Costs, burden and quality of life associated with informal caregiving for children with Lymphoma attending a tertiary hospital in Ghana

2020 ◽  
Vol 23 (4) ◽  
pp. 165-172
Author(s):  
Cromwell Prince Dawson ◽  
Genevieve Cecilia Aryeetey ◽  
Samuel Agyei Agyemang ◽  
Kofi Mensah ◽  
Rebecca Addo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Social Protection ◽  
Primary Caregivers ◽  
Direct Costs ◽  
Cross Sectional ◽  
High Burden ◽  
The Impact

Introduction Primary family caregivers provide substantial support in the management of lymphoma, potentially affecting their quality of life and increasing household health care costs. Our aim was thus to determine the economic costs and quality of life of primary caregivers of children with lymphoma. Methods This cross-sectional study involved primary informal caregivers of children with lymphoma attending the pediatric cancer unit at Komfo Anokye Teaching Hospital. The study adopted a cost-of-illness approach to estimate the direct costs (medical and non- medical) incurred and indirect cost (productive losses) to caregivers over the one-month period preceding the data collection. Zarit Burden Interview was used to determine caregiver burden and EUROHIS-QoL tool was used to determine the quality of life of primary caregivers. Results The average cost of managing lymphoma in children was estimated to be US$440.32, 97% of which were direct costs. On average, caregiver burden was 26.3 on the scale of 0 to 48. About 94% of caregivers reported high burden, with more males reporting high burden. Overall, average quality of life among caregivers was 2.20 on the 1 to 5 range. Approximately 85% of respondents reported low quality of life, with females reporting lower quality of life than males. Discussion This study shows that lymphoma is associated with substantial cost and increased burden, and affects quality of life of family caregivers. Future studies can explore the impact of social protection interventions (in the form of health insurance) to reduce the household economic burden of managing lymphoma in children.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

scholarly journals RELATIONSHIP BETWEEN FAMILY INTERACTION, FAMILY BURDEN AND QUALITY OF LIFE AMONG CAREGIVERS OF PATIENTS WITH EPILEPSY

2016 ◽  
Vol 4 (4) ◽  
pp. 108-114
Author(s):  
M. Senthil
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Demographic Data ◽  
Family Interaction ◽  
Interaction Pattern ◽  
Family Burden ◽  
Cross Sectional ◽  
Quality Of Life Scale ◽  
The Impact

Living with epilepsy imposes great challenges on both patients and their family caregivers but most researchers only explored the impact on patients, with less attention given to family caregivers. Our study intended to explore the needs and problems of epilepsy family caregivers of epilepsy patients encountered during the caregiving process. The present study was an attempt to assess the relationship between Family interaction pattern, family burden schedule and Quality of life of the caregivers of individuals with epilepsy. This study was conducted at the Ranchi Institute of Neuro-Psychiatry and Allied Sciences, Ranchi. It was a cross sectional study and purposive sampling was used. The present study was conducted among 60 caregivers of epilepsy, those who were willing to participate and those who have satisfied with inclusion and exclusion criteria have been included in the study. The socio demographic data sheet had been used for collecting socio demographic details of the caregivers of individuals with epilepsy. Family interaction pattern scale, family burden interview schedule and WHO Quality of life scale were applied on the caregivers of individuals with epilepsy. Statistical analysis was performed by using the SPSS programme 16.0 version. The result found that family interaction pattern has effect on family burden and quality of life. Likewise family burden has greater impact on quality of life. The study highlights the need for family interventional programs to address the specific issues related to family interaction, burden and quality of life of caregivers.

scholarly journals The Impact of COVID-19 on Informal Caregivers in the US

2021 ◽  
pp. 87
Author(s):  
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Social Connectedness ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Early Research ◽  
The Us ◽  
The Impact

Background: Caregiver burden has negative effects on mental and physical health along with quality of life. Meanwhile, social and physical distancing protocols during the COVID-19 pandemic have created additional impacts on informal caregiving in a rapidly changing environment. Early research over the past year suggests that the pandemic has caused increased caregiver burden as well as caregiving intensity among these individuals. Purpose: Our primary purpose in this informational literature review is to describe the impacts of the pandemic on informal caregiver burden and the sudden shift in roles and responsibilities as a result of pandemic-related changes in caregiving. This review will describe emerging effects on various aspects of health among informal caregivers and explore the growing need to support unpaid caregiving during this time. Methods: A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and up-to-date mainstream resources were utilized. Notably, we focused on research published or released since March 2020, primarily rapidly reviewed studies, to align with the timing of the COVID-19 pandemic in the US. Results: Early research suggests that the pandemic has worsened caregiver burden and increased caregiving intensity and hours of care among unpaid, informal family caregivers. Reported health impacts include higher stress, pain, and depression, along with decreased social connectedness and quality of life. Notably, however, COVID-related research generally does not focus on the positive aspects of caregiving, such as its role as a source of purpose in life, creating an opportunity to explore ways to boost certain valuable personal resources among caregivers. Conclusions: Informal family caregivers face their own negative health outcomes and distress as a result of greater caregiver burden, intensity, and the changing landscape of caregiving during the ongoing COVID-19 pandemic. Immediate policy and support recommendations should be considered to alleviate informal caregiver burden and provide ongoing resources over the longer term. In addition, future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.

scholarly journals Overburden of the caregiver of cancer patients in palliative care

2020 ◽  
Vol 14 ◽  
Author(s):  
Rafael Augusto Paes Lima Rocha ◽  
Elisângela De Moraes Rocha ◽  
Marli Elisabete Machado ◽  
Andressa De Souza ◽  
Felipe Barreto Schuch
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patients ◽  
Caregiver Burden ◽  
Cross Sectional ◽  
Zarit Burden Interview ◽  
Calidad De Vida ◽  
Independent Association ◽  
The Impact

Objetivo: correlacionar o impacto da sobrecarga do cuidador na qualidade de vida do paciente oncológico em cuidados paliativos Método: trata-se de um estudo quantitativo, descritivo, observacional, transversal, com 50 pacientes oncológicos em cuidados paliativos e 50 cuidadores. Aplicou-se um questionário sociodemográfico para os cuidadores e familiares, a Escala Zarit Burden Interview, o Questionário EORT QLQ –C15-PAL, a Escala de Resiliência Adaptada de Wagnild & Young e a Escala de Pensamento Catastrófico da Dor, uso do Teste t, Correlação de Spearman, Correlação de Pearson e regressão linear. Utilizou-se o Programa SPSS, versão 20.0 para a análise dos dados. Resultados: informa-se que os domínios da qualidade de vida que mostraram associação independente com a sobrecarga do cuidador foram a fatiga, a falta de apetite, a constipação e o impacto global. Manteve-se associação independente pelo catastrofismo da dor do paciente com a sobrecarga do cuidador, não houve associação entre a resiliência do paciente e a sobrecarga do cuidador e 40% dos cuidadores apresentaram sobrecarga severa. Conclusão: nota-se que o aumento da sobrecarga do cuidador diminui a qualidade de vida do paciente oncológico em cuidados paliativos. Descritores: Sobrecarga de Cuidadores; Qualidade de Vida; Cuidados Paliativos; Oncologia; Dor do Câncer, Resiliência.AbstractObjective: to correlate the impact of caregiver burden on the quality of life of cancer patients in palliative care. Method: this is a quantitative, descriptive, observational, cross-sectional study with 50 cancer patients in palliative care and 50 caregivers. A sociodemographic questionnaire was applied for caregivers and family members, the Zarit Burden Interview Scale, the EORT QLQ –C15-PAL Questionnaire, the Wagnild & Young Adapted Resilience Scale and the Catastrophic Pain Thinking Scale, using the t Test, Spearman's correlation, Pearson's correlation and linear regression. The SPSS program, version 20.0, was used for data analysis. Results: it is reported that the domains of quality of life that showed an independent association with caregiver burden were fatigue, lack of appetite, constipation and the global impact. An independent association was maintained due to the catastrophism of the patient's pain with the burden of the caregiver, there was no association between the patient's resilience and the burden of the caregiver and 40% of the caregivers presented severe burden. Conclusion: it is noted that the increase in caregiver burden reduces the quality of life of cancer patients in palliative care. Descriptors: Caregivers Burden; Quality of Life; Palliative Care; Oncology; Cancer Pain; Resiliencia.ResumenObjetivo: correlacionar el impacto de la carga del cuidador en la calidad de vida de los pacientes oncológicos en cuidados paliativos Método: este es un estudio cuantitativo, descriptivo, observacional, transversal con 50 pacientes oncológicos en cuidados paliativos y 50 cuidadores. Se aplicó un cuestionario sociodemográfico para cuidadores y miembros de la familia, la Escala Zarit Burden Interview, el Cuestionario EORT QLQ-C15-PAL, la Escala de Resiliencia Adaptada Wagnild& Young y la Escala de Pensamiento de Dolor Catastrófico, usando la Prueba t, Correlación de Spearman, la Correlación de Pearson y regresión lineal. El programa SPSS, versión 20.0, se utilizó para el análisis de datos. Resultados: se informa que los dominios de calidad de vida que mostraron una asociación independiente con la carga del cuidador fueron fatiga, falta de apetito, estreñimiento y el impacto global. Se mantuvo una asociación independiente debido al catastrofismo del dolor del paciente con la sobrecarga del cuidador, no hubo asociación entre la resistencia del paciente y la sobrecarga del cuidador y el 40% de los cuidadores presentaron una sobrecarga severa. Conclusión: se observa que el aumento de la sobrecarga del cuidador reduce la calidad de vida de los pacientes oncológicos en cuidados paliativos. Descriptores: Carga del Cuidador; Calidad de Vida; Cuidados Paliativos; Oncología; Dolor de Cáncer, Resiliencia.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Quality of life and perceived health status in surviving adults with univentricular heart

Heart ◽  
2001 ◽  
Vol 86 (1) ◽  
pp. 69-73
Author(s):  
Z Saliba ◽  
G Butera ◽  
D Bonnet ◽  
P Bonhoeffer ◽  
E Villain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Normal Population ◽  
Psychosocial Problems ◽  
Perceived Health ◽  
Univentricular Heart ◽  
Cross Sectional ◽  
Clinical Variables ◽  
Health Measures ◽  
The Impact

OBJECTIVETo evaluate the quality of life in patients with univentricular heart and to determine the impact of sociodemographic and clinical characteristics.DESIGN AND SETTINGRetrospective, cross sectional study conducted in a regional paediatric cardiology centre.PATIENTSThe health records of 89 survivors with univentricular heart (median age 21 years; range 17–49 years) were reviewed. Sixty seven answered the Duke questionnaire. Sociodemographic and clinical variables were similar in the responders and non-responders. The impact of sociodemographic and clinical variables on individual Duke's measures was assessed.RESULTSThe Duke scores of adults with univentricular heart were similar to the normal population. Cyanosis predicted a worse score for physical (p = 0.05) and perceived health measures (p = 0.02). A higher educational level predicted a better score for physical (p = 0.004), mental (p = 0.01), and general health measures (p = 0.02). Orthopaedic problems worsened the social score (p = 0.05). Psychosocial problems worsened the pain score (p = 0.04). In comparison with the other anatomical types, mitral atresia worsened the perceived health score (p = 0.02). Patients younger than 23 years scored better for almost all health and dysfunction measures.CONCLUSIONSDespite repeated interventions and other disease related everyday stresses, a selected group of adults with univentricular heart had a satisfying quality of life.

scholarly journals Prevalence and quality of life in high school pupils with acne in Serbia

2013 ◽  
Vol 70 (10) ◽  
pp. 935-939 ◽  
Author(s):  
Jelena Peric ◽  
Natasa Maksimovic ◽  
Janko Jankovic ◽  
Biljana Mijovic ◽  
Vesna Reljic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High School ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Demographic Questionnaire ◽  
Study Population ◽  
Serbian Version ◽  
The Impact ◽  
Spearman’S Correlation

Background/Aim. Acne is a common problem in adolescent children with considerable emotional and psychological effects. The aim of this study was to determine the self-reported prevalence of acne and to assess its impact on the quality of life in high school pupils in Serbia. Methods. The cross-sectional study was conducted in May 2011 in two medical high schools in Serbia. Only pupils who gave a written informed consent to participate in the study (n = 440) were asked to fill in two questionnaires: short demographic questionnaire and Cardiff Acne Disability Index (CADI), a disease-specific questionnaire measuring disability induced by acne. Internal consistency (tested by Cronbach?s alpha) and item-total score correlations (Spearman's correlation analysis) were used for reliability analyses. Results. The study population consisted of 440 pupils, 281 from Belgrade and 159 from Uzice. Among them 371 (84.3%) were girls and 69 (15.7%) boys, with similar sex distribution in Belgrade and Uzice. The total mean age of pupils was 16.48 years (SD = 0.55). Out of 440 pupils 228 (51.8%) self-reported their acne. The acne prevalence was significantly higher in pupils from Uzice (73.6%) than in those from Belgrade (39.6%). The overall mean CADI score for the whole sample was 2.87 ? 2.74, with the similar quality of life impairment in adolescents from Belgrade and from Uzice. The mean Cronbach?s alpha was 0.82. Conclusion. This study shows that the quality of life impairment due to acne is mild for the majority of the affected pupils. The Serbian version of the CADI is a reliable, valid, and valuable tool for assessing the impact of acne on the quality of life.

Quality of Life in People Living With HIV: An Exploratory Cross-Sectional Survey in Belgium

2021 ◽  
Vol 33 (3) ◽  
pp. 249-264
Author(s):  
Gert Scheerder ◽  
Sandra Van den Eynde ◽  
Patrick Reyntiens ◽  
Ria Koeck ◽  
Jessika Deblonde ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Sexual Life ◽  
People Living With Hiv ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Related Stigma ◽  
Living With Hiv ◽  
The Impact

This cross-sectional survey explored the quality of life in 505 people living with HIV in Belgium. Several domains of quality of life were impaired: 26% had been diagnosed with depression and 43% had weak social support. HIV-related stigma is still widespread, with 49% believing most people with HIV are rejected and 65% having experienced discrimination due to HIV. The impact of HIV was limited on professional life, but 40% experienced a negative impact on life satisfaction and 41% a negative impact on sexual life. For several domains, people with a recent diagnosis of HIV and long-term survivors had significantly worse scores. This survey also uncovered strengths of people living with HIV, such as positive coping and HIV self-image. Expanding the scope of quality of life in people living with HIV may provide a more complete picture of relevant life domains that may be impacted by living with HIV, but this needs further validation.

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