The Role of Spirituality and Religiosity in Persons Living With Sickle Cell Disease

Clayton-Jones, Dora L.; Haglund, Kristin

doi:10.1177/0898010115619055

Cited by 30 publications

(21 citation statements)

References 26 publications

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“…In the United States alone, SCD accounts for an average of 197,000 emergency room visits annually, with a hospitalization rate of 29% [15]; 113,098 hospital admissions per year; and, $500 million in annual medical costs [16]. The disease further accounts for 31.9% of the hospital 30-day readmission rate, the highest rate even when compared with heart disease and kidney disease [17]. The medical costs for the over 70,000 people affected by SCD in the United States are estimated to exceed $1.1 billion annually [14].…”

Section: Introductionmentioning

confidence: 99%

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Nwanonyiri¹,

Monetti²,

Boyd-Jackson³

2019

OJN

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Background: Sickle cell disease (SCD) is a chronic and potentially life-threatening genetic blood disorder with childhood onset. Caring for children with SCD can precipitate greater than average time demands, medical costs, employment constraints, and childcare challenges. Research has shown that family resilience is a key construct capable of enhancing family health and well-being, as well as neutralizing the burden of caring for an ill child. Aim: Applying the Family Resilience Model, this qualitative study involved exploring the phenomenon of family resilience through the perceptions and lived experiences of family caregivers of children with SCD. Methods: 10 self-identified primary SCD caregivers were recruited with the help of the Sickle Cell Association of New Jersey (SCANJ). Three researches and five open-ended interview questions elicited participants' descriptions of their lived experiences. Results: Using an Interpretive Phenomenological Approach and Donabedian's conceptual model to analyze data, three categories emerged from verbatim transcriptions of interviews: family experiences and caring for a child with SCD (Structure); family strengths (Process); and resilience & adaptation (Outcome). The emergent theme was Key Family Strengths Fosters Family Resilience and Adaptation. Conclusions: Findings from this study offered insight into the diverse experiences of caring for children with SCD in the framework of family resilience. Results can facilitate the enhancement of family resilience and adaptation for future families and in designing care specifically tailored for these family caregivers. Recognizing resilience processes utilized by family caregivers of children with SCD is important for future research and to render support by healthcare practitioners.

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Section: Introductionmentioning

confidence: 99%

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Nwanonyiri¹,

Monetti²,

Boyd-Jackson³

2019

OJN

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“…Sendo assim, o tratamento da DF tem como objetivo prevenir as crises vaso-oclusivas e proporcionar uma melhor qualidade de vida às pessoas. No que diz respeito às influencias na vida cotidiana de adolescentes com DF, foram encontrados cinco artigos (16)(17)(18)(19)(20) .…”

Section: Discussionunclassified

“…Por terem sua rotina e cotidiano prejudicados pela doença, outro auxílio aos adolescentes encontrado na revisão foi a Espiritualidade e Religiosidade (E/R). Em geral, a percepção de qualidade de vida foi melhorada entre indivíduos que usaram espiritualidade e religiosidade, aqueles com maiores níveis de espiritualidade também apresentaram maiores pontuações de QV (20) .…”

Section: Discussionunclassified

Qualidade De Vida De Adolescentes Com Doença Falciforme: Revisão Integrativa Da Produção Científica Em Enfermagem

Madella¹,

Pacheco²,

Hoffmann³

et al. 2018

Rev. Enf. UFJF

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RESUMOObjetivo:Identificar, na literatura nacional e internacional, publicações que tratem sobre os assuntos de qualidade de vida relacionada à saúde de adolescentes com doença falciforme. Método:Trata-se de uma revisão integrativa da literatura nacional e internacional. A amostra contou com 442 artigos; desses, 67 abordavam a temática e apenas 14 atenderam aos critérios de inclusão. Resultados: Foi possível identificar que a qualidade de vida e a saúde do adolescente falcêmico é prejudicada devido à recorrência de crises vaso-oclusiva geradoras de fadiga e dores agudas, estas conduzem os adolescentes para frequentes transfusões de sangue e hospitalizações. Considerações Finais: Conclui-se que estes adolescentes possuem problemas de enfermagem passiveis de intervenções, em uma linha de cuidado que identifique as queixas individuais, desempenhando uma assistência qualificada, dialógica, sensível e que favoreça a interlocução multiprofissional para a melhora da qualidade de vida e saúde destes adolescentes. Palavras-chave: Anemia falciforme. Adolescente. Enfermagem. Qualidade de Vida. ABSTRACTObjective: To identify, in the national and international literature, publications that shows about the quality of life related to the health of adolescents with sickle cell disease. Methods: Integrative review of national e international literature. A sample consisted on 442 articles, of which only 67 addressed the thematic and 14 the inclusion criteria. Results: It was possible to identify that the quality of life of adolescents with sickle cell disease is impaired due to the recurrence of vessel-occlusives crises that generates fatigue and acute pain, these lead the teenagers to frequent blood transfusions and hospitalizations. Final Considerations: It was conclude that the adolescents have nursing problems which may suffer interventions in a careful line, that identifies individuals complaints, performing a care with quality, dialogical, sensitive and promotes the multidisciplinary dialogue to improve the quality of life and health of these adolescents.

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“…Religious beliefs can empower people by association with a community and a "supreme being" that may in turn offer psychological stability (Oman and Thoresen 2003). For populations with SCD, prayer, high church attendance and reliance on spirituality to cope with the physiological and psychological effects of the illness have been found to be common (Bediako et al 2011;Clayton-Jones and Haglund 2016;Cotton et al 2009).…”

Section: Introductionmentioning

confidence: 99%

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

Dennis-Antwi

Ohene‐Frempong²,

Anie

et al. 2018

Journal of Genetic Counseling

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Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.

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The Role of Spirituality and Religiosity in Persons Living With Sickle Cell Disease

Cited by 30 publications

References 26 publications

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Qualidade De Vida De Adolescentes Com Doença Falciforme: Revisão Integrativa Da Produção Científica Em Enfermagem

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

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