing resilience, may be practical for nurses. © 2015 by Association of Pediatric Hematology/Oncology Nurses.Journal of Pediatric Oncology Nursing 01/2015; DOI:10.1177/1043454214563758 · 0.87 Impact Factor
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ABSTRACT: PURPOSE: This article describes parental perspectives on the helpfulness and meaningfulness of a behavioral health music therapy intervention targeted to adolescents/young adults (AYA) with cancer undergoing stem cell transplantation. We demonstrate how qualitative methods may be used to understand critical aspects of an intervention and mechanisms by which the intervention impacts the target AYA outcomes of resilience and quality of life. METHODS: A qualitative descriptive design was used to obtain parents' perspectives. A maximum-variation purposive sampling technique was used to sample 16 parents whose AYA had been randomized to the intervention group. A semistructured open-ended interview was conducted between 100 and 160 days after the AYA's transplant. RESULTS: Results were grouped into three categories: (1) helpfulness and meaningfulness of the intervention to AYA adjustment to the transplantation experience; (2) helpfulness and meaningfulness of the intervention for parents; and (3) AYA ability to participate in the intervention during the acute phase of transplant. CONCLUSIONS: Parents observed and interacted with their AYA who participated in a targeted behavioral intervention. Thus, parents were able to describe mechanisms through which the intervention was helpful and meaningful for the AYA and indirect personal benefits for themselves. The results suggest the importance of the targeted outcomes identified in the Resilience in Illness Model and mechanisms of action in the Contextual Support Model of Music Therapy, and identify approaches for future study.Journal of Adolescent Health 02/2013; 52(2):170-178. DOI:10.1016/j.jadohealth.2012.05.010 · 2.75 Impact Factor
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ABSTRACT: OBJECTIVES: To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. DESIGN: Systematic review and meta-synthesis. DATA SOURCES: Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. REVIEW METHODS: Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes. RESULTS: Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. CONCLUSIONS: The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration.International journal of nursing studies 10/2012; DOI:10.1016/j.ijnurstu.2012.09.011 · 2.25 Impact Factor