Quality of life among caregivers of sickle cell disease patients: a cross sectional study

Abstract

PurposeTo assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.MethodA cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult’s Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate = 61.6%). The questionnaire scores were transformed into 0–100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants’ lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions’ scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.ResultsSixty-three caregivers were included; 79.4% were mothers, age range 21–71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile] = 44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B = 3.14, p = 0.016), friends (B = 2.51, p = 0.015) and relatives (B = 2.69, p = 0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B = 2.56, p = 0.001), job achievement (B = 4.54, p = 0.001), living conditions (B = 2.60, p = 0.034) and the condition of the diseased child (B = 2.55, p = 0.011). A strong correlation was found between sleep quality and cognitive skills.ConclusionThere are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-1009-5) contains supplementary material, which is available to authorized users.

Spontaneous Subgaleal Hematoma in a Sickle Cell Disease Patient: A Case Report

“…The oxygen-carrying hemoglobin molecules of red blood cells are affected in this hemoglobinopathy, predisposing the blood cells to a sickle-shape that may occlude small arteries and cause tissue hypoxia and micro/macro infarcts [ 1 , 2 ]. Five to seven percent of the worldwide population is estimated to have hemoglobinopathies with Africa having the highest prevalence of SCD [ 3 , 4 ]. The prevalence of SCD in Saudi Arabia is higher than that in other countries, especially in the Eastern and Southern regions of the country with 145 and 24 cases per 10,000 people, respectively; however, the disease is decreasing [ 3 ].…”

Family management ofchildren who experience sickle cell disease: a qualitative study

“…This care routine overloads the family system, especially the mother of children, who ends up taking over this care more intensely in relation to other family members. This can also reflect on a low quality of life for this caregiver, as shown by studies (3,15,19) .…”

“…In this context, three families in the study were able to count on the support of employers, facilitating a better financial condition, however the five families that did not have this support reported difficulties in accessing tests and medications not available in the Health Care Network, which although they are provided by the Brazilian Unified Health System (SUS -Sistema Único de Saúde), there are periods of delay in distribution. As children cannot wait due to the risk of complications, families need to defray expenses, with low family income making it difficult to conduct the therapeutic itinerary (15) .…”

Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study

“…This highlights the value of depressive symptom screening within the paediatric SCD population. It is also important to assess the quality of life of the parents who take care of the children, as SCD also impacts close family members of patients [ 41 , 47 ].…”