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1.
Qual Health Res ; 32(8-9): 1328-1341, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35621329

RESUMO

Adults living with sickle cell disease are at risk for experiencing severe illness from coronavirus disease 2019 (COVID-19) due to the complexity of their disease. Additionally, self-management and navigating the healthcare system may be challenging during the COVID-19 pandemic. Therefore, we conducted telephone interviews with 25 participants to explore the experiences of Black adults living with sickle cell disease during the early months of the pandemic in the United States. Three overarching themes characterize their experiences: management of sickle cell disease was further complicated by the pandemic, fear of the virus contributed to physical and social isolation, and employment and financial challenges affected well-being. The pandemic contributed to changes in health care maintenance and had a disproportionate impact on this population. Addressing social and structural determinants of health and disruptions in health care accessibility is critical to advancing health and health care equity for individuals living with sickle cell disease.


Assuntos
Anemia Falciforme , COVID-19 , Adulto , Medo , Humanos , Pandemias , Isolamento Social , Estados Unidos/epidemiologia
2.
Ethn Health ; 24(3): 323-340, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28553758

RESUMO

BACKGROUND: Much of the research on African-Americans' HPV vaccine acceptance has largely focused on racial/ethnic differences related to cognitive, socio-economical, and structural factors that contribute to differences in HPV vaccine acceptance and completion. A growing body of literature suggest that cultural factors, such as mistrust of healthcare providers (HCPs) and the healthcare system, religion, and social norms related to appropriate sexual behaviors, also plays a prominent role in their HPV vaccine acceptance. However, these studies were limited in their use of theoretical approaches necessary to conceptualize and operationalize culture. OBJECTIVE: To explore the influence of culture on African-American mothers' and daughters' HPV vaccine acceptance using the PEN-3, a culturally-centered conceptual framework. METHODS: Grounded theory techniques were used to explore cultural factors that influenced the acceptance of the HPV vaccine among African-American mothers (n = 28) and their daughters (n = 34). RESULTS: Positive attitudes towards vaccination stemmed from beliefs that the HPV vaccine has cancer prevention benefits and that vaccinations in general protected against infectious diseases. Negative attitudes stemmed from beliefs that the HPV vaccine was too new, not effective, daughters were too young, and that vaccines were not a one-size-fits-all intervention. Majority of mothers and daughters indicated that their religious doctrine did not impede their HPV vaccination decisions. For a few mothers, religious beliefs could not be separated from their HPV vaccination decisions and ultimately deterred HPV vaccine acceptance. HCP recommendations were valued however mothers were often dissatisfied with the detail of information communicated. Support networks provided both positive and negative types of social support to mothers and daughters. The media highlighted the cancer prevention benefits of the HPV vaccine and unintentionally communicated negative information of the HPV vaccine, which deterred HPV vaccine acceptance. CONCLUSION: Study findings can inform the development of culturally appropriate interventions that advances the evidence on cervical cancer prevention.


Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Cultura , Mães/estatística & dados numéricos , Núcleo Familiar/etnologia , Vacinas contra Papillomavirus/administração & dosagem , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Feminino , Teoria Fundamentada , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Núcleo Familiar/psicologia , Infecções por Papillomavirus/prevenção & controle , Inquéritos e Questionários , Neoplasias do Colo do Útero/prevenção & controle , Vacinação , Adulto Jovem
3.
Public Health Nurs ; 36(2): 134-143, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30548324

RESUMO

OBJECTIVE: To increase our understanding about the health beliefs of African-American parents and their daughters toward HPV infection and HPV vaccine acceptance. METHODS: The Health Belief Model was used as a guiding framework. Principles of grounded theory, theoretical sampling, and constant comparison analysis were used to qualitatively analyze data generated from personal interviews of African-American parents (n = 30) and their 12- to 17-year-old daughters (n = 34). RESULTS: Mothers and daughters perceived low susceptibility to HPV infection and perceived the HPV vaccine as beneficial in protecting against genital warts and cervical cancer. Compared to daughters, parents placed particular emphasis on the vaccine's protection against genital warts. A major HPV vaccine acceptance barrier among parents and daughters was the politicization of the HPV vaccine by government figures. In addition, concerns about unknown side effects, safety, and effectiveness of HPV vaccination emerged. Cues to action varied among parents and daughters, and self-efficacy was higher among parents than daughters. CONCLUSION: Understanding the health beliefs that promote HPV vaccine acceptance, while identifying and addressing beliefs that are barriers among parents and daughters, will assist in the development of appropriate HPV vaccine promotion initiatives for African-American parents and daughters.


Assuntos
Negro ou Afro-Americano/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/administração & dosagem , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Vacinação/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Mães , Núcleo Familiar , Pais , Autoeficácia , Neoplasias do Colo do Útero/prevenção & controle
4.
Geriatr Nurs ; 39(3): 279-284, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29129447

RESUMO

The objective of this study was to assess the feasibility of using amplified hearing devices (AHD) in acute care settings for patients with hearing loss. Secondary objectives include patient and nurse satisfaction, and nursing perceived productivity. Twenty-five adult hard of hearing patients and 15 nurses were evaluated. Patients with a perceived hearing handicap were identified through the Hearing Handicap for the Elderly Screening Version. Patient and staff nurse surveys were used to assess for satisfaction with using the AHD. Nurses were surveyed to evaluate whether they felt the AHD made patient communication more efficient and effective. Twenty-four patients expressed satisfaction with the AHD and would use it in future hospitalizations. Nurses also reported satisfaction, perceived improvement of patient communication and decreased time spent communicating with patients. Results demonstrate the feasibility of using an AHD in acute care inpatient settings where elderly hard of hearing patients are common.


Assuntos
Comunicação , Auxiliares de Audição/estatística & dados numéricos , Satisfação do Paciente , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Perda Auditiva/prevenção & controle , Humanos , Masculino , Inquéritos e Questionários
5.
Pain Manag Nurs ; 17(3): 226-34, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-27283268

RESUMO

Sickle cell disease (SCD) is a genetic disease associated with both chronic pain and acute painful events referred to as vaso-occlusive crises. Individuals with SCD suffer from a multitude of medical complications in addition to pain. Patients often are stigmatized as "drug-seeking" and receive inadequate pain management. The purpose of this study was to compare clinicians' SCD knowledge and attitudes toward patients with SCD before attending a 2-day conference on SCD (T1) with knowledge and attitudes immediately postconference (T2) and 2 months postconference (T3). A prospective, descriptive survey design was used. The authors administered surveys to assess SCD knowledge and clinicians' attitudes toward patients with SCD at three time points: T1 (N = 59), T2 (N = 38), and T3 (N = 30). SCD knowledge was measured using a 20-item survey, and clinicians' attitudes toward patients with SCD were measured with the General Perceptions About Sickle Cell Patients Scale, which included items on four independent subscales: positive attitudes, negative attitudes, concern-raising behaviors, and red-flag behaviors. The authors compared changes in knowledge and attitude scores between T1-T2 and T1-T3. Overall, knowledge scores were significantly improved (p < .001) and significantly increased between T1-T2 (p < .0001) and T1-T3 (p = .01). Negative attitudes trended lower over the three time points (p = .07), but a significant decrease in the negative attitudes score was only noted for T1-T3 (Z = -2.16.17, p = .03). Attendance at an educational SCD conference was an effective means to improve knowledge and decrease negative attitudes among clinicians. These differences were maintained at 2 months postconference.


Assuntos
Anemia Falciforme/patologia , Anemia Falciforme/psicologia , Anemia Falciforme/terapia , Atitude do Pessoal de Saúde , Competência Clínica/normas , Adulto , Competência Clínica/estatística & dados numéricos , Congressos como Assunto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Estudos Prospectivos , Inquéritos e Questionários
6.
Pain Manag Nurs ; 16(3): 173-81, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26025791

RESUMO

Individuals with sickle cell disease (SCD) have reported being stigmatized when they seek care for pain. Nurse attitudes contribute to stigmatization and may affect patients' response to sickle cell cues, care-seeking, and ultimately patient outcomes. The purpose of this cross-sectional, descriptive, comparative design study was to determine whether there are significant differences in nurse attitudes toward patients with SCD by worksite-medical-surgical units compared with emergency departments/intensive care units (ED/ICU). The sample consisted of 77 nurses (36 nurses from the ED/ICU and 41 from medical-surgical units) who completed an anonymous online survey. No significant differences were noted in attitudes by worksite, with nurses from both sites demonstrating high levels of negative attitudes toward patients with SCD. Findings suggest that nurses from both worksites need additional education about SCD and care of this vulnerable, patient population.


Assuntos
Anemia Falciforme/enfermagem , Atitude do Pessoal de Saúde , Enfermeiras e Enfermeiros/psicologia , Adulto , Análise de Variância , Estudos Transversais , Escolaridade , Feminino , Humanos , Masculino , Relações Enfermeiro-Paciente , Fatores Sexuais , Estereotipagem , Local de Trabalho
7.
J Psychosoc Oncol ; 33(3): 310-31, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25751114

RESUMO

Adaptation is an ongoing, cognitive process with continuous appraisal of the cancer experience by the survivor. This exploratory study tested a path model examining the personal (demographic, disease, and psychosocial) characteristics associated with quality of life (QOL) and whether or not adaptation to living with cancer may mediate these effects. This study employed path analysis to estimate adaptation to cancer. A cross-sectional sample of NHL survivors (N = 750) was used to test the model. Eligible participants were ≥ 18 years, at least 2 years post-diagnosis, and living with or without active disease. Sixty-eight percent of the variance was accounted for in QOL. The strongest effect (-0.596) was direct by negative adaptation, approximately 3 times that of positive adaptation (0.193). The strongest demographic total effects on QOL were age and social support; <65 years of age had better QOL and better adaptation compared to those ≥ 65. Of the disease characteristics, comorbidity score had the strongest direct effect on QOL; each additional comorbidity was associated with a 0.309 standard deviation decline on QOL. There were no fully mediated effects through positive adaptation alone. Our exploratory findings support the coexistence of positive and negative adaptations perception as mediators of personal characteristics of the cancer experience. Negative adaptation can affect QOL in a positive way. Cancer survivorship is simultaneously shaped by both positive and negative adaptation with future research and implications for practice aimed at improving QOL.


Assuntos
Adaptação Psicológica , Linfoma não Hodgkin/psicologia , Modelos Psicológicos , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Linfoma não Hodgkin/terapia , Masculino , Pessoa de Meia-Idade , Sobreviventes/estatística & dados numéricos
8.
Medsurg Nurs ; 24(1): 35-8, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26306354

RESUMO

Sickle cell disease (SCD) is a painful condition wherein breathing often is compromised. This pilot study supports the premise that individuals with SCD are willing to learn breathing exercises. Medical-surgical nurses should encourage breathing exercises for managing pain and preventing complications.


Assuntos
Anemia Falciforme/enfermagem , Anemia Falciforme/reabilitação , Exercícios Respiratórios/enfermagem , Educação de Pacientes como Assunto , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , North Carolina , Papel do Profissional de Enfermagem , Manejo da Dor/enfermagem , Projetos Piloto , Adulto Jovem
9.
Pain Manag Nurs ; 15(1): 324-30, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23343879

RESUMO

In individuals with sickle cell disease (SCD), recognizing the cues to an acute pain episode and responding appropriately are important. The purpose of this mixed-methods pilot study is to identify preliminary factors that influence care seeking for pain in young adults with SCD. Responses were received from 69 young adults with SCD, age 18-35 years. The majority of respondents (88%) wait until the pain intensity is an average of 8.7 (± 1.2) on a scale of 1 to 10 before seeking care. Prominent themes influencing care seeking for pain include: trying to treat pain at home, avoiding the emergency department because of past treatment experiences, the desire to avoid admission to the hospital, and the importance of time in the lives of the young adults with SCD. Young adults with SCD need additional support from family and healthcare providers in order to make timely, appropriate decisions regarding care seeking.


Assuntos
Anemia Falciforme/psicologia , Manejo da Dor/psicologia , Dor/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adolescente , Adulto , Anemia Falciforme/complicações , Atitude Frente a Saúde , Feminino , Hospitalização , Humanos , Masculino , Dor/etiologia , Manejo da Dor/métodos , Projetos Piloto , Pesquisa Qualitativa , Autocuidado/métodos , Autocuidado/psicologia , Tempo para o Tratamento , Adulto Jovem
10.
Pain Manag ; 12(7): 859-878, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36098065

RESUMO

Aim: Characterize use and efficacy/effectiveness of virtual, augmented, or mixed reality (VR/AR/MR) technology as non-pharmacological therapy for chronic pain. Methods: Systematic search of 12 databases to identify empirical studies, of individuals who experience chronic pain or illness involving chronic pain, published between 1990 and 2021. JBI Critical Appraisal Checklists assessed study bias and a narrative synthesis was provided. Results: 46 studies, investigating a total of 1456 participants and including 19 randomized controlled trials (RCT), were reviewed. VR/AR/MR was associated with improved pain-related outcomes in 78% of the RCTs. Conclusion: While most studies showed effects immediately or up to one month post treatment, RCTs are needed to further evaluate VR/AR/MR, establish long-term benefits, and assess accessibility, especially among individuals who experience pain management disparities.


Virtual, augmented and mixed reality (VR/AR/MR) are technologies that can be used to manage chronic pain. The use and effectiveness of VR/AR/MR were examined during a review of 46 research studies, which included 1456 participants and 19 randomized controlled trials (RCTs). In 78% of the RCTs, VR/AR/MR improved pain or pain-related outcomes. While most studies showed a benefit on pain immediately or up to 1 month after treatment, more research is needed to assess the long-term benefits of VR/AR/MR on pain and understand how these technologies provide pain relief in the body. Additionally, the accessibility and cost­effectiveness of VR/AR/MR must be evaluated. These areas for future research must consider individuals who experience disparities in the treatment of chronic pain.


Assuntos
Realidade Aumentada , Dor Crônica , Realidade Virtual , Dor Crônica/terapia , Humanos , Manejo da Dor , Tecnologia
11.
J Transcult Nurs ; 33(3): 334-345, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35094624

RESUMO

INTRODUCTION: About 100,000 individuals in the United States live with sickle cell disease (SCD). Palliative care (PC) can improve symptom management for these individuals. The purpose of the study was to explore (a) the experiences of people living with SCD, and (b) their knowledge and perceptions of PC. METHOD: Using a qualitative, descriptive design, adults with SCD were recruited from a foundation in the southeastern United States. Data included social and SCD-related demographics and audio-recorded, semi-structured focus groups. Analysis took a thematic analysis approach. RESULTS: Participants: There were 16 African Americans who participated in the study, 75% of whom were females, and aged 22 to 71 years. Five themes were identified: unique and unpredictable impact of SCD on daily life, the changing experience of SCD over time, stigmatization/marginalization in health care interactions, perceptions of support in managing SCD symptoms/crises, and PC: "What is it?" DISCUSSION: Participants lacked PC knowledge. PC should be offered to individuals with SCD as part of comprehensive SCD management.


Assuntos
Anemia Falciforme , Negro ou Afro-Americano , Adulto , Anemia Falciforme/complicações , Anemia Falciforme/terapia , Feminino , Humanos , Masculino , Cuidados Paliativos , Estereotipagem , Estados Unidos
12.
ABNF J ; 22(3): 58-63, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21901994

RESUMO

Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. We explored the life stories of middle-age and older adults with SCD to ascertain how they explain their longevity and how they see the place of SCD in their lives. Data were gathered using semi-structured interviews with 12 individuals living with SCD--seven women and five men. Respondents offered four main reasons for their longevity: self-care, supportive family/friends, a higher power, and medical care. Respondents reported life satisfactions of family, employment/education, and religious activities. The life stories reflect challenges of often living with a disease prior to diagnosis and without modern advances and the unpredictable nature of the disease. Their stories provide healthcare providers with insight into the supports SCD patients need to improve their health outcomes as they move through the life course.


Assuntos
Adaptação Psicológica , Anemia Falciforme/psicologia , Negro ou Afro-Americano , Acontecimentos que Mudam a Vida , Qualidade de Vida , Idoso , Anemia Falciforme/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Narração , Satisfação Pessoal , Autocuidado , Apoio Social , Sudeste dos Estados Unidos
13.
J Natl Med Assoc ; 102(11): 1050-5, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-21141294

RESUMO

Health-related stigma is increasingly becoming a major public health issue that is receiving more attention. Young adults with sickle cell disease (SCD) are at risk for health-related stigmatization due to the many challenges of the disease. SCD includes the lifelong challenges of managing the chronic illness while accessing and navigating the health care system. The burdens of the disease can affect all aspects of the lives of individuals with SCD to include physiological, psychological, and social well-being. Although others may be involved in the process of stigmatization, the purpose of this paper was to support the need to develop patient-oriented interventions to prevent and treat health-related stigma in young adults with SCD, as these individuals may face health-related stigma throughout their lives, but especially immediately after transitioning from pediatric to adult care. Additionally, the Revised Theory of Self-Care Management for Sickle Cell Disease is offered as a framework from which theory-based interventions can be derived.


Assuntos
Anemia Falciforme/psicologia , Estereotipagem , Adolescente , Criança , Feminino , Humanos , Masculino , Fatores de Risco , Autocuidado , Adulto Jovem
14.
J Fam Nurs ; 16(4): 422-34, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-21051757

RESUMO

Little is known about the influence of maternal behaviors during childhood on the self-efficacy of individuals with sickle cell disease (SCD).This study retrospectively investigated the relationship between maternal overprotection and caring during childhood and self-efficacy in adulthood. Using a cross-sectional survey design, 32 adults with SCD completed questionnaires about demographics, maternal parenting behaviors, and self-efficacy. On average, adults with SCD reported moderate levels of SCD self-efficacy, high levels of overprotection, and high levels of caring. Self-efficacy was significantly related to educational level ( r = .39, p = .04), number of SCD crises per year (r = -.41, p = .04), and caring (r = .48, p = .01). Using simultaneous regression modeling, maternal caring was significantly predictive of self-efficacy (ß = .44, p = .03). Results suggest that maternal caring during childhood may promote the development of self-efficacy in adults with SCD.


Assuntos
Anemia Falciforme/psicologia , Comportamento Materno , Poder Familiar , Autoeficácia , Adolescente , Adulto , Criança , Escolaridade , Feminino , Humanos , Pessoa de Meia-Idade , Relações Mãe-Filho , Estudos Retrospectivos , Adulto Jovem
15.
Semin Oncol Nurs ; 32(2): 134-43, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-27137470

RESUMO

OBJECTIVES: To describe the changing dynamics of patient-provider communication with proposals for optimizing this important relationship. DATA SOURCES: Current research, national programs and guidelines from the National Cancer Institute, the Commission on Cancer, the Institute of Medicine, and the Oncology Nursing Society. CONCLUSION: There are important opportunities to apply evidence-based strategies to optimize patient-provider communication that will result in improved health outcomes. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses across all areas of practice, including clinical care, research, and education, can play a significant role in achieving the goal of positive health outcomes by addressing challenges that inhibit effective patient-provider communication.


Assuntos
Enfermagem Baseada em Evidências , Enfermagem Oncológica , Participação do Paciente , Comunicação , Humanos , Oncologia , Estados Unidos
16.
Soc Sci Med ; 159: 116-26, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-27180256

RESUMO

BACKGROUND: African-Americans and Latinos suffer the highest cervical cancer burden compared to other populations and have sub-optimal HPV vaccination rates. OBJECTIVE: To condense research findings of studies conducted with African-Americans and Latinos on factors associated with HPV vaccine acceptability and uptake. METHODS: Standards for conducting an integrative review were used. PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases were searched. RESULTS: Awareness about HPV and the HPV vaccine varied by demographics of parents. For Latino parents, acculturation and awareness were associated. However, findings were mixed regarding the association between acculturation and knowledge. Among African-Americans, higher socioeconomic status (SES) and awareness were associated. Sexuality-related concerns, concerns about safety and low perceived risk of daughter's acquiring HPV emerged as barriers to vaccination among Latinos and African-Americans. Among Latinos, vaccine acceptability was associated with the vaccine's cancer prevention benefits and a provider's recommendation. Among African-Americans, acceptability was associated with awareness, perceived risk of acquiring HPV, religion, and a provider's recommendation. Few interventions have been developed to increase HPV vaccine acceptance. Importantly, few studies assessed the influence of culture on vaccine acceptance and uptake. CONCLUSIONS: Future research should be informed by culture-centered theories as this is the first step to inform the development of culturally-grounded interventions.


Assuntos
Negro ou Afro-Americano/psicologia , Hispânico ou Latino/psicologia , Vacinas contra Papillomavirus/uso terapêutico , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/farmacologia , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Estados Unidos/etnologia , Neoplasias do Colo do Útero/prevenção & controle
17.
West J Nurs Res ; 36(5): 599-619, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24309381

RESUMO

Young adults with sickle cell disease (SCD) are often stigmatized when they seek care for pain. The purpose of this pilot study was to test an intervention to decrease health-related stigma during care-seeking. Young adults with SCD ages 18 to 35 years (n = 90) were randomized to either the care-seeking intervention (CSI) or an attention control group that participated in life review interviews. The two groups were compared by t tests and longitudinal data analyses on the change from baseline to the last time point in total health-related stigma and health-related stigma by doctors. Findings suggest that the CSI was associated with significant increased awareness of perceived total stigma and stigma by doctors compared with the attention control group. These findings are promising in terms of lessons learned from a pilot intervention that focused on the role communication skills play in decreasing health-related stigma in young adults with SCD.


Assuntos
Anemia Falciforme/psicologia , Estereotipagem , Adolescente , Humanos , Manejo da Dor/psicologia , Projetos Piloto , Adulto Jovem
18.
Nurs Res Pract ; 2011: 270594, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21994819

RESUMO

Self-care management is an important part of living with a chronic illness. Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. Some middle-aged and older adults with SCD lived with the disease prior to having a diagnosis and without modern advances. The purpose of this study is to share the self-care recommendations of middle-aged and older adults with SCD. Using descriptive qualitative methods, data were gathered through semistructured interviews from 11 individuals living with SCD, including 6 women and 5 men. Self-care recommendations themes included physiological, psychological, and provider-related. The self-care recommendations may be seen as an additional resource or "words of wisdom" for younger adults with SCD who can use the recommendations to better manage their own disease. Additionally, providers may be able to use these recommendations to inform their practice.

19.
Res Nurs Health ; 31(4): 355-69, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18247376

RESUMO

Factors predicting health outcomes in persons with sickle cell disease (SCD) were investigated within the framework of the theory of self-care management for SCD, which proposes that vulnerability factors negatively affect health care outcomes and self-care management resources and positively mediate the relationship between vulnerability factors and health care outcomes. A cross-sectional descriptive design was used to test the model with a sample of 232 African American adults with SCD. Results supported the negative effect of vulnerability factors on health outcomes. The overall model was supported, however, self-care management resources did not mediate the relationship between vulnerability and health care outcomes. The findings provide support for interventions to increase self-care management resources to improve health care outcomes.


Assuntos
Anemia Falciforme/etnologia , Atitude Frente a Saúde/etnologia , Negro ou Afro-Americano/etnologia , Nível de Saúde , Teoria Psicológica , Autocuidado/psicologia , Adaptação Psicológica , Adulto , Negro ou Afro-Americano/educação , Análise de Variância , Anemia Falciforme/genética , Anemia Falciforme/prevenção & controle , Assertividade , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida/psicologia , Fatores de Risco , Autocuidado/métodos , Autoeficácia , Apoio Social , Fatores Socioeconômicos , Sudeste dos Estados Unidos , Populações Vulneráveis/psicologia
20.
J Theory Constr Test ; 12(1): 16-24, 2008 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-19838320

RESUMO

Little is known about the lives of adults with sickle cell disease (SCD). This article reports findings from a qualitative pilot study, which used life review as a method to explore influences on health outcomes among middle-aged and older adults with SCD, Six females with SCD, recruited from two urban sickle cell clinics in the U.S., engaged in semi-structured, in-depth life review interviews. MaxQDA2 software was used for qualitative data coding and analysis. Three major themes were identified: vulnerability factors, self-care management resources, and health outcomes. These themes are consistent with the Theory of Self-Care Management for Sickle Cell Disease. Identifying vulnerability factors, self-care management resources, and health outcomes in adults with SCD may aid in developing theory-based interventions to meet health care needs of younger individuals with SCD. The life review process is a useful means to gain insight into successful aging with SCD and other chronic illnesses.

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