Background
The onset and chronic presence of mental illness in the family can be a stressful event or a crisis for family members [
1]. Moving from a crisis to recovery in such families has been found to be influenced by their interactions with mental health professionals. Families that have ongoing contact with the mental health professionals are more likely to recover from the crisis and cope with the situation. Home based treatment programs for children and adolescents with mental disorders appear to be an effective and sustainable strategy for meeting mental health needs in this group [
2]. These programs would also be cost effective in countries where the health system is overburdened with infectious diseases and where psychiatric inpatient-care is limited. However, the success of such interventions requires compliance of patients and parents, and support from highly skilled therapists.
Parents and guardians play a major role in helping children grow and develop to their full potential. As children grow in the families they most significantly depend on their parents or guardians for basic needs support such as food, shelter, education, protection and care at all times but especially during life difficulties and times of crisis. Mental disorders in childhood and adolescence can be chronic and very disturbing, requiring proper attention, help and support from caregivers [
3]. Thus, parents or guardians and relatives living with children with mental illness have additional responsibilities and roles to care for them as they do for other healthy children. In this study ‘children’ means any male or female persons not more than twelve years of age, and a ‘parent’ is a biological mother or father or anybody who assumes that role. The importance of family support for the growth and development of children and the role it plays as a determinant of whether children will receive mental health care or not, can not be overemphasized [
4].
From the past until now the World Health Organization (WHO) mental health programme has not given due weight to child and adolescent psychiatry as compared to adults and the elderly [
3]. Yet from a demographic and epidemiologic point of view, mental disorders in children and adolescents represent an important area that needs proper attention. It is estimated that up to 20 % of children and adolescents suffer from debilitating mental illness [
5].
There are various ways in which child and adolescent mental disorders can be considered. One way is looking at these disorders in a priority manner based on their frequency of occurrence, degree of impact, therapeutic possibilities, and long term care effects [
3]. From this perspective, child and adolescent mental disorders that pose a significant concern include learning disorders, hyperkinetic disorders (ADHD), depression and its associated suicide. Others include psychosis, pervasive development disorders, attachment disorders, anxiety disorders, conduct disorder, substance abuse and eating disorders.
Specialized mental health services for children have not yet been established in Tanzania [
6]. The few existing mental health facilities in the country are mainly for adults. Children with mental disorders are treated in general wards and alongside adult mental patients. Psychiatric patients (including children and adolescents) are exempt from cost sharing charges for treatment. Medication is available but not always due to limited government support. When not available, parents or guardians are supposed to buy medicine for their children from private pharmacies. Moreover, the country lacks health care workers who are specialized in child and adolescent mental health. There are very few special schools for children with disabilities including those with mental disorders. Initiatives to advocate for social welfare of children with disabilities are taking place and the government is aware of that.
The major aim of this study was to explore challenges parents or guardians experienced while caring for their mentally ill children. Specifically, it aimed at identifying the psychological, emotional, and social problems they faced by living with a mentally ill child in the family, ways in which child mental illness interfered with economic activities in the family, and determining ways through which parents or guardians addressed these challenges.
Parents and guardians as main family care takers play a vital role in caring for mentally ill individuals including children and adolescents. Learning the challenges they face in caring for children and adolescents with mental illness is the first step in identifying ways to improve support for such caregivers. It is crucial that children receive appropriate care and support at home and during the outpatient visit to the hospital in order to meet their mental health needs. The scarcity of published studies in this area in Tanzania underscores the importance of this study to contribute towards better understanding of challenges faced when caring for mentally ill children. This study reports the psychological and emotional, social, and economic challenges parents and caregivers experienced and their reaction to the situation.
Methods
The study was conducted at the Psychiatric Unit of Muhimbili National Hospital (MNH) in Dar es Salaam, the economic centre and fastest growing city in Tanzania with a population of more than 3 million people. It has three districts namely Ilala, Kinondoni and Temeke. MNH is located in Ilala and is the nation government referral hospital with the highest specialized health services. It is a place where patients with complicated health problems from all over the country can be found. The psychiatric unit is one of the departments in the directorate of clinical services at MNH. Unlike other departments which receive referrals from all over the country, this unit only caters for patients who are referred from the three districts. Psychiatric services at this unit are provided in two major forms depending on age. Firstly, it is provided for adults who receive either inpatient or outpatient care, and more serious patients who require long term hospitalization are referred to Mirembe hospital located in Dodoma region which is a specialized national psychiatric hospital. Secondly, there is child and adolescent care which is usually provided on the outpatient basis. A special day has been allocated every week (Thursday) for children and adolescents to be seen by health care providers. According to the records obtained at the unit, about 30 children and adolescents were seen every week.
Respondents were parents or guardians who brought their children to attend the weekly outpatient psychiatric clinic at the unit. Convenience and purposive sampling methods was used. Respondents were recruited through the identified child and adolescent nurse counselor working at the psychiatric unit. The first author worked together with the counselor in recruiting respondents while waiting for their children to be seen by the health care providers. The inclusion criterion was a parent or guardian who had lived for at least six months with the mentally ill child. This was considered an adequate period for having reasonable experience. Parents/guardians who met this criterion and consented were included in the study.
Focus group discussions (FGDs) and in-depth interviews were used to gather data. A semi-structured interview guide was used to interview respondents. All interviews were audio-recorded and a note book was used to take field notes. During FGDs the moderator (author) led the discussion and kept the conversation flowing while the research assistant was recording the interviews and taking field notes. Basic demographic data was also collected from respondents after conducting the interviews. All interviews were transcribed verbatim. Two FGDs and 8 in-depth interviews were conducted. The first FGD was attended by 5 respondents (all were mothers) and the second one by 6 respondents (3 fathers and 3 mothers). Eight in-depth interviews were conducted with 7 biological mothers and one grandmother. Conducting in-depth interviews was stopped when no more information could be obtained from caregivers. The purpose of using FGDs was to help get general information and ideas that were further explored during in-depth interviews.
Analysis of data was done by using content analysis which consisted of reading and re-reading the text, manual coding in the margins, and through memos, synthesizing and grouping of data in relatively exhaustive categories [
7]. Data was analyzed in the original language (Swahili) in order to minimize the possibility of losing the original meaning of concepts. Analysis of data was done by the two authors and whenever there was a discrepancy in forming codes, categories or themes discussions were done to reach a consensus. Additionally, the analysis process was audited by a third person who was not part of the study but who is conversant with qualitative methods. Translation into English was done for what was included in the report.
The ethical approval of the study was obtained from the Research and Publications Committee of Muhimbili University of Health and Allied Sciences and permission to conduct the study was obtained from Muhimbili National Hospital. Written informed consent was sought from all participants prior to interview sessions.
Results
The respondents’ demographic data and their children’s particulars are summarized in Table
1.
Table 1
Caregivers’ demographic data and children’s particulars
ID10501JAii F10424JAi | F | 33 | Married | Mother | STD VII | Home Mother | 10/F | Autism |
F10424JAii | F | 37 | Married | Mother | STD VII | Home Mother | 11 | Mental retardation |
ID10501JAi F10424JAiii | F | 33 | Widow | Mother | STD VII | Home Mother | 7/F | Seizure disorder & ADHD |
ID10430JAi F10424JAiv | F | 36 | Single | Mother | STD VII | Petty Business | 9/F | Seizure disorder & Mental retardation |
ID10430JAii F10424JAv | F | 60 | Married | Mother | None | Home Mother | 8/M | Autism & Seizure disorder |
ID10502JA | F | 51 | Widow | Grandmother | STD VII | Home Mother | 3/F | Seizure disorder & Mental retardation |
ID10503JA | F | 33 | Married | Mother | None | Petty Business | 10/F | Epilepsy & Learning disability |
ID10504JA | F | 39 | Married | Mother | Form IV | Catering and Decoration | 11/F | Autism & Seizure disorder |
ID10506JA | F | 42 | Married | Mother | Bachelor’s Degree | Police Officer | 5/M | ADHD & Seizure disorder |
F10508JAi | M | 38 | Separated | Father | STD VII | Vehicle mechanic | 11/M | ADHD & Mental retardation |
F10508JAii | F | 26 | Widow | Mother | None | Home Mother | 8/M | Seizure disorder & Mental retardation |
F10508JAiii | M | 38 | Married | Father | Bachelor’s Degree | Engineer | 5/M | Autism |
F10508JAiv | F | 37 | Married | Mother | STD VII | Home Mother | 12/M | Epilepsy & mental retardation |
F10508JAv | M | 45 | Married | Father | STD VII | Petty Business | 9/F | Mental retardation & Epilepsy |
F10508JAvi | F | 40 | Married | Mother | STD VII | Home Mother | 11/M | Autism & Seizure disorder |
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,
"
“Really I have accepted it because I have already been given, but it’s a big task, it’s a very big task to care for a child with mental disability”.
{F10424JAi}"
Another mother of a child with mental retardation and seizure disorder emphasized:
"
“…yes we have been disgusted (tunakerwa), but God has already planned it for you, and you have no any other way”
. {F10508JAii}"
The inability of the child to express needs was another source of psychological and emotional distress associated with living with mentally ill children. This caused parents to be unable to understand the child especially when he/she had problems. Sometimes when the child went out, he/she was mistreated by other people and returned home crying. When he/she was asked by the parent to explain what happened he/she couldn’t explain, as expressed by a father of a child with autism:
"
“The challenge I face is that that child can not express his needs … Sometimes he may be sick and you don’t know, he just cries, when he has problems he just ends up crying. Now you don’t know why he is crying, and sometimes when you touch him and feel that he is hot then you may guess that this could be malaria and take him to hospital. But when he has like stomach ache you can’t understand, you just see him crying,…”
{F10508JAiii}"
Social challenges
Caring for a child with mental illness was found to be associated with many social challenges. Social services, stigma and caring responsibilities were areas which posed major concerns for parents. Other important issues included a lack of public awareness, social support, and social life.
Inadequate social services for children with mental disorders was the most challenging issue for parents. They were concerned about education for the child and to a lesser degree hospital care. The most distressing aspect was inability of the child to acquire education due to an inadequate number of schools. Parents spent a lot of time looking for schools that could accommodate the child as explained by a mother of a child with mental retardation and seizure disorder:
"
“…I was told to take her to Uhuru Mchanganyiko (primary school for children with various disabilities); I went there because she has mental and visual problems. When I got there they told me they would not accept the child and that I should take her to Mtoni Special School (another school for disabled children). Until now, when I go to Mtoni special school they tell me there is no vacancy. There are no school opportunities for these children or their schools are very few, you see.”
{F10424JAiv}"
Parents whose children were lucky to be recruited in the special schools were experiencing other problems. Their children could not understand anything that was taught at school and had transport problems especially because of the traffic congestion in the city of Dar es Salaam. They could not take their children to school because they could not afford bus fare, as explained by the mother of a child with autism and seizure disorder:
"
“She goes to school but she doesn’t understand…… she just goes to school but there is nothing she understands at school”
{ID10504JA}"
Another mother of a child with autism and seizure disorder added:
"
“The first difficult thing about it is that I haven’t found the school. Money is needed, as he (the child) is supposed to stay there (at school) because we can not afford for him going and coming back since we are not able to. Schools like Buguruni require having money.”
{ID10430JAii}"
With regard to health care services, parents were generally satisfied with services at the MNH Psychiatric Unit, as expressed by the mother of a child with epilepsy and learning disability:
"
“The service she (the child) receives is really good, they do their best at the hospital…I am satisfied with this service.”
{ID10503JA}"
However parents complained about: long waiting periods before they were seen by the doctor, spending too little time with the doctor, out of stock medications, lack of speech therapists in the country, and lack of proper facilities such as toilets. A mother of a child with seizure disorder and mental retardation complained:
"
“With hospital services, for example it is very far where I come from, you can arrive there (at the clinic) maybe at 8:00 AM. From that time you may see the doctor may be at 11:00 AM. So it really becomes a problem because you sometimes leave home before the child had tea. Now you stay there with the child until 11:00 AM, it becomes a problem…I would like that if we just get there we should be seen early, then we leave. Sometimes you may stay there for a long time and because of hunger the child starts troubling you, it really is a problem. … I was not happy with that thing, the toilet, it should have been a squat toilet (choo cha chini) (as opposed to western type) the normal one, that would have been good”.
{ID10430JAi}"
Living with mentally ill children was found to be associated with stigma. Parents were troubled by the mentally ill child being mistreated, discriminated against and segregated in the community. Sometimes the child was told words that made him/her feel bad. Parents were laughed at and told bad things about the child.
The child was mistreated by people in various ways. Sometimes he/she was labelled and made fun of at school, considered to be useless and even rejected by the parent because of the disability. A mother of a child with epilepsy and learning disorder explained:
"
“…My child is in primary school, she goes to school and comes back complaining that she is being called a crazy person (tahira). She really feels bad (anajisikia vibaya) and when she comes to the hospital she tells her doctors…”
{ID10503JA}"
Parents were sometimes held responsible for the child’s behaviour. They were thought to be spoiling the child by not being strict enough when the child was behaving strangely. Furthermore, some parents were told they had caused the child to become mentally ill as a means of getting rich and becoming successful in life (it is common to see disabled children with their parents in the streets begging). A father of a child with ADHD and mental retardation explained with sadness:
"
“Let me add to what I have said. It is true, according to the prevailing situation when people see those children the majority of them say we have caused them to become sick as way of getting money and becoming successful in life.”
{F10508JAi}"
The burden of caring for the mentally ill child was found to be mainly borne by the mother. Mothers complained about the role that fathers played in everyday care of the child. They expressed that some fathers were only supporting the child financially and others did not care at all. The grandmother who was taking care of the child with seizure disorder and mental retardation whose mother was dead commented:
"
“…Now the burden of care is upon me. The father doesn’t love her (the child) very much. Sometimes you may tell him that you have a problem with the child and he will tell you to just wait. Now that’s just like totally not being involved in the care of the child.”
{ID10502JA}"
Ignorance about mental disorders was perceived by caregivers to be common in the community. Some children with mental illness and their parents suffered stigma and mistreatment out of ignorance. A mother of a child with autism and seizure disorder explained:
"
“The public should understand these children. If you go with her to some place everybody is surprised, you know, even the child wonders why they get surprised at her. They really don’t understand and I don’t know how. They think it’s something that does not exist…”
{ID10504JA}"
Parents in this study expressed their concern about not receiving the needed support from neighbours and people in the community. Some people could not even give help when they found the child in a critical condition like having seizures. One mother of a child with autism complained that people sitting in the commuter bus would not help her by giving her a seat when she was standing with the child on her back.
"
“I have to carry the child from home, board the bus …somebody in the bus may see you carrying the child while you are standing without even letting you sit.”
{F10424JAi}"
The social life of parents was found to be disrupted by the presence of a mentally ill child in the family. Sometimes parents avoided going with the child to social gatherings such as church because of the child’s disturbing behaviour. Parents also experienced conflicts in the community and sometimes were even accused when the child destroyed somebody’s property. This created tension and resulted in lack of peace especially with people like neighbours. Sometimes the love life of a mother was affected for reasons related to having a mentally ill child. One mother of a child with ADHD and seizure disorder who avoided having another child with a new partner in case she was overwhelmed by caring responsibilities explained:
"
“…Who knows? He (the partner) went to see his friends there… they said to him, “How can you stay with a woman and just take care of her child? After all she (the child) is crazy, and so on. She doesn’t want to have a child with you, I don’t know what!” Then that person (the partner) ran away from me, we were staying in the same room.
” {ID10502JA}"
It was noted that mentally ill children were vulnerable and suffered mistreatment from people by being beaten, pushed, and burned. The child who could not speak seemed to be more vulnerable since he/she could not mention a person who was responsible for the cruel action when parents wanted to know. A mother of a child with ADHD and seizure disorder said,
"
“…may be she (the child) goes and touches somebody’s property, or in doing so she makes somebody’s water dirty. The owner will come out with anger and will beat the child with a fist in the head or pinch her knowing that the child will not say. The child comes back crying and when you ask her she doesn’t understand you.”
{F10424JAiii}"
These children were also reported to be at risk of being physically and sexually abused such as being burned or raped as explained by a mother of a child with seizure disorder and mental retardation:
"
“…for example, one day I left my child with the house girl. She dared to take the spoon that she was using for frying and applied it on the child’s skin. When I came back I found the child with marks of wounds on the body………there is another child in the neighbourhood who is also disabled. That day her mother went to the field in the morning leaving the child still asleep with instructions to follow her to the field. When that child got out to follow her mother there was a man nearby who called her into his house and did to her a very bad thing (shedding tears), just last week…he raped her. We really need to be very close to these children. The issue of being raped makes us to be with them so that they don’t suffer such actions”
{F10424JAiv}"
Economic challenges
Three major themes emerged that explained how living with a mentally ill child interfered with economic activities of the families. These were: existing poverty, interference with various income generating activities, and extra expenditure due to the illness.
Poverty was revealed by parents as being responsible for their inability to meet certain important needs of the mentally ill child. Some parents were house wives who did not have any means of earning income and depended solely on their partners; those who did not have partners expected to get help from other people, especially relatives. This was a problem if they could not get the help they needed. They (including fathers) could not manage buying drugs for their children when they did not receive them at the hospital. They also could not afford bus fare to attend the clinic with their children on the day of their appointment. A mother of a child with autism explained:
"
“…From here you may go to the hospital’s drug unit…you may find that you get only one type of drugs while you have a prescription of two or three drugs… If you go to a (private) pharmacy you find that it’s 500 shillings (US$ 0.36) per pill. Now with our income in this situation; house rent, water bills, everything, transport charges, you may reach a point where – I once spoke with my mouth, and may God forgive me, that instead of giving me these problems he should have taken him (the child), I reached that point
…” {F10508JAi}"
Daily life and activities of parents in this study were very much affected by the presence a mentally ill child. Much time was spent looking after the child and as a result they were not able to do other important activities such as business. Income generation in the family was affected and this further escalated family poverty as explained by a mother of a child with seizure disorder and mental retardation:
"
“Care responsibilities for such children are very cumbersome; you need to stay with them for a very long time so that you watch over them from morning till evening. Your activities will be limited only to the home environment; you can’t go out for activities to earn a living apart from being home.”
{F10424JAiv}"
Measures to address challenges
Parents expressed various ways they used in order to address the challenges they were facing by living with a mentally ill child. A variety of coping mechanisms were employed in different situations depending on what seemed to be helpful to the parents. They sought professional and spiritual help (from religion and traditional healers). One mother whose child is afflicted with autism and seizure disorder expressed:
"
“It is the hospital, it’s the hospital that has helped her (the child) to be honest. If it was not for the hospital her condition would have been worse. I have done everything I could; I have not stopped going to the hospital since she begun having the problem. It is 11 years now she is on medication…”
{ID10504JA}"
Other measures parents took included training the child to do what she/he could not do such as toilet training and speaking, involving other family members such as siblings in the care of the child, and seeking information about the child’s disorder from sources like the internet. Due to the nature of some disorders and the behaviour displayed by the child, some caregivers tried to control the child’s environment for safety reasons.
The focus group discussions and in-depth interviews served as psychological relief for parents as they had the opportunity for somebody to listen to them. After a FGD one respondent who had a child with autism gave a comment which was supported by the rest:
"
“Just having somebody listen to you like this makes you feel better”.
{FN10508JA}"
This was also the case at the end of an in-depth interview with another respondent whose child was afflicted with ADHD and seizure disorder:
"
“Thank you very much Mr. Joel (the author), I am also happy because I have at least had someone to listen to me, I have never had such opportunity…”.
{ID10506JA}"
Authors’ contributions
JSA did all the work from research proposal development, data collection and analysis, and report writing. Dr. AO supervised the whole work from proposal development, ensuring proper data collection instruments, relevant data analysis method, and adherence to ethical issues and paper writing skills. She was involved in the step by step process of data analysis and formation of themes.