Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents

Wesley, Kimberly M.; Zhao, Mimi; Carroll, Yvonne; Porter, Jerlym S.

doi:10.1016/j.pedn.2015.09.011

Cited by 27 publications

(21 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Individuals may not want to know their SCT status, given the high levels of stigma associated with sickle cell (Burns, Antle, Williams, & Cook, 2006;Jenerette & Brewer, 2010;Marsh, Kamuya, & Molyneux, 2011). Such stigma may contribute to a host of detrimental physiological, psychological, and socio-behavioral outcomes that negatively affect individuals and their families (Jenerette & Brewer, 2010;Wesley, Zhao, Carroll, & Porter, 2016). Thus, avoiding this knowledge may be an effective strategy on the part of the individual to reduce the risk of the exclusion, rejection, blame, devaluation, and discrediting that often accompany stigmatized health-related conditions (Link & Phelan, 2006;Weiss, Ramakrishna, & Somma, 2006).…”

Section: Discussionmentioning

confidence: 99%

Knowledge and Awareness of Sickle Cell Trait Among Young African American Adults

2016

View full text Add to dashboard Cite

Sickle cell trait (SCT) places individuals at risk of passing an abnormal hemoglobin gene to biological children and is associated with rare but serious complications. The present study sought to examine knowledge of SCT and awareness of personal trait status among 258 young African American adults. Participants were surveyed regarding demographics, medical history, and sources of sickle cell information before completing a trait knowledge questionnaire. Overall, participants possessed significant misinformation about the condition. Women and those who had learned about sickle cell from families displayed higher levels of knowledge. Most participants were uncertain of personal trait status, and many did not wish to be informed of it. Health care providers should be alert that individuals with SCT may be unaware of their condition and potential reproductive and health implications. Screening and reporting procedures should be examined to ensure individuals have access to and control of this vital health information.

show abstract

Section: Discussionmentioning

confidence: 99%

Knowledge and Awareness of Sickle Cell Trait Among Young African American Adults

2016

View full text Add to dashboard Cite

show abstract

“…In addition, families may experience employment instability, financial constraints, regular monitoring and assessments of their children and instituting strategies and preventative measures aimed at reducing triggers and enabling their children to deal with the disease [7] [8] [9] [10]. Furthermore, family caregivers may be burdened with the frequent use of emergency room services, hospitalizations as a result of painful sickle cell crises, stigmatization, stereotyping, blame, misconceptions, and overall poor quality of life and well-being [8] [10] [11] [12] [13].…”

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

View full text Add to dashboard Cite

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.

show abstract

“…Issues related to genetic inheritance emerged as one of the families' concerns about the future. It is worth mentioning that children with SCD can suffer the stigma of the disease within their own family, as well as in social spaces such as schools, because for those who are unaware of the disease, they can imagine the disease as contagious making the child feel different in the environment in which he lives and lives (23) .…”

Section: Discussionmentioning

confidence: 99%

Family management ofchildren who experience sickle cell disease: a qualitative study

et al. 2020

View full text Add to dashboard Cite

Objective: to know the family management experience of children with sickle cell disease in the light of the Family Management Style Framework. Methods: a qualitative case study carried out between September/2015 and July/2016 with 12 members of eight families registered in a blood center in Minas Gerais. The semi-structured interviews were recorded, and the data were analyzed and interpreted by the hybrid model thematic analysis. Results: three management styles were identified: five families in the accommodating style; two families in the struggling style; and only one family in the enduring style.It was noted that empowerment was paramount in the acquisition of skills and abilities to care for these children. Final considerations: family management knowledge of children with sickle cell disease provided a reflection on nurses’ role in supporting, orienting and encouraging the empowerment of these families aiming at the search for comprehensive care.

show abstract

Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents

Cited by 27 publications

References 27 publications

Knowledge and Awareness of Sickle Cell Trait Among Young African American Adults

Knowledge and Awareness of Sickle Cell Trait Among Young African American Adults

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

Family management ofchildren who experience sickle cell disease: a qualitative study

Contact Info

Product

Resources

About