Survey on the Response and Adaptation of Families Born with Babies with Down Syndrome in Hong Kong
Thirty-five families with a Down syndrome child aged two years or below were studied by (1) using a standard questionnaire to gather information relating to characteristics of the families and various aspects of experience of the mother in the first two years of caring for the child; and (2) semi-structured interview on how they respond and adapt to the new Down member and (3) the impact on marital and family life of mothers. The immediate response was one of disappointment and sadness. Most reported a loss of interest in daily routines (91%), great stress (82.8%), feelings of guilt (66%) and shame (51%). The immediate needs of parents were to be communicated honestly about the child's condition in a compassionate and respectful manner preferably in the first week. At birth, about 30% of parents were not willing to look for information about Down syndrome and most (67%) were not ready to inform close family relatives or friends. The most helpful resources for them to come to terms with the child were their own spouses (54%), followed by self (23%) and parents from The Hong Kong Down Syndrome Association (20%). They needed factual information upon which they could make informed decision on all matters related to the child. Despite the great stress experienced by the families, most were able to cope effectively with the adaptive demands and had demonstrated mastery and control in their coping efforts. About 22% of parents indicated experienced family disharmony or loss of job because of the child but 77% of family indicated the importance of spouses support and that they would be able to face challenges with more strength. These strengths and resources need to be recognized and developed through working together with professionals. A wide variety of well-coordinated, easily accessible services were required to meet the needs of the child and the family. Lots of support guidance was needed in exercising their own ways of coping with the birth. The need for information and support might extend over prolonged period of time.
Keyword : Down syndrome; Families' adaptation
"My mind was blank when I heard that my child had Down syndrome. I was very upset, and didn't know what to do. I heard of 'Mongolism' before, but didn't know what exactly it was, I felt rather helpless at that time." said a mother of an infant with Down syndrome.
Most parents expect their child to be normal at birth, and when they find out that the child has Down syndrome, they are usually shocked, devastated and confused. The initial period is often very traumatic and stressful. Not only one has to deal with the changing emotions inside, but also the psychosocial reactions of family members and friends. The importance of initial support in positive adjustment to the birth a special child has been well documented.1-4 This initial support does not only help parents deal with their emotions, it may also enhance the parent-child relationship in terms of bonding and mutual interaction and provides a stronger base for strengthened coping capacities and better adjustment.
According to a local study, the minimal incidence of Down syndrome in Hong Kong was estimated to be 1 in 767 livebirths.5 With an average number of 69,000 newborns each year, about 90 children with Down syndrome will be born each year. How do families deal with the birth of an infant with Down syndrome? Do they get the support they need? What services are available and how can they be improved further? These questions are crucial in helping us to understand what is needed in the Down population. The present study examines (1) the experience of families in bringing up their children with Down syndrome, (2) how the needs of families were met and (3) gaps of existing services in meeting the needs of persons with Down syndrome and their families. Though parental views on services they received were drawn, it must be noted that the survey does not intend to be a formal evaluation of services, and should not be regarded as such.
Methods and material
The study subjects were families having children with Down syndrome whom were less than two years of age. The present sample was collected through the Hong Kong Down Syndrome Association. Fifty-two family members who met the criteria were invited to participate in the survey. Thirty-five families agreed to participate in the study.
To collect both quantitative and qualitative information, two main methods of enquiry were used. They were (a) questionnaire and (b) interviews with parents of the child with Down syndrome.
A. The questionnaire
A questionnaire was constructed to gather information relating to the characteristics of the families and various aspects of the experience of the mother in the first two years of caring for the child. These aspects included the parents' previous knowledge about Down syndrome, the way the parents were told, their emotional responses towards the birth of the child, their difficulties in caring of the child, their changes in the adjustment process, availability of support, and their responses towards the professional services they had received. In addition, part of the General Health Questionnaire focussing on mental health, and the Chinese version of the Kansas Marital Satisfaction Scale were also included.
While most of questions are forced-choice ones, open-ended questions were used to gather information on real life events and experiences of responds that forced-choice questions would not be appropriate due to the limitations of alternative choices. In the forced-choice questions, checklist and Likert-style formats and contingency questions were used.
The questionnaire designed by the research group was piloted tested in three randomly selected cases. After examining respondents' answers, some questions were furthered further reworded for clarity purposes, the order of questions were also rearranged to reflect consistent flow. The revised version of the questionnaire was administered to another 3 randomly selected cases. The whole questionnaire was finalized after the items were evaluated on their allowance for variation, clarity of meaning, redundancy, and non-response.
The questionnaire was administered by a research assistant who had received training from the chief investigators in the purpose of the questionnaire, questioning skills and administering the questionnaire. Special attention was paid to enhance the research assistants' sensitivity towards possible parental emotions and to conduct the questionnaire in a respectful manner.
B. The interview
Ten families were randomly selected from the sample for the interview. The interviews were conducted by a psychologist who had over ten years' direct work experience with mentally handicapped individuals and their families. The interviews were tape-recorded and later transcribed by the research assistant. Interview with broad guidelines was used. This method does not limit the responses of the interviewees to a 'forced choice', and brings the perspective of the interviewees. As the survey is concerned with how the needs of a family with a Down member were met, interview guidelines were formulated around the experience a mother has in looking after her child with Down syndrome. They included the 'hearing the news' experience, reactions to the diagnosis, coming to term with it, and their experience in receiving various services to help themselves and their child, and the impact on the mother.
Data derived from the questionnaires were analysed in terms of percentages. As for data derived from interviews, the method of inductive analysis was used. The data were transcribed and coded. The researcher attended to the differences and similarities across the cases. Relevant points were also noted and compiled for further analysis. There were categorized and sorted along the themes of 'receiving the news', 'previous knowledge of Down syndrome', 'initial reactions and coming to terms with the child', 'help from professional services' and 'effects on the mother'.
A. Characteristics of the family
1. Age of the mother
The age of the mothers at the birth of the child ranged between 21 and 42 years with an average of 31. 5.7% (2 cases) of the mothers were below 25 years old, 37.1% (13 cases) were between 26 and 30 years old, 45.7% (16 cases) were between 31 and 35 years old and 11.5% (4 cases) were between 36 and 42 years of age. None of the mothers had given birth to a child with Down syndrome and none had amniocentesis before the birth of the child.
2. Education level
Majority of the mothers (48%) (17 cases) had attained the upper secondary education level and another 11 % (4 cases) had an education level of lower secondary. 26% (9 cases) had a primary or below primary education level while 6% (2 cases) had post-secondary education and 9% (3 cases) had university or above education.
51% (18 cases) of the mothers were having full time employment, 46% (16 cases) were house wives and 3% (1 case) had part-time employment. As for the fathers, 97% (34 cases) were fully employed, 3% (1 case) was unemployed.
4. Income source and level
As 97% of the fathers and 51% of the mothers were fully employed, salary was the major source of income for the families. On family was relying on previous savings. In general, monthly family income ranged from $7,000 to $90,000 with an average of $29,000. One family had a monthly income of over $100,000.
Only 25.7% (9 cases) of the mothers reported they had a religion whereas 74.3% (26 cases) claimed they did not have a religion. Buddhist accounted for 60% of the religion claimed and the rest (40%) were Christianity. While all those who have a religion reported 'blessing seeking' behaviours, 39% of those who do not have a religion also reported 'blessing seeking' behaviours by going to the Chinese temples.
6. Residential conditions
48.6% (17 cases) of families owned their homes and the rest lived in public housing facilities.
7. Family size
42.9% (15 families) of families were nuclear families with one child, 42.9% (15 families) had two children and 11.6% (4 families) had three or more children.
8. Marital status
97.1% (34 cases) of the mothers were married while 2.9% (1 case) was divorced.
9. Geographical distribution of families in the sample
25.7% (9 cases) of the families were living in Hong Kong island, 28.6% (10 cases) were living in Kowloon and 43% (16 cases) were from the New Territories.
B. Type of hospital in which the child was born
45.7% (16 cases) of the children were born in public hospitals while 54.3% (19 cases) were born in private hospitals.
C. Previous knowledge about Down syndrome
69% (24 cases) of the mothers indicated that they had heard of Down syndrome before the birth of the child while 31.4% (11 cases) said that they had not. Of those who had heard of the syndrome, 95.6% (23 cases) indicated that they didn't know what it was.
D. When was the news broken?
63% (22 cases) were informed of the diagnosis within a week of the child's birth, while the rest were informed within a month but more than a week. Two mothers complained about a delay in learning about the diagnosis.
E. How was the news broken?
80% (28 cases) reported it was the paediatrician who told her the diagnosis and 94% expected a doctor to explain what Down syndrome is to them. 43% (15 cases) of the mother were impressed at the doctors' braking the news, 23% (8 cases) were neutral and 31% (11 cases) were not impressed. Those who were impressed used words like 'patient and supportive', 'comforting', 'realistic but not negative', 'listened to me', 'answered my queries and explained patiently', 'was sincere', 'had a positive view of my child's future' and 'willing to offer help' when they talked about their impression of the doctor. Those who were unimpressed reported 'he told me the fact without comfort and care', 'without consideration', 'very discouraging and unsympathetic', 'did not explain to me', 'indirectly informed me by asking me to have a blood test', 'did not tell me at once which me suffer for weeks', 'was cold', 'just told me there was something wrong with my baby', and 'telling with no respect'.
Of the 15 families who were impressed at the doctors' telling the news, 60% (9 cases) were from public hospitals and 40% (6 cases) were from private hospitals. Of the 12 cases who were not impressed, 33.3% (4 cases) were from public hospitals and 66.7% (8 cases) were from private hospitals.
On the question of whether family members were present when the news were broken, 63% (22 cases) indicated presence of spouses, and of those whose spouse were not present, 38% (5 cases) of them did not expected their spouse's presence at hearing the news. 23% (3 cases) of the mothers did not have an expectation on presence of family members.
F. Initial psychological reactions
All mothers indicated disappointment and sadness when they learnt their child had Down syndrome. 91.4% (32 cases) reported a loss of interest in daily routines, 82.8% (29 cases) reported great stress, 65.7% (23 cases) reported feelings of guilt, and 51.4% (18%) feelings of shame and not wanting to meet people.
G. Coming to terms with the birth of a baby with Down syndrome
At birth, 68.6% (24 cases) of the mothers indicated they did not mind close family relatives asking about the baby, while 22.8% (8 cases) had problems with it. At the time of survey, only 2.9% (1 case) still had problems in telling the diagnosis to family relatives. For those having initial problems, it took one to six months before they could overcome it.
On telling the news to a close friend, 37.1% (13 cases) indicated they did not mind doing that at the child's birth, whereas 45.7% (16 cases) indicated problems with it. At the time of survey, 71.4% (25 cases) indicated they had overcome the problem and only 17.1% (6 cases) still had problems. For those who had problems at the beginning, majority took one to six months to come to term with it.
On the question of whether they mind being asked by work colleagues about their child, 38.4% (5 cases) indicated that they did not mind whereas 53.8% (7 cases) indicated they did at birth. At the time of the survey, 53.8% (7 cases) indicated they did not mind, and 46.2% (6 cases) said they did.
On whether mot rs mind taking their baby out of the home, 45.7% (16 cases) indicated they did not mind while 42.8% (15 cases) indicated they did at birth. At the time of the survey 88.6% (31 cases) indicated they did not mind taking their baby outside, only 5.7% (2 cases) indicated they did.
On willingness to look for information about Down syndrome, 23% (8 cases) indicated negatively and 71.4% (25 cases) indicated positively at the child's birth. At the time of the survey, only 14.3% (5 cases) indicated unwillingness, 85.7% (30 cases) indicated willingness. On whether the mother would like to play with the child when she was not tied up with other things, 82.8% (29 cases) indicated positively at the beginning while 11.5% (4 cases) indicated negatively at the child's birth. At the time of survey, 97.2% (34 cases) indicated positively, 2.9% (1 case) indicated negatively.
On willingness to buy toys for the child, 85.8% (30 cases) indicated positively and 5.7% (2 cases) indicated negatively at the child's birth. At the time of the interview, 91.5% (32 cases) indicated positively, and 5.7% (2 cases) negatively. Among those who were willing to buy toys at the beginning, 60% had progressed from 'willing' to 'very willing'.
On whether the mothers were happy at seeing the baby, 62.9% (22 cases) indicated negatively and 22.9% (8 cases) indicated positively at the birth of the child. At the time of the survey, 91.4% (32 cases) indicated positively and only 2.9% (1 case) indicated negatively.
H. Family resources
On the question of who is most helpful in the process of coming to terms with the child, the category most indicated by mothers was 'spouse' (54.3%, 19 cases), followed by 'self' (22.9%, 8 cases). The ranking for other persons were parents at Down Syndrome Association (20%, 7 cases), mother-in-laws (17.1%, 6 cases), mothers, doctors and non-governmental organization social workers (14.3%, 5 cases each), father-in-law (11.4%, 4 cases), father, siblings, siblings-in-laws, physiotherapists, occupational therapists, medical social workers (8.6%, 3 cases each).
On who gave the respondent a sense of pressure in the process of coming to terms with the child, 17.1% (6 cases) reported self, 8.6% (3 cases) mother-in-law, 2.9% (1 case) spouse, 2.9% (1 case) mother, 2.9% (1 case) father-in-law and 2.9% (1 case) sibling.
In the present survey, 91.4% of the mothers expressed they would have opted for abortion had they known their child has Down syndrome before birth. In this regard, some mothers expressed strong criticism against their request for screening being discouraged and turned down by their obstetricians.
I. Health condition of the child
18 cases (51.4%) of the children had heart problems - 2 (5.7%) children had very serious congenital heart disease, while the other 4 (11.4%) and 12 (34.3%) were serious and not serious respectively.
For visual problems, 8.6% (3 cases) reported serious eye sight problem, 25.8% (9 cases) reported slight eye problems but not serious, 42.9% (15 cases) reported no eye sight problem while 22.9% (8 cases) were unsure.
On intestinal problems, 2.9% (1 case) reported very serious problem, 2.9% serious problem, 14.3% (5 cases) slight problems and 77.1% (27 cases) reported no problems on this aspect.
On sucking problems, 8.6% (3 cases) reported very serious problems, 17.1% (6 cases) serious problems, 14.3% (5 cases) slight problem and 60% (21 cases) had no problems on sucking.
In general 74.3% (26 cases) of the mothers considered their children's health to be good. 22.9% (8 cases) considered them to be of average health and 2.9% (1 cases) was considered by the mother to be in poor health. On the handling of the child, 25.7% (9 cases) reported definite difficulties in dealing with the general health of the child, 28.6% (10 cases) indicated slight difficulties in this area, while 45.7% (16 cases) indicated no problem in this area.
With respect to feeding, 11.4% (4 cases) indicated they had much difficulties, 11.4% (4 cases) definite difficulties, 22.9% (8 cases) slight difficulties and 54.3% (19 cases) no problem at all.
In regard to emotion problems, 2.9% (1 case) indicated much difficulties, 8.6% (3 cases) definite difficulties, 34.3% (12 cases) slight difficulties and 54.3% (10 cases) had no problem at all.
As for the sleep handling, 5.7% (2 cases) indicated definite problems, 28.6% (10 cases) had slight problems while the majority (65.7% or 23 cases) had no problems in this area.
J. Effects on the mother
1. Personal time
80% (28 cases) of the mothers indicated agreement on the lack of personal time as a result of looking after the newborn. 20% (7 cases) did not agree. Likewise, 60% (21 cases) indicated agreement on the lack of time for contacts with friends and relatives while 40% (14 cases) disagreed.
2. Family disharmony
23% (8 cases) of the mothers indicated family disharmony has resulted from the child, whereas 65.7% (23 cases) did not agree to that view. Likewise, 17.1% (6 cases) indicated spousal disharmony had resulted from the child while the rest (71.4%, 25 cases) did not think so.
3. Loss of job
23% (8 cases) indicated loss of job due to the birth of the child, whereas 28.5% (10 cases) disagreed to that view. The rest were housewife previously, and therefore did not find the question applicable.
4. Realising the importance of spousal support
77% (27 cases) of the mothers agreed that they realised the importance of spousal support because of the child, and 11.5% (4 cases) did not think so.
5. Strengthened will-power
77% (27 cases) of the mothers agreed that their willpower were strengthened because of the birth of the child and 5.7% (2 cases) did not think so.
6. Increased courage when faced with difficulties
77% (27 cases) of the mothers agreed that they had increased courage when faced with difficulties because of the child while 11.4% (4 cases) disgreed to it.
7. New friendship
86% (30 cases) of the mothers agreed that they had established new friendship as result of the birth of the child, and 2.9% (1 case) disagreed to it.
K. Marriage and spousal relationship
85.7% (30 cases) of the mothers indicated satisfaction with the marriage, 2.9% (1 case) indicated average on the marriage and 8.6% (3 cases) indicated dissatisfaction about the marriage. As for satisfaction level about the spouse, 85.7% (30 cases) indicated satisfaction on it and 8.6% (3 cases) indicated dissatisfaction. On spousal relationship, 85.7% (30 cases) indicated satisfaction and 5.7% (2 cases) indicated dissatisfaction.
L. Mental health
Of the twelve items used in the mental health measure of the General Health Questionnaire, item 'felt continuous under stress' was reported to be 'more than usual' by 20% (7 cases), item 'feeling sad' was rated to be 'more than usual' by 8.6% (3 cases), item 'worried about not enough sleep' was rated by 5.7% (2 cases) to be 'more than usual' and for the rest of the items, only 2.9% (1 case) rated 'more than usual'.
There were several limitations in this survey. The foremost one was related to the sample. As the subjects in the survey was from the Hong Kong Down Syndrome Association, and all the families would be receiving help and support. Secondly the sample only consisted of 35 families out of 52 families contacted, the sample may be biased that only better adapted mothers agreed to participate in the study. However, every year about 70 babies with Down syndrome will be born and the sample would represent about a quarter of all the cases delivered in a two years period in the whole territory. Also the demographic characteristics of the families and the general physical health status of the Down children are quite representative of general Down population.5 Thirdly, as the language used in the interviews was Cantonese, the meanings expressed by the participants might not be fully expressed when translated into English.
Knowledge about Down syndrome
Although 68.7% of the mothers had heard about Down syndrome before the birth of their babies with Down syndrome, majority had very little knowledge about the syndrome. Most mothers would equate Down syndrome to mental retardation and were not aware of the other possible physical and sensory conditions associated with it. As this knowledge is vital in early identification and intervention, adequate medical information must be made available to parents of newborn with Down syndrome.
When was the news broken?
The present findings that 62.9% of families learnt of the child's condition within the first week and that most mothers would like to be told of the diagnosis as early as possible even when the diagnosis is in doubt are consistent with previous studies.2,6 Higher parental satisfaction was reported for those who were told sooner than later.6,7 Findings of the present survey also concur with Gath's studies8 that the degree of parental dissatisfaction increased with the time lapse between the birth and the definitive diagnosis being made to parents. The reasons to support early telling are that parents do not want to be 'cheated' in the first place, and they find it difficult to explain to relatives and friends after saying all was well with the child at birth. Evasions, delays and prolonged waiting for results are reasons for parental dissatisfaction. Present results indicated that parents would be quite dissatisfied when they were not informed of the diagnosis as early as possible even when the diagnosis were tentative and required tests to confirm them. Rather, they were appreciative of the seriousness of the doctors' concern for their child and the necessary steps taken to come a definite answer. Also, a previous concern that early telling may lead to rejection of the infant was not supported by studies.6,7,9 The trend of early telling in the past decades did not result in an increase in reports of parental rejection.
How was the news broken
How the news is broken has been the subject of many past studies. It is also an area that has received much parental criticism. How parents are told about the child's condition has profound effects on them. It can affect their attitude and expectations towards the child, their adjustment to the situation and may also have significant influence on the early treatment of the child.4 Studies have shown that parents of children with disabilities want to be told in a respectful and sensitive manner.10 They find it helpful to receive the news from a professional who communicates empathy, openness, and a positive yet realistic outlook. In the current survey, majority had the news broken by a doctor and 42.9% of the mothers were impressed at the doctor's breaking of the news. It appears that most parents have high expectations on the way the news was brought to them. They do need more than just factual information of Down syndrome. Similar to other studies, common criticisms as indicated by the inductive analysis of the interviews were lack of information on how the parents could the help the child, bluntness and insensitivity of the doctor. Positive comments from parents included supportive and caring attitude, patience in explaining the syndrome and the implications, encouraging words, realistic but not negative views of the child's future, respect and sensitivity to privacy.
Initial in formation needs
As most mothers' knowledge about Down syndrome were very limited. Keeping parents informed with the medical and health risks are important and should be done in later sessions after the initial informing as parent may not be ready for too much information at the time. Awareness of these potential problems may draw parental attention towards early identification and intervention. Moreover, making information available to parents is not enough. Rather, linking the family with comprehensive assessment and treatment services in a coordinated fashion is essential if families are to be helped in a practical manner.
Initial psychological reactions
Many researches had investigated into mothers' initial reactions to the birth of a handicapped child with a view to help them adjust better. Finding out one's own child has Down syndrome is often traumatic for parents. All mothers in the present study reported disappointment and sadness at the discovery. Over 90% experienced lost of interest in daily routines and 82% reported tremendous stress. Several had thoughts of abandoning or hiding the child, wished the child did not survive initially. However, upon second thoughts, they had chosen to keep the child and bring him/her up with her best efforts. Soon after the diagnosis, parents would need someone who will listen to them and help them express and clarify their feelings. It is often a period of emotional dis-organisation, and the availability of high quality support is of paramount importance.4 Not only the availability of support is important in reducing stress, it will also reassure parents of the support and thus encourage them to obtain it before other severe crises strike. Parents who have access these supports reported fewer problems in the adjustment process.11
Health condition of the child
Despite 74.3% of the respondents considered their child's health to be good, over half of the children were having heart, visual or other problems. Parents expressed difficulties of frequent visits to doctors and hospitals as these visits were usually very time consuming and potentially costly. The presence of health problems is a source of great emotional, physical and financial strains upon the family. Services such as medical and nursing care, respite care, home help services and additional financial assistance could relieve family members of the pressure arise from these difficulties.
Supports in the adaptive process
The survey has indicated that spousal support and self-help were the predominant assisting factors for the mother in coming to terms with the birth followed by support from other parents with similar experience. This is consistent with previous finding that internal coping strategies as opposed to seeking help from other people were used in dealing with stress by a high proportion of parents.22 Support from spouse and within family is thus of vital importance. Studies have shown most parents find meeting with other parents who have similar children the most valuable resources. Meeting with other parents serve multiple purposes of social and support - they are able to find out that their feelings are just normal and that they are going to feel some grief, exchanging information about helpful services and professionals, providing parental participation and improving parent-child interactions.12,13 However, not all parents are ready for such contacts at diagnosis, some are not ready until several months or years after the diagnosis. Thus, it is important to reassure parents of the availability of such support and respect the pace of parental and individual adjustment.
Inductive analysis of the interviews also indicated some mothers found it helpful when they found that the child was not that incapable. Similar findings were reported in Shepperdson's study on the growing experience of Down syndrome and their family. She reported 'mothers frequently mentioned that the beginning of an upward change in attitudes to the child came when they found the child was doing more than they had expected'.14 It is also quite possible that the process of coming to terms involves a lowering of parental expectations of the child's behaviour and the progress the child is making, so that changes are required on both sides. Adequate support from professionals and other parents are important to enhance and sustain such attitude.
Family needs vary across the adjustment period in caring for a child with Down syndrome. The need for support and information is probably more immediate around the time of diagnosis, while care-giving skills and participation in early training and stimulation for child will follow. Also there is variability across families in the relative importance of certain needs. Thus sensitivity to the unique situations of each family is important in the helping process.
Coming to terms with the child
Coming to terms with the birth of a child with special needs is not an 'once and for all' experience. Studies have shown individuals and families vary in the time span they take to develop a sense of 'able to cope' with the event.4,13 A wide range of emotions including shock, denial, grief, guilt, sorrow, fear, sadness, confusion, ambivalence, uncertainty, and hope were reported, and some of these emotions are experienced in some form over time.15,16 Periodic or chronic sorrow can still be experienced by some parents even they have seemed to be relatively well adjusted.17,18 However, this is not to suggest that these individuals and families are incapacitated by the event. Adaptation can be an extensive process for some individuals and families, and should not be regarded as pathological.
Items on willingness to tell others about the child, playing with the child and looking for information about Down syndrome were chosen to reflect maternal acceptance behaviours towards the child. There was considerable change in maternal behaviour in relation to the child at birth of the child and at the time of the survey. There was an overall increase in the percentage of mothers showing behaviour that were considered coming to terms with the birth of a child with Down syndrome. For those mothers who initially were not receptive with the birth of the child, 90% of them reported it took them one to twelve months to adjust to accepting the child. This indicated that most mothers in this sample were able to accept the child despite initial ambivalence and in some cases, rejection. It must be noted that the time needed for coming to terms varies with individual and families, there was no suggestion that mothers who takes more than 12 months to display accepting behaviour are problematic. This only indicates that all the families will need long term continual support.
Effects on the mother
Despite the increased demands a child with Down syndrome bring to a family, recent studies have not just focused on the negative impact on the family but also positive consequences for the family. Many families have reported an appreciation of the positive meaning of the experience of having handicapped child and the strength they have derived from it.12 To understand the impact on the mother, respondents in the present study were asked to respond to questions on their personal life in general, family and marital relationships and their status of mental health. Regarding personal time, 80% indicated agreement to 'lack of personal time' as a result of looking after the newborn child, and 60% agreed that they did not have time for friends and relatives. A similar study by Shek & Tsang also found 44.7% of the parents expressed great stress in relation to their lack of own time.22 Assuming meetings with friends and relatives constitute part of an individual's social life, the social life of mothers of Down syndrome infant was somewhat affected. However, most parents were aware that this was more a consequence of having to look after any child, able or disabled; and therefore not attribute to the presence of the disability. This is consistent with the findings of Can who reported though mothers of Down syndrome babies went out less when compared with those without Down syndrome babies, only a small proportion (15-20%) of the mothers attributed their difficulty of going out to the presence of the child with Down syndrome, and about 75% of the mothers did not agree with the suggestion that the child might have made them lonely.19 In fact, 85.7% of the respondents in the present survey agreed that they made new friends after the birth of the child, probably due to support group activities.
As for the impact on mothers' employment, 22.9% indicated the reason for not joining the labour force was related to the birth of the child with Down syndrome, whereas 28.5% disagreed to that. This seemed to suggest that some mothers' jobs were affected by the child while others were not, probably depending on the kind of employment, and family resources available. 51% of the mothers in the present sample were engaged in full time office work such as clerks and office assistants. It has also been reported that the impact of mothers' employment was likely on the type of employment and hours of work rather than on whether or not the mothers were working at all.14
The once held belief that family disharmony and spousal relationship would be negatively affected by the presence of a child with disability, in this case Down syndrome, was not fully supported by the present findings. Only 22.9% of the mothers indicated family disharmony, and 17.1% spousal disharmony resulted from the child. Over 65% (65.7% for family disharmony and 7 1.4% for spousal disharmony) indicated disagreement on the relationship between the two. In fact, 77% of the mothers agreed that they realize the importance of spousal support because of the child. These findings were consistent with Shepperdson's finding that 32% of the couples in her study had reported closer relationship and 28% had no change in their spousal relationship.14
The effect of having a Down syndrome on maniage has once been considered as rather negative. Recent studies little difference was seen between the ratings of marriage by mothers with and without Down syndrome.19 Findings of the present survey indicated 86.7% of the mothers indicated satisfaction with their maniage and spousal relationship. Only 8.7% indicated dissatisfaction about maniage and 5.7% on dissatisfied spousal relationship. This was consistent with the study by Byrne who reported only 7% of the marriage were rated as poor or very poor20 and that of the study by Shek & Tsang that most parents were satisfied with their marital relationship.22 It was also found that a higher level of marital relationship was associated with a higher level of internal coping, external coping and omnibus coping; and higher marital satisfaction together with a higher sense of mastery tended to have a lower level of psychiatric morbidity and higher sense of purpose in life.22 The fear of grossly negative effects of a child with Down syndrome on marital relationship seemed unwarranted.
As the birth of a child with Down syndrome would require additional parental efforts to adjust to it, mental stress of mothers were expected to be higher. Present survey showed only 20% of the respondents reported a more than usual feeling of continuous stress. 8.6% reported to be feeling sad and more than they usually did, and 5.7% reported more episodes of not getting enough sleep due to worries. Consistent with other studies, mothers with handicapped children have commonly been found to have higher scores on stress scales21,22 however, maternal stress had been found to be related to neuroticism scores of the mother, health problems and behaviour in the child than the impaired intellectual functioning of the child, which was usually present in children with Down syndrome.
On the whole, there were both positive and negative effects on the mothers. There was a decrease in personal time and time spent with friends and relatives. However, most parents in the present survey did not attribute these restrictions to the disability of the child but the logical consequences of having to look after a child. Some mothers' employment were affected while others were not, depending on the nature of the employment and availability of other family resources. In common with many other studies of families with Down syndrome children, there was little evidence that a child with Down syndrome would be more likely than any other to lead to family disharmony or marital discord if previous marital relationships had been positive, though it might a threat to marital relationships that were already problematic. Rather many mothers in the present survey reported stronger spousal relationships and better patience and endurance. Though maternal mental health in general did not seem to be problematic, there was consistent report of continued stress experience by mothers of present survey.
The findings are consistent with previous study of Shek & Tsang 1993. 44.7% of the parents expressed great stress in relation to their lack of own time, about 40% in taking care of the mentally handicapped child in relation to poor concentration and defiant behaviour of the child. Most of the parents were satisfied with their marital relationship. With regard to coping strategies, internal coping strategies as opposed to seeking help from other people were used in dealing with stress by a high proportion of respondents. About 23.8% were suspected to have psychiatric morbidity displaying symptoms of anxiety and inadequate coping. A higher level of marital relationship was associated with a higher level of internal coping, external coping and omnibus coping; and a higher marital satisfaction together with a higher sense of mastery tended to have a lower level of psychiatric morbidity and higher sense of purpose in life.
The diagnosis of any form of disability for a new born child is often devastating for the parents. Parents usually experience tremendous stress and emotional turmoil in dealing with it. However, this does not mean these families will be totally torn apart. Instead, many families are capable of coping effectively with the adaptive demands associated with the child's disability, and have demonstrated necessary mastery and control in their coping efforts, provided that their strengths and resources are recognised and developed through working together with professionals, and appropriate and well co-ordinated services are easily accessible and available.
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