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      Psychosocial burden of sickle cell disease on the family, Nigeria

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          Abstract

          Background

          Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people, poses a significant psychosocial burden on the sufferers, the caregivers and their families.

          Objective and methods

          From 01 January 2011 to 30 September 2011 the caregivers of children with SCD treated at the Paediatric Haematology Clinic of the University Teaching Hospital in Ado-Ekiti, Nigeria, were included in a study, using a structured questionnaire and a validated, culture-relevant disease burden interview to assess the psychosocial burden of SCD on these caregivers. Three main objective psychosocial domains and some subjective domains, including the caregivers’ coping ability were assessed.

          Results

          A total of 225 caregivers, consisting of 202 mothers (89.8%), 15 grandmothers (6.7%) and 8 fathers (3.6%) were studied. In 53.3% of the families, the care of children with SCD adversely affected the provision of their basic needs, with 73.3% of the caregivers stating that time spent caring for the child made them lose income or financial benefits; 19.6% of the caregivers had to take out loans to meet the expenditure of the patient's illness. Caring for children with SCD reportedly made 42.2% of the caregivers neglect other family members. In addition, 14.2% of the families experienced moderate to severe disruption in their day-to-day interactions within the family to the extent that 12.4% frequently quarrelled due to the child's illness.

          Conclusion

          Caregivers are faced with enormous financial, interpersonal and psychological problems. Social support should be available to alleviate caregivers’ and/or family members’ burdens.

          Abstrait

          Le poids psychosocial de la drépanocytose sur la famille, Nigeria

          Contexte

          La drépanocytose, le trouble génétique le plus commun dans la population noire, constitue un poids psychosocial significatif pour les malades, les aides soignant et leurs familles.

          Objectif et méthodes

          Du 1er Janvier au 30 Septembre 2011, les aides soignant d'enfants atteints de drépanocytose traités dans la clinique d'hématologie pédiatrique de l'hôpital universitaire d'Ado-Ekiti, au Nigeria, ont participé à une étude, réalisée à l'aide d'un questionnaire structuré et d'un entretien sur le poids de la maladie validé et pertinent en termes de culture afin d’évaluer le poids psychosocial de la drépanocytose sur ces aides soignant. Les trois principaux domaines psychosociaux objectifs et subjectifs, et la capacité des aides soignant à faire face ont été évalués.

          Résultats

          Un total de 255 aides soignant, consistant en 202 mères (89.8%), 15 grands-mères (6.7%) et 8 pères (3.6%) ont participé à l’étude. Dans 53.3% des familles, la prise en charge des enfants atteints de drépanocytose affectait défavorablement la satisfaction de leurs besoins de base, 73.3% des aidants ayant déclaré que le temps consacré à s'occuper de l'enfant leur faisait perdre des revenus ou des avantages financiers; 19.6% des aides soignant ont dû contracter des emprunts pour pouvoir faire face aux dépenses liées à la maladie du patient. La prise en charge des enfants atteints de drépanocytose aurait poussé 42.2% des aides soignant à négliger les autres membres de la famille. De plus, 14.2% des familles ont connu une perturbation grave de leurs relations quotidiennes au sein de la famille, au point que 12.4% se disputaient fréquemment en raison de la maladie de l'enfant.

          Conclusion

          Les aides soignant font face à d’énormes problèmes financiers, interpersonnels et psychologiques. Un soutien social devrait être proposé afin d'alléger le poids supporté par les aides soignant et/ou les membres de la famille.

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          Most cited references15

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          Socio-economic and cultural background of hospitalised children in Ilesha

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            Sex work and the 2010 FIFA World Cup: time for public health imperatives to prevail

            Background Sex work is receiving increased attention in southern Africa. In the context of South Africa's intense preparation for hosting the 2010 FIFA World Cup, anxiety over HIV transmission in the context of sex work has sparked debate on the most appropriate legal response to this industry. Discussion Drawing on existing literature, the authors highlight the increased vulnerability of sex workers in the context of the HIV pandemic in southern Africa. They argue that laws that criminalise sex work not only compound sex workers' individual risk for HIV, but also compromise broader public health goals. International sporting events are thought to increase demand for paid sex and, particularly in countries with hyper-endemic HIV such as South Africa, likely to foster increased HIV transmission through unprotected sex. Summary The 2010 FIFA World Cup presents a strategic opportunity for South Africa to respond to the challenges that the sex industry poses in a strategic and rights-based manner. Public health goals and growing evidence on HIV prevention suggest that sex work is best approached in a context where it is decriminalised and where sex workers are empowered. In short, the authors argue for a moratorium on the enforcement of laws that persecute and victimise sex workers during the World Cup period.
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              Quality of life of female caregivers of children with sickle cell disease: a survey.

              Caring for a child with sickle cell disease poses extra demands on parents, both practically and psychologically, which may influence their quality of life. Since families of children with sickle cell disease in the Netherlands usually belong to immigrant communities with a low socio-economic status, there may be an additional strain on caregivers. The aim of the present study was to evaluate the quality of life of caregivers of children with sickle cell disease. The quality of life of female caregivers of sickle cell disease patients, measured with the TNO-AZL Adult Quality of Life questionnaire, was compared to the norm data of healthy Dutch females (n=700) and female caregivers of healthy children with the same socio-economic status and ethnic background (socio-economic status control group). Groups were compared by the Mann-Whitney U test. Point estimates and 95% confidence intervals of the median difference are presented. The results of questionnaires of 54 caregivers of children with sickle cell disease and 28 caregivers of a control group of the same socio-economic status were analyzed. Caregivers of patients with sickle cell disease had a significantly lower quality of life on all subscales compared to the Dutch norm population. Compared to the control group of the same socio-economic status, the quality of life of caregivers of patients with sickle cell disease was significantly lower on the subscales depressive moods, daily activities and vitality. In this first study reporting on the quality of life of caregivers of children with sickle cell disease, we demonstrate a reduced quality of life in these caregivers compared to the healthy Dutch female population and caregivers of healthy children with the same socio-economic status.
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                Author and article information

                Journal
                Afr J Prim Health Care Fam Med
                Afr J Prim Health Care Fam Med
                PHCFM
                African Journal of Primary Health Care & Family Medicine
                AOSIS OpenJournals
                2071-2928
                2071-2936
                24 April 2012
                2012
                : 4
                : 1
                : 380
                Affiliations
                [1 ]Department of Paediatrics and Child Health, Obafemi Awolowo University, Ile-Ife, Nigeria
                [2 ]Department of Community Health, Obafemi Awolowo University, Ile-Ife, Nigeria
                Author notes
                Correspondence to: Samuel Adegoke, Email: adegoke2samade@ 123456yahoo.com , Postal address: Department of Paediatrics and Child Health, Obafemi Awolowo University Ile-Ife, Nigeria

                How to cite this article: Adegoke SA, Kuteyi EA. Psychosocial burden of sickle cell disease on the family, Nigeria. Afr J Prm Health Care Fam Med. 2012;4(1), Art. #380, 6 pages. http://dx.doi.org/10.4102/phcfm.v4i1.380

                Article
                PHCFM-4-380
                10.4102/phcfm.v4i1.380
                4565137
                f55f12e9-a279-4865-b94a-1ad52a44b184
                © 2012. The Authors

                AOSIS OpenJournals. This work is licensed under the Creative Commons Attribution License.

                History
                : 15 October 2011
                : 20 January 2012
                Categories
                Original Research

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