Psychological and emotional challenges
Four major themes emerged from the study that explain the psychological and emotional challenges that parents experience in the everyday life of caring for the mentally ill child. These were: disturbing thoughts, emotional disturbance, unavoidable situation, and communication problems.
A number of respondents revealed having disturbing thoughts about living with a mentally ill child. They expressed being stressed by the explicit behaviour of the child that caused problems not only for the parent but also to people nearby such as neighbours. Behaviours of the children that were of particular concern to parents were being aggressive, destructive, restless or hyperactive, making noise, and lack of proper eating skills. A father of a child with autistic disorder explained:
" “It is very true, it’s a problem, there is a problem because the way he is you can clearly see that he completely does not fit in the community. His actions are different and, of course, not accepted by other people. You may decide to go with him to some place, for example if you look at the appearance of my own child you may think he is just okay. But his actions are so disgusting (kukera) that you can’t go with him anywhere; to church or so, he just has to remain at home, it’s really a problem”. {F10508JAiii}"
Worrying about the future life of the child was another form of disturbing thought that some parents experienced due to the inability of the child to accomplish personal and social needs such as self-care and education. They showed these concerns when the child could not do certain developmental tasks expected at specific ages such as feeding, toileting, bathing, and dressing, as expressed by a mother of a child with autistic disorder:
" “Truly, what I am afraid of is that it will be more difficult later in life. This is what makes me fail to sleep all the days, I keep thinking only about that and my husband and I quarrel about that everyday. Just imagine, now you have to wash her since she soils herself with faeces and urine, now when she grows up it will become a very big task, it will really become a big task. … My greatest concern is after menarche (kuvunja ungo); what I am thinking of is after menarche and this is a big test”. {ID10501JAi}"
Parents were also disturbed by the complexity of caring responsibilities that demanded a lot of work and being available most of time to meet the daily needs of the child. The issues about how to handle the child and ensure security if the parent died was expressed by one father of a child with mental retardation and epilepsy:
" “I accept to be meek and gentle because I know it is God who has intended for the matter to be like this, but it’s a big burden to me because that child is always restless. He can not even sit down with others for a minute, he likes seeing himself wandering and he feels good. So in the process of wandering he gets lost, and there we are staying near the road. Therefore the mother doesn’t do anything other than looking after (kumwangalia) the child all the days of her life for two years now, and we don’t know what will happen in the future.” {F10508JAv}"
A mother of a child with ADHD and seizure disorder said,
" “Until now I don’t know how my child’s condition will be if, let’s say I die. This is because I don’t have any sister, mother, or father who can take care of my child in that condition ………let’s say I die now, I don’t think she will be in a better condition…” {ID10501JAi}"
Living with a mentally ill child was described as emotionally distressful by parents. Varying degrees of emotional distress were experienced which included having feelings of sadness and inner pain or bitterness. Parents experienced these negative emotions due to disturbing behaviour of the children, extra care-giving responsibilities, family and social problems caused by the child, and people’s perception about families having a mentally ill child. A sad mother of a child with autism explained:
" “I really somehow grieve (sononeka), I just accepted it (having a mentally ill child), but I really grieve because I really suffer (pata shida) a lot from this child…now when I look at this child with disability and the challenges of care, it makes me grieve…” {ID410501JAii}"
Parents described living with or having a mentally ill child as a disturbing and yet unavoidable situation. They had to accept it since they had no other alternative. They viewed their caring duty for the child as very difficult and distressing. This was stated by some participants when they were responding to the question about how they generally viewed the situation of having a mentally ill child at home. One mother of a child with autistic disorder said,