Quality of life of female caregivers of children with sickle cell disease: a survey

Tweel, Xandra W. van den; Hatzmann, Janneke; Ensink, E.F.A.; Lee, Johanna H. van der; Peters, Marjolein; Fijnvandraat, Karin; Grootenhuis, Martha A.

doi:10.3324/haematol.11610

Cited by 62 publications

(61 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…These findings suggest that respondents whose children have TB have impaired QOL compared with those whose children do not have TB. This is consistent with the findings of several studies that measured the QOL of adult caregivers whose children suffered from chronic diseases such as osteogenesis imperfecta [27], sickle cell disease [31], cancer [32] [33], disabilities, Down's syndrome [34], speech and language disorders [35], COPD [28], and schizophrenia [36]. All these studies revealed that the caregivers of the diseased children had impaired QOL compared with control populations.…”

Section: Discussionsupporting

confidence: 90%

Relationship between Caregiver’s Quality of Life and Childhood Tuberculosis in Bauchi State, Northeastern Nigeria

Adamu¹,

Osoba²,

White³

et al. 2018

OALib

View full text Add to dashboard Cite

Background: In Nigeria, childhood tuberculosis (TB), a debilitating and deadly disease, is highly prevalent and case reporting is poor due to weak health systems. Globally, children account for at least 10 percent of the TB burden, yet they remain neglected in TB prevention and control efforts. Research studies integrating family and community-centered strategies have been recommended by stakeholders to address the paucity of current local prevention and management strategies for childhood TB. Study Design: Observational study. Methods: This quantitative cross-sectional study explored the relationship between caregivers' quality of life (QOL) and the reporting of TB in their children aged 0 -14 years. Using the abbreviated version of World Health Organization's (WHO) QOL tool, the WHOQOL-BREF, data were collected individually in a face-to-face setting from caregivers (n = 47) whose children had been diagnosed with TB in Bauchi State, Northeastern Nigeria, over a 5-year period. Data were collected in the same manner from another set of caregivers of children without TB (n = 47) within the same period and setting. Results: Logistic regression indicated a statistically significant relationship (p < 0.001) between the caregivers' QOL and the reporting of childhood TB. Conclusion: This finding underscores the need to identify the factors that positively impact the QOL of caregivers of childhood TB cases. It also reflects the importance of integrating QOL interventions as part of TB control programs seeking to improve childhood TB reporting. This can mitigate the disease burden in vulnerable age-groups living in resource limited settings, thereby contributing to positive social change in the society.

show abstract

Section: Discussionsupporting

confidence: 90%

Relationship between Caregiver’s Quality of Life and Childhood Tuberculosis in Bauchi State, Northeastern Nigeria

Adamu¹,

Osoba²,

White³

et al. 2018

OALib

View full text Add to dashboard Cite

show abstract

“…As to the sociodemographic variables and morbidities that affect timely and significant statistics, different domains of caregiver burden were: poor or very poor support from the partner, having health problems, greater numbers of children, unemployment, low education level, black skin color, and not receiving help to care for the child / adolescent patient. Numerous studies conducted with caregivers of patients with various chronic diseases (6,7,9,12,16) in different countries, and with a variety of instruments that measure the burden, demonstrated similar findings, that is, caregivers often experience similar situations that cause burden.…”

Section: Resultsmentioning

confidence: 57%

“…Research has shown that caregivers generally experience psychopathological disorders more frequently with the physical problems that require more doctor visits, therefore, they use more medications and have poorer health than the general population. (15,16) In another study, it was reported that 41% of caregivers of children with cancer became ill at some point in the child's treatment. (14) The illness or presence of chronic disease at the mean age of these caregivers is not common; research conducted with 218 caregivers of healthy Brazilian children found no presence of any chronic health problem, and 25% of the caregivers of children with cancer reported some type of chronic morbidity.…”

Section: Resultsmentioning

confidence: 99%

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

et al. 2012

View full text Add to dashboard Cite

Objective: To evaluate the burden of care and quality of life (QOL) of caregivers of children/adolescents with cancer during chemotherapy treatment, and to relate them to each other and sociodemographic data. Methods: A transversal study, with 160 caregivers. We collected sociodemographic data, burden of care using the Caregiver Burden Scale and QOL using the SF-36. Results: 88.7% of caregivers were mothers, with the mean age of 34.9 years, overall burden score 2.09 ± 0.04 and the SF-36 scores most compromised were: emotional aspects, vitality, mental health and physical aspects. The regression model accounted for 36.0% of the burden. Conclusion: The QOL of caregivers and burden of care experienced showed compromise in various domains, and these alterations may affect the quality of care provided to children and adolescents, and lead to imbalances in their own health. Keywords: Caregivers; Quality of life; Neoplasms/drug therapy; Child care; Adolescent RESUMOObjetivo: Avaliar a sobrecarga de cuidado e a qualidade de vida (QV) de cuidadores de crianças/adolescentes com câncer durante tratamento quimioterápico e relacioná-las entre si e aos dados sociodemográficos. Métodos: Estudo transversal, com 160 cuidadores. Foram coletados dados sociodemográficos, sobrecarga de cuidado, conforme "Caregiver Burden Scale" e de QV pelo SF-36. Resultados: 88,7% dos cuidadores eram mães, idade média 34,9 anos, escore geral de sobrecarga 2,09±0,04 e escores do SF-36 mais comprometidos: aspectos emocionais, vitalidade, saúde mental e aspectos físicos. O modelo de regressão respondeu 36,0% da sobrecarga. Conclusão: A QV dos cuidadores e sobrecarga de cuidados vivenciada mostram-se comprometidas em diversos domínios, e essas alterações podem afetar a qualidade da assistência prestada às crianças e adolescentes e propiciar desajustes na própria saúde. Descritores: Cuidadores; Qualidade de vida; Neoplasias/quimioterapia; Cuidado da criança; Adolescente RESUMEN Objetivo: Evaluar la sobrecarga del cuidado y la calidad de vida (CV) de cuidadores de niños/adolescentes con cáncer durante el tratamiento quimioterápico y relacionarlas entre sí y a los datos sociodemográficos. Métodos: Estudio transversal, realizado con 160 cuidadores. Fueron recolectados datos sociodemográficos, sobrecarga de cuidado, conforme "Caregiver Burden Scale" y de CV por el SF-36. Resultados: 88,7% de los cuidadores eran madres, edad promedio 34,9 años, scores general de sobrecarga 2,09±0,04 y scores del SF-36 más comprometidos: aspectos emocionales, vitalidad, salud mental y aspectos físicos. El modelo de regresión respondió a 36,0% de la sobrecarga. Conclusión: La CV de los cuidadores y sobrecarga de cuidados vivenciada se muestran comprometidas en diversos dominios, y esas alteraciones pueden afectar a la calidad de la asistencia prestada a los niños y adolescentes, propiciando desajustes en la propia salud. Descriptores: Cuidadores; Calidad de vida; Neoplasias/quimioterapia; Cuidado del niño; Adolescente

show abstract

“…Social support is significantly associated with appointment-keeping behavior and adherence to health activities [21] and we believe that offering routine social support and easy link to social services motivated families to attend routine visits, knowing that they could rely on our services also for other daily-life issues. Poor performance in school is common in SCD children and immigrant parents suffer the inability to help them [22]. The acceptance of neurocognitive evaluation and the request of help in dealing with school teachers by all caregivers demonstrate the importance of this issue in our group.…”

Section: Discussionmentioning

confidence: 80%

Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Colombatti

Montanaro

Guasti

et al. 2012

Pediatric Blood & Cancer

View full text Add to dashboard Cite

INTRODUCTIONSickle Cell Disease (SCD) is the most common genetic disease worldwide. In the past decades advances in basic research and clinical investigations have produced a marked decrease in morbidity and mortality during early childhood. Newborn screening, prophylactic penicillin, effective vaccinations, and stroke prevention have largely contributed to these results [1][2]. Even though comprehensive medical care has been shown to decrease health care resource utilization and to improve quality of life [3] for patients with SCD, in the United States only 36% of children with SCD perform at least one hematology visit per year for comprehensive care [4] and the rate of missed appointments is around 45% [5]. Moreover, although medical advances have resulted in availability of improved treatments for children with SCD, less than 50% are enrolled in Transcranial Doppler (TCD) screening programs for stroke prevention both in Europe [6][7] and the United States [8][9].In many countries SCD affects people belonging to minority communities, such as African Americans in the United States or African immigrants in Europe [10]. Immigrants present cultural, social, and financial barriers in accessing the health system and these factors have an effect on the management of chronic illnesses [11][12][13].New models of comprehensive care need to be developed in order to ensure that all patients with SCD receive high quality care and benefit from the advances in clinical research, overcoming patient-related and health system-related barriers to specialized health care [14].Italy does not have a hemoglobinopathy newborn screening program and for many years pediatric hematology services have focused primarily on thalassemia. SCD has emerged as an important health condition in the last decade due to immigration, mainly from Africa and Albania, and the number of affected children is steadily increasing [15]. The majority of patients are diagnosed with SCD in the Emergency Room during acute events or because referred to a specialized center by the pediatric general practitioner, by friends or relatives. SCD is considered a rare disease and, according to the legislation of European countries, if a patient is registered as having a rare disease by a specialized reference center, patients and families can apply for disability benefits, care is free, and drugs are provided almost for free, with only a minimum contribution (prescription token). Children usually refer to their pediatric general practitioner for routine primary care, to local hospitals for emergencies and to tertiary care reference centers for specialized care.The Clinic of Pediatric Hematology-Oncology of the Azienda Ospedaliera-Università di Padova began assisting patients with SCD in 2003.From 2003 to 2005, several patient-related and health-operator related barriers to care had been noted. Patient-related barriers in seeking and accepting care regarded mainly language difficulties, socioeconomic factors (no permit of stay, precarious living conditions, low income, dif...

show abstract

Quality of life of female caregivers of children with sickle cell disease: a survey

Cited by 62 publications

References 35 publications

Relationship between Caregiver’s Quality of Life and Childhood Tuberculosis in Bauchi State, Northeastern Nigeria

Relationship between Caregiver’s Quality of Life and Childhood Tuberculosis in Bauchi State, Northeastern Nigeria

Sobrecarga e qualidade de vida de cuidadores de criança e adolescentes com câncer em tratamento quimioterápico

Comprehensive care for sickle cell disease immigrant patients: A reproducible model achieving high adherence to minimum standards of care

Contact Info

Product

Resources

About