The prevalence of psychological distress in our present studies was high with 41% reporting a level of psychological distress above the expected norm on the SRQ. This data clearly demonstrates that there are many undiagnosed and unmanaged psychological issues among parents of children with intellectual disabilities. Previous studies have reported prevalence of psychological distress ranging from 32 to 89% among parents of children with disabilities [10, 27]. The prevalence rate found in our study is high and reflects the magnitude of undiagnosed psychological distress not previously identified. This is compounded by the lack of psychological support provided by health facilities for these families in Malawi particularly with few trained health care providers in mental health in this setting. This finding highlights the need to better address the psychological issues among parents of children with intellectual disabilities by health care providers. The high prevalence observed in this study is consistent with previous studies. Rates found in our study are lower than those from Kenya where a rate of 79% prevalence is reported [10, 28]. This may be due differences in data collection instruments. Our study used SRQ which depends on participants’ self-report and may lead to under reporting bias.

On social demographic factors for the study participants, many of them were around thirties. This is mainly due to reproductive and caring age which is among the middle aged as found in similar studies [29, 30]. Many more women than men took part in this study. In Malawi, women are still the main carers for children and single motherhood is more common in mothers of children with disabilities as a result of marital breakdown caused by the birth of the disabled child in the family [31]. In some cases, husbands disassociate from the child with disability and the mother is blamed for bearing the disabled child [32]. The burden of care of all children with disabilities in Malawi tends to rest with females [32], even if other carers from the extended family such as grandmothers, aunts and uncles and older siblings might help. It is clearly important to introduce programs that particularly benefit women in enabling them to more confidently care for their child. It is also important to design and facilitate group-based psychological interventions which address issues affecting mainly women.

In this present study, the majority of participants sampled were unemployed and about 44% had a low socio-economic status. The relationship between development of a child’s disability and poverty is clear and likely to be the case in our group of participants [33]. This relationship can be explained by a number of factors related to unemployment and poverty. Firstly, the nutritional status of mothers during pregnancy can affect brain development but also make mothers more susceptible to infections and insults during pregnancy which all can affect the baby’s brain development. Secondly, many poor mothers are less likely to access health services due to unaffordable transportation and medication costs. This can compromise the health of the mothers and lead to delays in accessing perinatal services resulting in poor birth outcomes such as low birth weight and child asphyxia, both major predictors of child intellectual disability. A study on children with disabilities in Uganda found that families with a disabled child are more likely to live in poverty with up to 88% of caregivers finding it difficult to meet the basic needs of their children with disabilities and their families [34].

In our study, those families living in Mzuzu; belonging to upper socio-economic class, those with better parent education, and those having psychological support were associated with less psychological distress. Sex of the parent was not useful. Much of these factors may be related to the economic circumstances of the study population. Mzuzu population is more educated despite being a bit rural and hence people would have better livelihoods because they would be in better employment compared to Lilongwe. Studies have demonstrated that individuals with good socio-economic status and better parent education are more likely to seek and receive better support both materially and psychologically [35, 36]. This may be due to an increased capacity to travel and visit centers, to understand child disability issues and seek the required supports and hence have less unmanaged psychological burden resulting in low psychological distress among participants belonging to these classes.

Perceived high burden of care for the child was associated with high psychological stress in this study probably due to single-handed parenthood. This could also be to the declining of informal sources of support such as friends and religious groups that have been associated with reduced stress in carers of children with disabilities [26, 37,38,39]. Having low confidence in managing the disabled child was associated with more psychological distress. This is in line with similar studies that have shown that low confidence reduces parental self-efficacy in managing the child ending up stressing the parents and entire family [40, 41].

One of the most concerning factors in our study was that knowledge of one’s child disability was associated with increased psychological distress. This may be because parents who know about their child’s disability, focus more thoughts and attention on their child’s disability and its impact rather than focusing on the positive aspects of the child [42, 43]. Upon realizing that the child has an intellectual disability, which is incurable, thoughts and preoccupations about the disability may build up, and end up exacerbating distress among the parents [44]. This is important to consider when creating programs to support parents.

Finally, while feminine gender is a known predictor for distress [45], it was not significantly associated with psychological distress in this study. This could be attributed to the negligible sample size of men who participated in this study.

Our study has several strengths as well as a few issues to be considered. Our team has used a validated data collection instrument, one of only a few well validated for use in a sub-Saharan setting. Our study had an excellent response rate of 98.9% with almost all participants willing to take part in the study. Our study is the first to be conducted Malawi and the first one to have a definitive diagnosis of intellectual disability (through the use of the DSM-IV-TR) among all children of study participants.

The main limitation of our study was that it was center-based and gives only a reflection of prevalence rates of psychological distress in caregivers of children who are coming to a center. It is very possible that there are higher numbers of parents with psychological distress who may not bring their children to clinics and that the rates are actually higher. On the opposite front, it may be that parents of children with disabilities who suffer from psychological distress are more likely to come to a center, making the rates in our study higher than they would be in the community. We would not be able to gain this information without doing a community-based study. Secondly, is very difficult to determine the causal inference on whether caring the disabled child preceded the psychological distress as the data was collected at one point in time. Finally, as mentioned above, the use of parent self-report too for assessing psychological distress may not be a most reliable measure psychological distress due to over or under reporting by the participants [46, 47]. An observational study would be ideal but difficult to achieve. Finally, variables such as the type of intellectual disability (definitive clinician diagnosis) and the severity of the condition were not considered in the study and may have a significant impact on the parent’s psychological distress.

The generalization of these findings may also be limited to urban settings and surrounding environs because the study did not sample participants from the very rural and poor population where the prevalence may be higher due to the higher rates of socio-economic challenges.

Implication for practice and future research

Our study has demonstrated the high burden of psychological distress among parents of intellectually disabled children. This clearly highlights the need for the creation of interventions to support parents of children with disabilities which target the mental health and psychosocial well-being of parents. Our research has also highlighted the need for parents of children with disabilities in Malawi to be provided with education on childhood disability. Future studies which provided further evidence on the risk factors related to psychological distress for parents may be helpful. This would include studies which measured the functional severity of the child’s disability as well as the specific diagnostic conditions which are more linked with needing parental input and support.