Personal Narratives, Coping, and Quality of Life in Persons Living With HIV

Macapagal, Kathryn; Ringer, Jamie M.; Woller, Shannon E.; Lysaker, Paul H.

doi:10.1016/j.jana.2011.08.011

Cited by 7 publications

(7 citation statements)

References 11 publications

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“…Adapting to these changes can sometimes be challenging, requiring an approach that reconciles the particularities related to HIV, and the subject's perception in his/her biopsychosocial context. (3) Currently, living with HIV requires more than only treating the disease, because PLWHA daily have to deal with transdisciplinary problems involving depression symptoms, stigma, discrimination, and adverse effects related to the therapy regimen. (4) Based on these problems, the objective of this study was to identify and explore the dimensions of the difficulties faced by people living with HIV/ Aids in the management of the disease.…”

Section: Introductionmentioning

confidence: 99%

Dificuldades do viver com HIV/Aids: Entraves na qualidade de vida

et al. 2017

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Objective: To identify and explore the dimensions of the difficulties faced by people living with HIV/Aids in the disease management. Methods: A qualitative, descriptive, exploratory study was developed in Specialized Care Services, with 26 patients. The recorded interviews were transcribed, and then processed and analyzed by means of descending hierarchical classification. Findings were based on the collective subject discourse. Results: Five classes were obtained: "Intrafamilial prejudice and its impact on coping with the disease"; "Social prejudice: macro environment impacts"; "Difficulties in managing the risk of HIV/Aids transmission and its implications on partnerships", "Maintenance of high rates of HIV/ Aids treatment adherence: qualifying the service" and "Quality of life promotion for people living with HIV/Aids". Conclusion: The difficulties experienced go far beyond the disease, with central, intimate aspects, and are linked to prejudice, which hinders their personal, professional and affective development, expanding into abstract macro-concepts such as quality of life. ResumoObjetivo: Identificar e explorar as dimensões das dificuldades enfrentadas por Pessoas Vivendo com HIV/Aids no manejo da doença. Métodos: Estudo descritivo, exploratório, de abordagem qualitativa desenvolvido em Serviços de Atendimento Especializado, com 26 pacientes. As entrevistas gravadas foram transcritas e posteriormente, processadas analisadas pela Classificação Hierárquica Descendente. Os achados foram fundamentados no Discurso do Sujeito Coletivo. Resultados: Obteve-se cinco classes: "O preconceito intrafamiliar e seu impacto no enfrentamento da doença"; "Preconceito social: os impactos do macroambiente"; "As dificuldades em gerenciar o risco de transmissão do HIV/Aids e as implicações em parcerias", "A manutenção de altas taxas de adesão ao tratamento do HIV/Aids: qualificando o serviço" e " Promovendo a qualidade de vida em pessoas vivendo com HIV/Aids". Conclusão: As dificuldades experienciadas vão muito além da doença, tomando aspectos íntimos, centrais ligadas ao preconceito, que impede seu desenvolvimento pessoal, profissional e afetivo expandindo-se a macro-conceitos abstratos como qualidade de vida.

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Section: Introductionmentioning

confidence: 99%

Dificuldades do viver com HIV/Aids: Entraves na qualidade de vida

et al. 2017

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“…A strong clinician-patient relationship is associated with greater social functioning and quality of life in YHIV (Macapagal et al 2012 ). A strong clinician-patient relationship is associated with greater social functioning and quality of life in YHIV (Macapagal et al 2012 ).…”

Section: Relational Impactmentioning

confidence: 96%

“…The quality of HIVinfected patients' personal relationships is associated with how adaptively they manage the diagnosis and may predict their ability to cope (Macapagal et al 2012 ). The quality of HIVinfected patients' personal relationships is associated with how adaptively they manage the diagnosis and may predict their ability to cope (Macapagal et al 2012 ).…”

Section: Relational Impactmentioning

confidence: 99%

Children and Young People Living with HIV/AIDS

Liamputtong¹

2016

Cross-Cultural Research in Health, Illness and Well-Being

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This new series examines determinants of health from a cross-cultural perspective. The focus of this perspective is on factors which could infl uence and determine the health and well-being of people. These factors include biological and genetic factors; health behaviors; socio-cultural and socio-economic factors and environment factors. This series fi lls a gap by including books which are research-based and contain diverse issues relevant to determinants of health including emerging health issues, such as HIV/AIDS and other infectious and non-infectious diseases/illnesses from a cross-cultural perspective. Volumes in the series will be a valuable resource for researchers and students in sociology, quality of life studies, anthropology, medicine, public health, social work and medicine.More information about this series at

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“…As with most research into QoL, including health-related QoL (HRQoL), in other populations ( Lysaker et al., 2005 ), research into PLWH's QoL is overwhelmingly quantitative (see e.g., Fredriksen-Goldsen et al., 2015 ), generally relying on such surveys as the WHO-QOL HIV-BREF (see e.g., Cho et al., 2019 ; Kteily-Hawa et al., 2019 ) or seeking to devise similar instruments designed to measure QoL and/or identify factors that might increase it (see e.g., Brown et al., 2018 ; Webster, 2019 ). Other scholars apply quantitative measures to narrative accounts of living with HIV (see e.g., Macapagal et al., 2012 ) to identify pre-selected factors linked to QoL in previous research. Yet, while widely seen as a valuable means of collecting data from sizeable populations to provide a cross-sectional assessment of QoL, predict treatment success ( Haraldstad 2019 , 2642), compare key factors across populations, identify disparities, and inform health treatment and policy, quantitative studies of QoL are subject to a range of critiques.…”

Section: Introductionmentioning

confidence: 99%

How older people living with HIV narrate their quality of life: Tensions with quantitative approaches to quality-of-life research

Rosenfeld

Anderson

Catalán³

et al. 2021

SSM - Qualitative Research in Health

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This article draws on life-history interviews with older (aged 50+) people living with HIV in England to uncover the interpretive practices in which they engaged as they evaluated their own quality of life (QoL). Our paper highlights the distinctive insights that biographical and narrative approaches can bring to QoL research. While accounts of subjectively ‘poor’ QoL were relatively straightforward and unequivocally phrased, accounts of subjectively ‘good’ and ‘OK’ QoL were produced using complex interpretive and evaluative practices. These practices involved biographical reflection and contextualization, with participants weighing up and comparing their current lives' ‘pros’ and ‘cons’, their own lives with the lives of others, and their present lives with lives they had imagined having at the time of interview. Thus, ‘good’ and ‘OK’ QoL were constructed using practical, relational, and interpretive work – features of QoL analytically unavailable in quantitative data gathered through standardised measures (including our own survey data collected from these same participants). Our findings underscore the uneasy fit between QoL's quantitative measurement and its subjective understandings and evaluations, on the one hand, and the interpretive work that goes into achieving these understandings and evaluations, on the other.

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Personal Narratives, Coping, and Quality of Life in Persons Living With HIV

Cited by 7 publications

References 11 publications

Dificuldades do viver com HIV/Aids: Entraves na qualidade de vida

Dificuldades do viver com HIV/Aids: Entraves na qualidade de vida

Children and Young People Living with HIV/AIDS

How older people living with HIV narrate their quality of life: Tensions with quantitative approaches to quality-of-life research

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