The lifeworld of mothers who care for mentally retarded children : the Katutura township experience

This article reports on a research study done in Katutura Township, near Windhoek. A qualitative, exploratory, descriptive and contextual design was followed to answer the research question investigating experiences of mothers caring for mentally retarded children at home. Phenomenological interviews were conducted with a purposefully selected sample of twelve mothers. The meaning of their experiences was analysed by using Teschxs method (1990 in Creswell, 1994:155) of analysing qualitative data. The results indicated various emotions and challenges experienced by these mothers during the care of their children. Feelings of shock, despondency and sadness dominated the early stages when the retarded children were still young. During later years, as the children were growing up, the mothers felt shame, fear, frustration, anger, disappointment and worry. However, acceptance followed, as the children grew older. Stigma seemed to affect all the respondents. Support in any form or lack thereof seemed to be the decisive factor-positioning mothers along a continuum of two extremes, namely despairing isolation and integrated happiness. Recommendations were made regarding the improvement of heath care services and education of the mothers and their families.


Introduction
Like all other developing and even developed countries, Nam ibia has a sig n ific a n t incid ence o f m ental re tard atio n in ch ildren.In a study conducted by Sartorius and Graham (1984:208) in eight developing countries in Asia.South America and West Africa to investigate child mental health, it was found that 13-18% o f children who presented at health care services in rural areas at that stage suffered from one or another form of mental disorder.The investigation further revealed that in urban slum areas the incidence was between 25-30% or higher.Baumann (1998:375) observed that when a mother has to care for a mentally retarded child, she suffers great levels of stress.In addition, she may experience loss of earnings from having to give up work to care for the child.In Namibia, the impact of caring for a mentally retarded child on the mother is still unknown.In 1998, the Ministry of Health and Social Services of the country established a mental health programme under the Directorate of Primary Health Care (GRN/M HSS 002/1998).This programme undertook a national needs assessment survey of major mental health problem s like schizophrenia, major depressive disorders, anxiety disorders and b ip o lar d iso rd ers, but m ental retardation among children was not included.Although the Windhoek State Hospital has always had a psychiatric unit, this served only the adult population of mentally ill patients.Only mentally retarded children who present with behaviour problem s w ould be seen occasionally, but as outpatients.The interventions afforded to this latter group were m ainly curative.N euroleptic treatment would be given to stabilise the child, who would then afterwards be sent him/her home to be cared for by the family.There is much work envisaged in mental health care within the primary health care approach in Namibia.Vranckx (1996:2) noted that in future the focus will cogently not only be on m ajor psy ch iatric disorders, but also on emotional factors that p lace an ad a p tiv e strain on individuals, thus leading to maladaptive behaviour.Caring for a mentally retarded child at home may be an obvious strain on the mother.There is an apparent lack of knowledge about the experiences of mothers who care for mentally retarded children in Namibia, and especially in the townships.
In 2000, a non-govemmental organisation called C hildren w ith H andicaps in Namibia (CHAIN) opened a day care centre in Katutura and Khomasdal to assist children from these townships.Taimi Nangombe, the head of the centre, told a newspaper reporter at the launch o f the centre th at the group o f 46 accommodated at the centre at that stage were but a small number of the many in the tow nship w hose m others w ere demanding institutional care, because of the inherent burdens in caring for these children at home.The present study on which this article is based, sought to explore by means of qualitative research the ex p erien ces o f m others in the Katutura Township, near Windhoek who care for their mentally retarded children at hom e.The study sig n ifican tly b roadened the know ledge and the understanding of the hardships borne by m others in caring for their mentally retarded children at home.A set of guidelines was developed from the outcome of the study for supporting this population of mothers and their children.These guidelines would also assist the mental health programme of the Ministry of Health and Social Services regarding services planned for this group.

Problem statement
Having a mentally retarded child brings strain and frustration to the mothers.Some m others lose their social life co m p letely and th eir h usbands or partners reject them because the child is mentally retarded.The rejection by their p artn ers often leads to fu rth e r the mothers' emotional distress and social isolation.Literature indicates that the impact of caring for mentally retarded children is the greatest challenge facing families.A study by Katwishi (1998:1), w hich was co n d u cted in Z am bia, investigated the impact of impairments of child development.Observations made were that it was a great challenge to families most of whom "live in the pockets of poverty".Lea (1989:256) studied the impact of raising a handicapped child, and identified emotional phases, which families exhibit in response to the child's handicap.O ther studies found that having a mentally retarded child is an emotional issue and one which can cause acute upset and anxiety for parents, even several years after discovering that the c h ild is retard ed (L e ad b etter & Leadbetter, 1993:117;Lacey & Ouvry, 1998:168).Lacey and Ouvry (1998:168) found that the stress might be increased by the failure of service providers to give sufficient support to meet the needs of the caregivers.Sartorius and Graham (1984:211) advise that more research be conducted in areas of mental health assessm ent o f ch ild ren .The epidem iology of severe retardation, especially in developing countries as well as the coping strategies o f fam ilies, especially those used by mothers with the "outer reality" of having a mentally retarded child, and the "inner reality" of feeling the loss of a desired, normal child.In South A frica, D avids (1992in Maluleke, 1993) did similar studies among coloured families in Cape Town, Van Staden and Gerhardt (1994) among white families in Pretoria, and Maluleke (1993) among black families with profoundly retarded children in Katlehong Township near Germiston.In Namibia, no study ever investigated the experiences of mothers caring for mentally retarded children in the township.The study that led to this article was th ere fo re a realisation of the need to explore the experiences of mothers who care for mentally retarded children in the Katutura T ow nship near W indhoek and to discover inherent stressors and their coping strategies.

Research design
A qualitative, explorative, descriptive and contextual design was used to explore and describe the experiences of caring for a mentally retarded child at home as lived by their mothers in the township in N am ibia.The re searc h er used the phenom enological approach o f the qualitative paradigm.To adhere to the criterion of consistency (d ep en d ab ility ), the research er conducted two pilot studies and then interviewed several participants until saturation of data was reached, when the same themes started reappearing in the data.She watched the variability of the interview encounter by noting personal, th eo re tic al, elec tiv e notes and observations that were included in the findings of the study (Krefting, 1991:216).Neutrality is the fourth criterion of trustworthiness; it is the freedom from bias in the research process and results.To ensure objectivity the researcher's findings were a function solely of the informants and conditions of the research and not the function of the researcher.To ensure that the data and the analysis thereof are free from bias she adhered to rigor of the methodology.The data was co n firm a b le as a product o f the phenom enological narratives of the participants.She postponed any review of literature until the data was analysed.

Sampling method
Participants in the study were included by way of "purposive or judgemental sampling", a non-probability sampling m ethod which involves a conscious selection of participants (Bums & Grove, 1997:306).The research sample met the criteria of selection and was willing to participate.The m others had to be residing at the Katutura Township and caring for th eir m entally retarded interviews were children at home.The mentally retarded children were not to be at a day care centre as the study objective was to discover the coping measures of mothers in looking after the children at hom e.They had to be able to com m unicate in either A frikaans or English.The choice of the two languages was because the researcher is proficient in these languages.In Namibia, there are about eleven indigenous languages spoken, however the language most used to communicate by people of different ethnic backgrounds, is Afrikaans.Twelve open-ended interviews were conducted with m others of m entally retarded children.According to Sandelowski (1995:180), when using qualitative research, events and experiences and not people per se, are the objects of purposive sampling.The mentally retarded children had to be o f the age ranges six to eighteen years, because some forms of mental retardation can only be detected at school going age (L eadbetter & Leadbetter, 1993:117).The level or degree of mental retardation of the children was excluded because in Namibia there is no state-funded facility for IQ testing.

Description of the sample
The sample in the study comprised of twelve participants.All were mothers of one or more mentally retarded children.They were of different age and cultural background (see Table 1.1).

Data collection method
The re searc h er conducted phenomenological interviews with twelve participants until there was evident repetition of discovered information and confirmation of earlier data, in other words saturation (Streubert & Capenter, 1995:24).One central question was used, namely: "How do you experience caring fo r your m entally retarded child at home? " (Hoe beleefu die versorging van u verstandelik gestremde kind by die huis?).An audiotape was used to collect and capture data.The respondents did not express any problem s with the use th ereo f nor the taking of notes (observational, theoretical, methodolo gical and personal).Data were later transcribed verbatim from the tapes.A w orking re la tio n sh ip w ith the respondents was developed by cu ltiv atin g th eir goodw ill and by  contouring the researcher's behaviour to fit in with them and reducing social distance (Wilson, 1989:424) (e.g. by wearing simple home clothes whenever going to conduct the interviews in order to bridge differences).P h enom enological reduction or b rack etin g was used during the interviewing process (Kvale, 1983:184-185;Streubert&Capenter, 1995:44).Trust and rapport were attained by using communication and therapeutic skills, em pathy, congruence, and genuine acceptance (Uys & Middleton, 2004:144).
The interviews were carried out in the relaxed atmosphere of the respondents' own homes, thus genuine cooperation was obtained.The engagement was also prolonged and extensive (spending at least an hour per respondent).Field notes were kept during the investigation.These notes consisted of observations made during the interv iews.

Data analysis
D ata w ere not an aly sed until all interviews had been completed, that is when no more new experiences were reported and information redundancy or th eoretical saturation was attained (Lincoln & Guba, 1985:201).The methods suggested by Sandelowski (1995:182) for proofing the transcripts were used.The audiotaped interviews were listened to repeatedly, comparing them with the transcriptions.During this process, key phrases were pointed out and sentences and even feelings expressed by the respondents were noted.After proofing the transcripts, information was sorted into categories to form a story (Creswell. 1994:153).
The Tesch (1990)  Assembling the data belonging to each category in one place and performing a preliminary analysis.The transcriptions together with field notes were sent to an " independent coder" (Creswell, 1994:158) for analysis.The independent co d e r was an experienced researcher who previously had supervised several q u alitativ e studies of postgraduate nurses.There was a consensus discussion o f the independent findings of the investigator and the co-coder.The coding process led to the emergence of themes, which were refined during the consensus discussion with the co-coder.The researcher and the co-coder agreed on the categories, subcategories and the themes identified in the transcriptions.These may be found on Figure 1.1.Data from the interview transcripts were grouped into five main categ o ries (em otions, re la tio n sh ip s, social circum stances, physical needs and support) and subcategories.Themes w ere id en tified and dev elo p ed to substantiate each category.
The details of the participants' relating of their experiences in caring for mentally retarded children may be found in Table 1.2.The subcategories and themes were grouped to g eth er as p leasan t and unpleasant experiences, in order to make the discussion brief.
T his study revealed pleasan t and unpleasant experiences in caring for the m entally retarded children by their mothers.This is consistent with the study by H ilbert, W alker and R inehart (2000:158) who studied the responses of parents caring for children with the S turge-W eber syndrom e (a rare, progressive congenital condition marked by developmental delays, seizures and cerebral haemorrhage).The latter study revealed both positive and negative aspects o f caring.T here was the dimension of satisfaction and self-worth the caregiver may derive.This is the positive aspect.There was also the burden and hardships of caring.This is the negative aspect.

Results and discussion
The discussion will be based on the schematic condensation of the data in Table 1.2.The discu ssio n will be highlighted by direct quotations from the participants and accompanying literature control.

Acceptance and love
It is significant that in all transcribed interviews, participants verbalized their feelings of acceptance and love.This is evident from statements such as: ' Also in this subcategory, it was clear that this acceptance and love comes over time.In the early stages, all the participants tell a story of how it was difficult in the beginning, but as time went on, they became more resigned and accepting.This is evidenced by quotations like "Maar met ja re het maar aangepas aan a l l e s " (W ith tim e we adapted to everything).This experience is supported by the findings of Maluleke (1993:57-59)  functioning in Katlehong Township.A cceptance and love for the child ultimately was attained, but much stress was experienced when the children were still young.

Feelings of despondency and sadness
These feelings were universal to mothers during the early stages when the retarded children were still young.The following direct quotation highlights this aspect: "/ could have died that time; I could have felt better " Some participants describe how their sadness and despondency was preceded by a state of shock: "Toe ek vir haar vir die eerste keer gesien het, het ek benoud g e v o e l" (When I saw her for the first time, I caught my breath).Some participants described how in their despondency and sadness tried to deny the experience: " For a long time I thought the sister gave a wrong child " Some mothers still expressed the feelings of despondency and sadness after many years, long after the stage of acceptance.This became clear from statements like "Soms is dit moeilik om te sê vandaag is ' n mooi dag... " (At times it is difficult to say today is a beautiful day).This finding is consistent with that of Mallow and Bechtel (1999:31) who studied chronic sorrow experienced by parents w ith ch ild ren who are developm entally disabled.These researchers described the period when the child is initially diagnosed as one of crisis and disequilibrium and may have an impact on family functioning and cohesion.Joubert (1988:164) studied intervention strategies and theoretical approaches in assisting families with mentally retarded children.She refers to responses ranging from shock, sadness, d isappointm ent, h o p elessn ess and chronic sorrow.

Fear and shame
In this theme, a strong trend emerged that there were many misconceptions about the cause of mental retardation, mainly due to ignorance.Most participants saw it as somebody's fault, someone had to be blamed and it was shameful.The following quotations demonstrate this: "When he saw my child maybe he became afraid." " I was ashamed to talk about my child " Some families were ashamed and this was part of their rejection: "My own fam ily fe e l strange and fea r to touch my child " The com m unity did not feel shamed because it is not their own family; they wanted nothing to do with the mother and her m entally retarded child or children.They lacked understanding and they mocked the children.This is clear from the q u o tatio n below : "Soos die skoolkinders vir haar so terg, moet ek haar in die huis probeer hou." (Because of teasing by schoolchildren, I must try to keep her inside the house).Herrick, Pearcey and Ross (1997:22-23) studied stigma and ageism.They found that stigm a is asso ciated w ith the devaluation of a person because he /she are d iffe ren t.The fe ar and sham e experienced by mothers in this study was clearly associated with the stigmatisation by the community.Hannam (1980:67) studied parents of handicapped children and he found that parents expressed fear and shame to ask for babysitters because they would have to deal with soiled bedding of the handicapped child.

Anger and frustration
The them e o f anger and frustration featured predominantly in participants whose social circumstances were not satisfac to ry .F in an cial d ifficu lties contributed to feelings of entrapment and not having life.Where there was family or spouse support and financial adequacy the feelings of anger and fru stra tio n was less.A nger and frustration were manifested in statements like: "My life is affected too much.I ca n n o t have a norm al l i f e ". "I cannot go anywhere.No one comes to see me ".M allow and B echtel found sim ilar experiences among fathers of children with developmental disabilities.Fathers' em otions turned to frustration and re sig n a tio n , w hile the m others experienced a greater resurgence and intensity of sorrow.Hibert et al (2000:159) found that mothers of disabled children who received less emotional support from family and friends felt more frustration and functioned poorly.

Worry
Mothers clearly expressed worry about various issues, like "And i f he dies, he is not baptised...my child won 7 go to God. " "Ek dink ook daaraan wat sal gebeur as sy erger raak en ek het nie meer krag om haar te hanteer n ie " (I think a lot about what will happen when she gets worse and my strength is too frail to control her)."I cannot work now, but / d o n 't know when my child will be better." Hannam (1980:67) found that when there were small children as well as the mentally retarded child there was always the worry and fear that this child would harm the others.Worry about the well-being of the mentally retarded child and that of the family members is similar to the worry expressed by families of mentally ill members (Ip & MacKenzie, 1998:290-291;Sveinbjarndottir &de Casterlé, 1997:45 andRose, 1997:23).Maluleke (1993:57) found that another source of worry and distress for the parents of physically handicapped children was the lack of specialised schools in the township.Spouse / P artn er uncon d itio n al acceptance and love.Spouses and partners of the participants in this study were significantly rejecting and ambivalent; however, three out of tw elve ex pressed uncon d itio n al acceptance and love to the mother and the mentally retarded child.Typically, these fathers were protective, supportive, available, shared responsibility and were caring.The boundaries between these fathers and the mother-mental ly retarded child/children were open.They shared the mother-child context, yet they still had their lives outside this context.This phenomenon is explained by quotations such as: "He loves the child very much and he g a ve her his m o th e r 's n a m e " "Sy is baie aan die pa se hart, meer as al die ander kinders " (She is very close to the father's heart more than all the other children) "He spends most o f the time at work, he understands and accepts the situation.He goes to p la ces alone, fu n era ls, weddings, church and even shopping " The phenomenon of acceptance and love by the spouse also played a very decisive role in positioning the mother along the continuum.In this study, mothers of m entally retarded children whose spouses / partners showed love and acceptance were happy, not isolated, were integrated and were defiant to stigma and had no shame.Nowhere in the literature reviewed was there mention of spousal or partner rejection.However.Mallow and Bechtel (1999:32) cited work by Newacheckand Halfon (1998) who studied families with chronically ill children.They found that chronic illness in children adversely affected family healthy patterns.The mothers' emotions most often radiated into chronic sorrow w hile fa th e rs' reactio n s m oved into resig n atio n .Hannam (1980:69) also found that the burden of caring for the mentally retarded child fell on the mothers, for them there was no escape.The fathers could at least get aw ay to w ork, and im m erse themselves in it and forget the problems at home for a while.

Category II: Relationships Protectiveness
There were dynamics of love, care and protectiveness on most participants' v erb alizatio n s; these w ere often differently motivated.Some of them were motivated by duty: "Daarom voel ek, ek is die enigste ene wat vir my kind kan sorg ". (Hence I feel, I am the only suitable one to care for my child) Some of them were motivated by pure love: "I can only fe e l love, real protecting love fo r my little ones " Some of them were motivated by guilt: "Ifeel bad that I bring only problems to my sister, but I care fo r my child" Some of them were motivated by the belief that they are simply ordained: "God gave me such a child, so I will just help my child " Hannam (1980:67) also found that parents of mentally handicapped children were very protective and would not even entrust them to someone to sit in for them.Most families in the same study reported over-indulgence over the handicapped child and almost neglect of their siblings.

Rejection by spouse I partner
Most of the fathers of the children in this study rejected the mother and her child or children and decided not to have anything to do with them.Some partners and spouses d isap p eared from the context of the mother and her mentally retarded child or children.The rejection is about blam e, fear, sham e and ignorance.The rejection was evidenced by quotations like "I went to his home several times to ask fo r money but he becomes angry and says this is not his child"."Hy het al vyf beeste vir my ma gegee, ons sou getrou het, maar na die haba, hy het dit nie meer genoem nie." (He had paid five cattle to my mother, we were to marry, but after the baby, he never mentioned it again).Some fathers becam e resigned and ambivalent; they only performed their basic duties "Ek sal nie kan sê hv het my kind lief nie, want hv gee net kos en klere maar hy soek nie die kind naby hom n ie " (I cannot say he loves the child, because he only gives food and clothes but does not want the child near him).Mallow and Bechtel (1999:32) cite similar reactions in their study.They reported changes in the marital relationship due to care for the developmentally disabled child being linked to paternal feelings of exclusion and inferiority in the father role.Hilbert, Walker and Rinehart (2000:158) also re p o rted that carin g for a developmentally disabled child requires the adjustment of schedules, roles of family members and patterns of parental intimacy.Hannam (1980:69) reported that relationships in other houses were strained, because of broken night sleep, when the child had been naughty or sick.

Rejection by in-law relatives
The them e o f rejection by in-law s appeared significantly in the data and interestingly there was no one mention of an accepting or supportive in-law family.The participants either mentioned rejection by in-laws or did not refer to them at all.Feelings expressed regarding in-laws were "I f my child was normal I know they would help me " "Oe! Sy ma is my doodkis se spyker... .syma sé ek is 'n heks " (Oh!His mother is a nail on my coffin... she says 1 am a withe).Katwishi (1998:256-257), found similar results in Zambia.The in-law family w ould in sist that the fath ers of handicapped children should leave their wives and marry new wives.Consistent with this study is that this researcher maintained that the rejection was also about blam e, ignorance and lack of understanding.Hannam (1980:67) also found that not all mothers and mothers in-law were an ideal source of help, some in-law families especially mothers in-law were very supportive, yet other own fam ilies were not supportive at all.Contrary to these study findings, Hilbert et al. (2000:164) found that there was lack of own family support and that the lack of family support in their study was significantly correlated with esteem.

Category III: Social Circumstances Poverty and financial problems
This theme emerged almost exclusively in the initial phases of seven interview tran sc rip ts.P overty and fin an cial problems seem to be responsible for feelings o f d esp air and iso latio n .Statements such as evidenced this: "I f someone did not give me her old napkins and clothes fo r her baby, I suffer" "Hy gee baie min geld vir onderhoud." (He gives very little money for support).Hilbert et al. (2000:158) also found that family energy and especially resources are consumed in the care giving, there was need for adjustment of schedules, medical care consumed much o f the family resources, and the mothers had to abandon their jobs for the sake of the child.Hannam (1980:69) found similar results, the main burden fell on the mothers, and the fathers could at least get away to work.McCubbin (1989:102) compared single and two-parent families with handicapped children; she found that sin g le-p aren t fam ilies w ere a vulnerable group who may be in need of more support and guidance from health and social services.Failla and Jones (1991:47-48) found that to the contrary older mother groups who significantly had more income, experienced more financial problem s because o f the additional strain of having more family members, they had more children thus they found it d ifficu lt to m eet the challenge o f rearing a child with a developmental disability.

Practical constraints in caring
Most of the participants in this study hinted at one or more problems to meet the physical needs of their m entally retarded children.Physical care, which com prised a num ber o f d iffe ren t elem ents, like feeding, m obility, behaviour patterns, contraception needs, illness, stimulation, elimination, washing dressing etc.The constraints in caring were evidenced by statements such as: "Kyk hoe lyk my hande, van elke dag se (Look how my hands look like, from every day's washing)."I must watch him when he fa ll (fits) not to hurt him self " Most literature reviewed hinted at the high levels of stress related to the direct care giving (Hilbert et al, 2000:159;Hannam. 1980:67;Sveinbjamdottir & de Casterlé. 1997:45;Ip & MacKenzie, 1998:288).All studies described the child presenting difficulties with sleep, feeding, incontinence, speech problems, constant illness, behaviour problems etc.Parents of older children in the literature reviewed

Stigma
The theme of stigma was a phenomenon that ran through all participants though some described it more explicitly -the rejecting spouse / partner, in-law family and the section of the community, saw the mother and her mentally retarded child or children as blameworthy, bad and guilty.Stigma is a social construct and the person with stigma becomes not quiet hum an and in ferio r to society; the stigmatized people tend to hold the same beliefs about their identities as the rejecting groups do (Goffman, 1963:3-5).
In ferio rity surrounding the person provokes animosity from others based on the p e rs o n 's difference.C onsequently, the person becom es stigmatized by society (Herrick et al, 1997:22).This was also evident in families of mentally ill members (Rose. 1997:18;Hines-Martin, 1998:439;Ip & MacKenzie, 1998:292).Failla & Jones (1991:41) found that chronic stressors that affect families of children with special health care needs included among other things the stigma attached to these children.

Problems of development
Clear, direct statements from a significant number of participants as a problem characterized this them e.Problem s m entioned included toilet training, feeding, walking and incontinence."She is like a small baby, but she is six years old now " "...Eintlik, hy is baie stadig met alles".(Actually, he is very slow in everything)."Ek wens hy kon geloop het..." (I wish he could walk...).Joubert (1988:166) found that many parents despaired when the children progressed slowly through the different developmental stages.In the same study, parents described other problems like sleep, incontinence and constant illness as added burdens on especially the mothers.

Medical and behavioural problems
This theme clearly indicated that the mothers' experiences were more difficult w here there were behavioural problems and / or other medical conditions.In those cases, there was clearly a sense of less love and empathy, but more duty and resignation.The following statements are evidence to this effect from some participants: "Sy gooi mense dakke, mense se karre met klippe... daardie tyd voel ek, ek kan vir haar doodslaan... " (She throw s stones at people's roofs and cars; at that moment, I feel I could hit her to death)."Daar is wel due wanneer ek voel ek kan hom vir die pa gaan gee... " (Well, there are days when I feel I could give him to his father...).Hannam (1980:96-103) gave an explicit picture of difficulties parents experience when the children have medical and behavioural problem s, like rocking, screaming, spilling things, scribbling on the w all, running into the streets.Mothers of adolescent mentally retarded girls expressed fear of pregnancy and sexual molestation.

Category V: Support
In this study support of any form or lack th ere o f was the d ec isiv e factor positioning mothers along a continuum of two extremes, namely the one end of despairing isolation and that of integrated happiness.

Physical and emotional support
A few participants in this study received support from the community, particularly the church.Interestingly, there was no mention of community-or psychiatric nurse support.The community support was ex p ressed in the follow ing quotations: "The church people helped me; they gave me that washing machine... '' "I wish we had doctors coming to the houses, like those older days Hannam (1980:67) viewed family coping when there was mental retardation as m ovem ent along a continuum .He identified two extremes, the "solids", those with resource enough to cope and who can fall back on other members of the family.In addition, there are the "b rittle s " , who are sh attered and helpless, who need much support from outside agencies.Hilbert et al. (2000:159) found that poorly functioning mothers of disabled children were in poorer physical and mental health, and received less emotional support from family and friends than do well adapted mothers receive.McCubbin (1989:102) found that spousal support played a key role in moderating the stress in families with handicapped children.

Bravery and defiance to stigma
In this study, not all mothers became isolated, entrapped and tim id from stigma; some became defiant, brave and challenging to the stigma.The defiant attitude was noted in verbalizations like: "I s it my child outside here in the veranda w ith o u t w orry o f p e o p le passing...let them look...I love h im " "Ek loop oral met haar saam.Hoekom m oet ek vir haar w egsteed?" (I go everywhere with her.Why should I hide her?).These defiant mothers typically enjoyed support and love from their spouses / partners.Where there was emotional or p h y sical support, love and care, availability of the spouse or partner, shared responsibility and unconditional acceptance, the mother and her mentally retarded child or children did not feel isolated; they were integrated and happy.McCubbin (1989:101) found that there was clearly altered family relationships and among other things social isolation where families had handicapped children.Hannam (1980:69) found that the burden of caring for the mentally retarded child fell more on the mothers, for them there was no escape.The fathers could at least get aw ay to w ork, and im m erse themselves in it and forget the problems at home for a while.Support seemed to play a key role in moderating the stress, promoting coping and the effective management o f the hardship in caring for the m entally retarded children (McCubbin, 1989:102;Rose, 1997:17;M allow & Bechtel, 1999:31).

Conclusion
The findings of the study leading to this article showed that the initial caring for a mentally retarded child at home is a strain on the family, especially the mother.The respondents reported that the birth of the child and subsequent diagnosis of mental retardation were met with shock.All respondents experienced feelings of anger, frustration, fear, worry, blame, guilt, helplessness, resignation and sadness.Encouraging was the fact that this period of disorganisation passed with time.The mothers and a few fathers returned to an emotional equilibrium after a while.However, this seemed not to be the end of the mothers' feelings and responses about having a mentally retarded child.Rearing a mentally retarded child seemed to be a continuous process, and each phase of life brought its own demands and problem s resulting in traum atic em otional problem s for the parents, especially the mother.It was found in the study that m ost fathers rejected the mother and her mentally retarded child.The in-law relatives of all respondents did not want anything to do with the mothers and their children.The research found that some mothers enjoyed the support of their own relatives (own m other and sisters).The study also revealed the im portance of spousal physical and emotional support.The mothers who enjoyed support from their husbands or partners seemed to cope better and were able to m anage the hardships of caring for the m entally retarded children.
It is worth noting that the study leading to this article was conducted only in the urban area of the Katutura Township.It would be advisable to investigate this phenomenon in a rural setting in Namibia, to enable appropriate m ental health interventions to all areas of the country.

Recommendations
Based on the results and conclusions of the study, which led to this article, the follow ing reco m m en d atio n s and incorporated guidelines were made: FIGURE 1.1: Data analysis of interviews who studied the effect a p h y sically handicapped child has on fam ily 90 C urationis M arch 2007

Tabel 1. 2 :
Experiences of mothers caring for mentally retarded children in a township (N=12)

"
Ek sien sommige jong marine wat sê, Handjievol j y is my vrou, dan voel sy 93 C urationis M arch 2007 lekker en dink hulle bedoel d it" (I see some young men saying, Handjievol you are my wife, then she feels happy and think they mean it).