Relationship between burden of care and quality of life among caregivers of children with autistic spectrum disorders (asd) in nakuru level five hospital, nakuru county

Abstract

Background to the study: autistic spectrum disorders (asds) remain an important public health problem due to associated behavioral and developmental challenges faced by affected children. Most people with asds and other developmental disorders live in low and middle income countries (lmics); where they cannot access or afford treatment. Unfortunately, most of the knowledge about these conditions is based on research done in high-income countries. These burdens can become chronic or recurrent and lead to substantial impairments in an individual’s ability to take care of his or her everyday responsibilities; and can lead to suicide at its worst. Objectives of the study: the main objective of the study was to establish the relationship between burden of care and quality of life among caregivers of children with asd in the african setting as seen in nakuru level five hospital, kenya. Study design and site: the study used a descriptive cross-sectional design incorporating quantitative research methods. This study was conducted in nakuru level five hospital. Nakuru level five hospital is currently the fourth largest government referral hospital in kenya. Study participants: the study population included all caregivers of children diagnosed with asd, attending child psychiatry clinic at the nakuru level five hospital, nakuru county. Findings: on the general state of their social life, the study established that it was poor [2.34± 0.563] while their family relationships was fair [2.74±0.608] [x2=104.9, p<0.05] while leisure activities were poor [2.32±0.556] [x2=41.3, p<0.05] and their ability to function in their daily lives was fair [2.59±0.58] [x2=82.05, p<0.05]. On their sexual drive, interest in it or performance, the study found that it was fair [2.98±0.56] [x2=37.53 p<0.05] and their economic status was poor [2.38±0.66] [x2=59.63, p<0.05] as well as living/housing condition was not good [2.67±0.56] [x2=100.97, p<0.05]. Their ability to get around physically was good [3.64, .524] as well as their vision in terms of ability to do their hobbies/work [3.57±.543] though their overall sense of wellbeing was fair [2.73±.549] [x2=139.1, p<0.05]. The respondents agreed that their current financial position was adequate to look after the child living with asd to some extent [1.91±.874] and they were worried to some extent on child’s future financial situation [2.4±.494. Assessing their concern that they were largely responsible to meet the asd child financial need, the study established that the respondents were to some extent [2.4±.48] and the same response was obtained on the query that if their family's financial situation had worsened since the diagnosis of the child with asd [2.49±.50] . The study established that respondents had support from their family help in caring for the child to some extent [2.1±.303, x2=56.6, p<0.05] and they further asserted that the child living with asd cause disturbances in the home to some extent [2.4±.5] and they were able to care for others in their family to some extent [2.33±.47]. Conclusion: the findings of this study suggest that caring for children with autism spectrum disorders can overwhelm their family members, similarly to families of children with other developmental disorders. Overall, the research concluded that the family burden of care was very high leading to poor quality of life. Recommendation: there is need for a longitudinal study in order to obtain more data to assess the caregiving burden and collaboration among stakeholders to come up with policy to support asd children in order to lessen the burden of caregiving.