Problems encountered by immediate families in caring for children affected with sickle cell disease.University Teaching Hospital,Lusaka, Zambia

Abstract

Sickle Cell Disease (SCD) is a chronic incurable genetic blood disorder that affects the Haemoglobin (Hb) within the Red Blood Cell (RBC).The disease affects millions of people throughout the world and is one of the most prevalent and costly genetic disorder. It is also found in people of African heritage, Mediterranean, Caribbean, South and Central America, Arabian and Indian ancestry. Patients with SCD experience and endure frequent and prolonged bouts of pain and suffer from several complications associated with the disease. This requires multiple hospitalizations and causes a misery of burden. The family experiences several problems in caring and managing these children. The aim of the study was to assess the problems encountered by immediate families in caring for children affected with SCD. The study was a descriptive cross sectional study conducted at University Teaching Hospital (UTH) paediatrics department. The study sample consisted of 145 parents and guardians of children affected with SCD seen at UTH SCD outpatient clinic. The study population was sampled using non probability sampling method known as convenient sampling. A structured interview schedule consisting of both closed and open ended questions was used to collect both qualitative and quantities data. SPSS version 16 was used to analyze data. Chi square test was used to measure association between variables. The cut off point for statistical significance was 0.05. The study revealed that majority of respondents (63%) had low levels of knowledge of SCD. There was a strong association between level of education and knowledge of the disease ( p value 0.01).The level of knowledge also influenced the frequency of hospital hospitalizations The study revealed that the majority of respondents experienced financial burdens in caring for children affected with SCD and this was a major source of anxieties to the families. There was an association between monthly income and families borrowing money to take care of family needs (p value 0.01). The studies revealed that, majority of the mothers (69%) of the affected children were unable to work because of the responsibilities of caring for the affected child.

This study revealed that respondents and their family members experienced psychological problems which included depression, anxiety, feelings of guilt and episode of blue moods. There was a significant association between the number of times the child had been hospitalized and depression in the parent (p value 0.01). The study revealed social problems experienced by the families of affected children ranging from poor interpersonal relationships within the home environment, stigmatization, inadequate social support and poor relationship between spouses. There was an association between joint spousal counselling on SCD and relationship between spouses being affected (p value 0.02). The investigator recommends that the Ministry of Health should put in place National SCD programmes and introduce effective and efficient IEC programmes to make the communities in our country aware of SCD. There is need to establish SCD clinics in all District hospitals and major rural health centres for effective management of SCD patients. There is need for the formation of a Zambia SCD Association which will bring into focus the public health importance of providing strategies for support to the patients and their immediate families. There is also need for mandatory genetic counselling in order to prevent increased incidence of SCD. It is envisaged that the study results will be used by service delivery area, Ministry of health and interested parties to help put up measures to alleviate problems experienced by immediate family members so as to help improve the quality of life for affected children and their families