Health-Related Quality of Life of Caregivers of Children with Attention Deficit Hyperactivity Disorder: A Case of Muhimbili National Hospital

Abstract

Background: Raising a child with attention deficit hyperactivity disorder (ADHD) is known to decrease the well-being and health status of caregivers, however, not much is known about the extent of these effects in low-income countries including Tanzania. Understanding and preserving caregivers’ quality of life is broadly considered to be a final goal that professional mental health services should provide to families. Aim of the study: This study aims to determine factors associated with health-related quality of life (HRQoL) of caregivers of children with attention deficit hyperactivity disorder attending outpatient services at the Muhimbili National Hospital, Tanzania Materials and Methods: This descriptive cross-sectional hospital-based study utilized a consecutive sampling procedure to recruit 64 caregivers of children aged 3 to 16 years attending the child and adolescent psychiatry clinic over a period of 2 months (32 clinic days) at the Muhimbili National Hospital, and who were diagnosed with ADHD using the Kiddie-SADs-Present and Lifetime Version (K-SADS). The data collected between September 2020 to November 2020 assessed caregiver’s health related quality of life (HRQoL); using the quality-of-life survey short-form SF 12. Risk factors data included social-demographic measures, and psychosocial risk factors of interest including perceived social support, level of affiliated stigma, parental stress and depressive symptoms. Data were analyzed using the Statistical Package for the Social Science (SPSS) version 23 software. Bivariate analyses determined biological, psychological and social risk factors of interest associated with caregiver HRQoL; and select variables to include in linear regression analysis (associations with (p<0.2). Stepwise linear regression analyses determined factors independently associated with HRQoL at p-value of <0.05. Results: All the participants (N=64) were aged between 20-60 years (mean age 34.9 years ±9.6 standard deviation), most being aged 35 years or younger. Their mean (SD) scores of the HRQoL physical functioning and mental functioning dimensions were 48.0±3.8 and 43.6±10.8 respectively. Risk factors independently associated with the physical functioning domain were high compared to low affiliated stigma (β=0.357, p=0.009, Partial r2=-0.343,95% CI) and secondary/college/university compared to lower levels (β=-0.473, p=0.004, Partial r2=0.380,95% CI). Furthermore, factors independently associated with mental functioning domain were secondary/college/university versus lower levels (β=-0.520, p=0.003, Partial r2=-0.394,95% CI), having more than three versus lower numbers of children in the caregiver’s household (β=0.316, p=0.007, Partial r2=0.362,95% CI), high/clinically relevant versus lower parenting stress in the past six months (β=-0.274, p=0.026, Partial r2=-0.302,95% CI), and high versus low depression symptom severity (β=- 0.435, p=0.000, Partial r2=-0.509,95%CI). Conclusion and recommendations: High levels of affiliated stigma, parental stress and depressive symptoms were significant intervenable factors associated with low HRQoL. Caregivers with less than three children in the home should be particularly targeted for interventions. Further studies using larger samples of caregivers are required to confirm these observations. Pilot studies to determine the feasibility and acceptability of ADHD treatment modalities that include psychosocial programs targeting the intervenable risk factors identified by this study should also be determined, including a better understanding of caregiver experiences in providing care for their children with ADHD in order to better determining their needs for the development of targeted caregiver interventions.