What does research tell us about families with
children with Down syndrome?
There have been a number of useful studies of the experiences of families with children
with Down syndrome in recent years, particularly in Australia,[1-7]
the USA[8-17] and the UK.[18-32]
These studies have moved on from simply looking for negative effects and have taken
more sophisticated approaches to involving families in their studies and trying
to capture a realistic view of the experiences of families.
The range and types of research
The largest and most detailed study is the longitudinal study of families with children
with Down syndrome which has been ongoing in Manchester, UK, since 1973.[18-24] This research programme was established by Cliff
Cunningham, and he and his colleagues are still working with many of the families
and the young adults with Down syndrome to continue to document their experiences.
Their work has looked at both the influence of caring for a child with Down syndrome
on the life of the family and the influence of family environments and parenting
strategies on the development and progress of the child with Down syndrome. The
Manchester studies have mainly investigated the variation in family experiences
within a large group of families of children with Down syndrome. They have been
able to ask if some families fare better than others and, if so, why? Importantly,
they have also been able to see if families continue to do well or to experience
stress over time, as they looked at families experiences at two points five years
Other studies have compared the experiences of families with a child with Down syndrome
with the experiences of other families with similar numbers of children and similar
family characteristics, but not a child with a disability.[e.g.
These studies are important as they allow us to identify the possible differences
associated with caring for a child with Down syndrome. Parenting is demanding and
many families of young children find parenting stressful at times is it actually
any different if one child has Down syndrome and, if so, how?
Research with families of children with Down syndrome
- Most (70%) of families adapt and lead ordinary family lives.
- Most families report benefits of having a child with Down syndrome for the whole
- Marriage breakdown is no more frequent than for the rest of the population it
may even be less frequent.
- Brothers and sisters do not have more problems than in other families and are
likely to be more caring.
- Resilient families tend to use practical coping strategies they seek out information
and services. They join parent support groups.
- Resilient families develop a supportive emotional climate and encourage open communication
between family members.
- Ageing parents of adults with Down syndrome still living at home have better physical
health and life satisfaction than typical ageing parents.
- Some families (30%) are vulnerable and experience considerable stress. In these
families, everyone may be affected by practical, emotional and behavioural difficulties
the child with Down syndrome, brothers and sisters and parents.
- Vulnerable families can usually be identified in the first years of a childs life
and will benefit from specific support from relatives, parent support groups and
Some studies have focused on the experience of brothers and sisters of children
with Down syndrome.[1-4] Most studies have assessed
the experience of mothers only but some have included fathers[27,28] and found that parents do not always have the same
views of their families and the issues which cause stress! The needs of fathers
have received much less attention than the needs of mothers. A few studies have
considered the needs of grandparents and the role that grandparents can play in
supporting families or increasing family stress.
Almost all research studies have used questionnaires completed by parents as their
main method of data collection, though a few have used more open interview techniques
to collect information from parents.[4,7,13,33]
Most research has focused on the childhood years and most studies have visited just
once and, therefore, obtained a snapshot view of life at that time. One group of
researchers in the US have been following the experiences of families with adult
children with Down syndrome still living at home with increasingly ageing parents.[9-12] This study has highlighted many positive outcomes
and we are beginning to be able to build a life span perspective of families caring
for individuals with Down syndrome.
The majority of researchers have only worked with families from Western or European
cultures, in the US, Australia and the UK. This means that the findings cannot be
assumed to reflect the experiences of families with different cultural backgrounds.
A few studies have looked at Chinese families
and Latino families but published information on experiences in cultures other than
western ones is limited.[see 35,36]
We would expect some issues to be similar and some different, based on the current
state of knowledge.
The main findings are positive
Most families do well. The main finding of research studies is
normality the majority of families with children with Down syndrome lead ordinary
lives. This does not mean that families do not have additional demands and challenges
to cope with. It means that at least 65-70% of families find the resources to meet
the additional needs of their child or adult with Down syndrome and lead happy and
ordinary family lives themselves.[18,19]
There are no more marriage breakdowns than in the rest of the population (and some
indication that breakdown is less likely).
There is no evidence of ill effects for brothers and sisters in these families and
both parents and brothers and sisters report benefits as well as extra demands.[29-31] As a group, families with children and adults
with Down syndrome report less stress than families with children with similar levels
of intellectual disabilities from other causes.[see 37,8,25] There may be several reasons
for this, such as early diagnosis and support, information which helps parents to
predict the future, the sociable and warm nature of most children and adults with
Down syndrome and fewer behaviour problems than in the comparison groups.
There is some evidence that ageing parents who have adults with Down syndrome still
living at home have better physical health and life satisfaction than ageing adults
in the typical population.[9-12]
Where researchers have had comparison groups of families without a child with a
disability, they find few differences on measures of resilience or family functioning,[4-6] even though mothers of children with Down syndrome
report more parenting demands and more stresses.[16,25] This supports the view that most parents cope with
the extra demands and stresses effectively and that the family does not suffer.
Some families have a hard time. If 65-70% of families are doing
fine, there are 30-35% of families who are showing signs of considerable stress
or distress, for a variety of reasons.[18,19]
In these families, brothers, sisters and the child with Down syndrome are more likely
to show behaviour difficulties. Parents are more likely to be struggling to cope
and experiencing depression or health problems. All family relationships will be
strained and family life affected. Some of the reasons that lead to families having
a hard time have been identified and this information may be able to help parents,
extended families and services to pinpoint their needs and ways to improve their
situation if life is difficult to manage at present.
As the reader will see, almost all the factors that make families with children
with Down syndrome vulnerable will make any family vulnerable and parenting more
difficult. The same characteristics lead to family and child difficulties in the
rest of the population.
Family strengths and weaknesses. Researchers have identified at
least some of the factors that help families to cope well and some of the factors
that make families vulnerable to stress.[38-40]
These can be described as strengths factors which increase resilience, and weaknesses
factors which increase vulnerability. Resilience is the term used to describe
the family's ability to cope in the face of life stresses. Resilience and vulnerability
factors are discussed in the next section.
This information is particularly important for new families, those with preschool
children and those who provide services and support in the early years, as the evidence
from the Manchester studies and others suggest that the most vulnerable families
will experience difficulties from the time the news is broken and, without help,
will continue to experience difficulties affecting all members of the family.[19,20]
Resilience and vulnerability
The following section presents an overview of the factors found to influence the
resilience of families from the available published research, in order to try to
interpret what is known and to draw out the implications for families and for service
providers. The main findings are illustrated in diagrammatic form in
Figure 2 to try to help the reader to co-ordinate the findings and to see
how they relate to a family's experience. Putting them onto one diagram allows us
to see the full picture. It is important to note that strengths and weaknesses are
likely to be additive. Families with several vulnerability factors will be worse
off than families with only one, and areas of strength may be able to compensate
for areas of vulnerability. It is important to bear this in mind as we discuss each
possible strength or weakness. On its own, one weakness may not put a family at
risk, as other factors in the life of the family or support from services may compensate.
Figure 2. Influences on family resilience or vulnerability
- from research findings
+ indicates a factor likely to increase resilience
- indicates a factor likely to increase vulnerability
It is also important to note that research studies have not assessed all the possible
influences on families resilience or sources of stress. For example, the unconditional
love that almost all parents feel for their child, and the way in which family members
value the child is a major source of resilience. Advocating for their children's
needs leads many parents to report that they have discovered new strengths, made
new and lasting friendships and that they have become more involved in their communities.
These all have benefits for their lives, and increase their resilience in the face
of other life events that are part of the life experience of most people. Parents
often report that dealing with service providers is a major source of stress: these
issues have not been well documented in the published research studies.
Research studies also report main differences between groups of families and they
tend to conceal the range of individual differences within their group data. The
research then leads to generalisations about families with a child with a disability.
These may be helpful to alert us to important issues, but the reader is encouraged
to remember that all families are different, with their own characteristics and
ways of supporting each other, and that all families change and develop over time.
What parents of teenagers with Down syndrome actually say about their lives
"Though we were devastated when he was born, he was such a happy child, and relatively
little trouble, apart from illness, that we soon realised we wouldn't be without
him. Though there has been stressful and worrying times (notably age 10-12) he has
added another dimension to our lives, and I'm sure we met a lot of people, done
a lot of things that we wouldn't have done otherwise. He is popular, friendly and
non-judgemental and all in all the positive effects outweigh the bad."
"Very loving, trusting and happy boy enjoys life and is very sociable. Cannot
always do things we would like to do, he takes up a lot of time. Unable to work
full-time in my career so have to accept a job which accommodates his needs."
"Sometimes we have been restricted in our activities. When my sons were younger
there was a certain amount of embarrassment when their peer groups would make derogatory
remarks to them."
46 families took part in a survey, part of which covered effects on family life,
brothers and sisters, and the need for services.[30,31] A summary of the findings and the full range of
their verbatim views is included as an Appendix.
The individual characteristics of parents
Personalities. Certain personality characteristics seem to make
individuals more vulnerable when faced with demanding life events. Individuals who
score highly on measures of neuroticism or anxiety seem to be less able to cope
in a positive and effective manner. Individuals with low self-esteem or self-confidence
will be less likely to believe that they have the ability to cope. Individuals who
are more extraverted, and those that have a strong sense of being in control of
their lives (internal locus of control), manage stressful life events more effectively
than individuals who are more introverted and tend to feel that what happens to
them is outside their control (external locus of control). Personality characteristics
may affect the different coping strategies that are used by parents. For example,
at a time when a parent is anxious and has low self-esteem, he or she is unlikely
to seek out social support or to develop active, problem solving strategies.
Coping strategies. Coping strategies are the ways in which individuals
deal with stressful situations. In the family research, they have been divided into
emotion focused and practically focused strategies. In the main, practical coping
strategies seem to be positive and linked with resilience. These may be described
as active problem solving strategies which include seeking information about Down
syndrome and about services, benefits and support available to the family, meeting
other parents and joining a support group, and making full use of family and community
social support networks. Emotion focused strategies include wishful thinking (maybe
things will get better), passive acceptance (this is my lot in life and I have to
put up with it) and stoical thinking (making light of the issues without doing anything
practical). Emotion focused coping is reported to lead to stress and vulnerability
but this may be an oversimplification of the issues. The type of strategy that is
positive may depend on whether it is possible to change a stressful situation or
not, and the needs of parents at particular times.
Cognitive appraisal and adjustment. Researchers and parents have
identified that the way in which we think and make sense of life events is an important
part of the process of adjustment, and that adjustment takes time. The individual
way in which we think about and interpret life events is an important part of coping
positively or negatively and will also influence our feelings and emotions. The
way in which we react to the news that our baby has Down syndrome will be influenced
by the beliefs of our community and our individual beliefs. If we believe that the
baby is a punishment for sin or a disgrace on the family, we will feel and think
differently from someone who sees this as a chance occurrence which could happen
to anyone and not an event to be ashamed of. If we are told that the baby will never
make much progress and always be dependent, then we will find it hard to think positively
about the future.
Factors that make families vulnerable
- Poverty, poor housing, no car, and unemployment - these disadvantages make parenting
more difficult in any family.
- Poor marital relationships, disharmony in the family.
- Personal resources, low self-esteem and self-confidence, passive and ineffective
- Poor parent-child relationship with child with Down syndrome
- emotional ambivalence
towards the child.
- Difficulties with control and behaviour management.
- The demands of parenting a child with Down syndrome who has atypical difficulties
- persistent behaviour or sleep difficulties
- more severe developmental delays
- chronic health difficulties
- acute, life threatening, health difficulties
- a difficult temperament e.g. restless, over-active, impulsive
Services and support
- Limited family and social support.
- Inadequate services
For all parents there will be a period of adjustment, since they had a set of expectations
for their healthy baby which they now have to change to take account of the fact
that their baby has Down syndrome. Some parents will find it easier to reconstruct
their hopes for their child and their future than others, and this will be influenced
by their underlying personality characteristics. It may also be influenced by their
previous experience of coping with stressful life events.
To identify that evaluating the positive or negative effects of coping strategies
are more complex than the researchers often indicate, we can consider some examples.
Optimism and hope are reported by parents as important and positive coping strategies
and some of those hopes may later turn out to have been over-optimistic. However,
at the time, that level of hope was essential to feeling able to cope. Is that hope,
at that point, wishful thinking? If so, wishful thinking was a positive, rather
than a negative strategy, at that time.
Similarly, when is acceptance helpful and part of positive cognitive adjustment
(or coming to terms with the situation) because we have now made a realistic appraisal
of our situation and determined what we can or cannot change? When is it passive
acceptance and thought to be unhelpful?
When is active practical coping helpful and when is it not helpful? Most of the
time it seems that it is a helpful way to go forward, but it will not be helpful
if parents seek out practical therapy programmes which hold out false hope and place
enormous strain on the resources of the family in terms of time and money. (This
is more likely to happen when services have little to offer.)
Marital relationships. The quality of the relationship between
parents has been shown to be important. The way in which mothers feel supported
emotionally in the relationship, the practical involvement of father in child care
and in the decision making regarding the child are all important factors. Mothers
have reported the importance of good father-child relationships when asked to judge
how well they think that their family is functioning. Fathers also report that their
relationship with their partner and the quality of their family life is important.
Positive relationships between partners reduces the stress they experience.
Family cohesion and harmony. The quality of the relationships
within the family, the emotional warmth, the care shared between family members
and the ability to communicate effectively all influence family well-being. This
has been identified from questionnaire measures and from interviews with mothers
that allowed them to identify what was important without any leading questions from
the interviewer. In cohesive families, there is generally a happy atmosphere, everyone
is valued and respected, the achievements of each person are celebrated and the
family enjoy shared activities and being together. In cohesive families, mothers,
fathers and all family members report less stress.
The practical and financial resources of families influence their ability to cope
with the demands of parenting. Poor housing, poverty, lack of transport (a car)
and unemployment all increase family vulnerability. The impact of these factors
may be more stressful when one child has Down syndrome, as poverty and lack of transport
may reduce the opportunities to access support groups and services. The lack of
practical resources for laundry and adequate heating are also more significant.
As might be expected, the physical and mental health of parents has been shown to
influence family situations. It is important that parents are aware of their own
needs and take care of themselves. In terms of mental health, a number of studies
report increased levels of stress for both mothers and fathers in families with
a child with Down syndrome sometimes using mental health measures such as depression
questionnaires. However, these are usually small increases in stress and very few
parents actually score in the clinically depressed range. Some studies suggest that
different factors affect fathers and mothers. Mothers are more stressed by childcare
issues and worries about how the family is functioning, while fathers are more worried
about the financial and practical needs of the family. These findings are, of course,
to be interpreted in the context of the family role expectations in the communities
Employment for mothers
Employment needs to be considered in more depth as the effects of unemployment for
mothers and fathers may be different. For fathers, unemployment may lead to serious
poverty for the family and all the usual negative consequences for the individual,
undermining self-respect and fathers role in the family. For mothers, being unemployed
and staying at home with children does not necessarily have negative effects as
it may be the typical role for women in the community or seen as a positive choice.
However, for mothers of children with Down syndrome, employment outside the home
has been shown in several studies to be a positive and protective factor. Working
mothers report less stress and more life satisfaction despite the extra demands
of work, child care and family. This beneficial effect of employment when coping
with demanding life events has also been shown in studies of depression in women.
Working outside the home provides social contacts and friends, a different role,
a change of daily demands and an increase in income. Unfortunately fewer mothers
of children with Down syndrome continue to work (56% compared to 76% of mothers
without a disabled child in one study). This is a finding with clear
practical implications and one that many mothers may find reassuring if they wish
to continue to work.
Some children with Down syndrome may be more difficult to care for than others and
place extra demands on all members of the family, especially parents. The reader
will note that most of these characteristics may also be seen in children without
disabilities and will also cause increased parenting demands for their families.
Health issues. The needs of children with acute illness or chronic
illness, requiring hospitalisation or hospital visits and treatment will cause additional
stress or demands within families. For example, if a child has a chronic heart problem,
chronic bowel condition or childhood leukaemia, this will cause significant additional
All children with Down syndrome have additional health needs and this leads to more
hospital appointments and often more illness than that experienced by typically
developing children. However, in the research studies, it is when the healthcare
needs of the child with Down syndrome are more significant and serious than they
are for the majority of children with Down syndrome that they increase the family's
Temperament. The demands of children with hyperactive, excitable
or difficult temperaments will be more difficult to manage than most other children
with Down syndrome. Children with more difficult temperaments are more likely to
have feeding, sleeping and behaviour difficulties and will be less likely to be
able to occupy themselves. These children may be particularly demanding for first
time parents to cope with.
Development. Families with children with Down syndrome who have
more significantly delayed development, children with multiple difficulties (additional
physical difficulties or brain damage) or children with autistic difficulties experience
and report more stress. There is a wide range of individual differences between
children with Down syndrome in rates of progress and degree of disability. Some
11% have significantly more delayed development and the families of these children
may face many more parenting demands.
Behaviour difficulties. Families with children with Down syndrome
who have persistent behaviour difficulties experience more stress. The evidence
suggests that these families are as stressed as those with autistic children or
children with other disabilities and similar levels of behaviour difficulty. They
do not show the comparatively lower stress pattern evident for most families with
children with Down syndrome.
The evidence also suggests that persistent and disruptive behaviour difficulties,
while only seen in a minority of children, begin in the preschool years and continue
during the school years. Therefore, intervention to help parents avoid these difficulties
needs to be available in the preschool years.
Sleep. Families with children who have poor sleep patterns experience
and report more stress. Sleep difficulties include settling problems, early waking
and waking during the night. Night waking is reported as the most stressful as it
results in broken sleep for both the child and the family. Studies also report a
link between disturbed sleep and difficult daytime behaviour. Sleep difficulties
usually start during the preschool years and parents should be alert to the risks
of long term sleep problems and seek help in managing problems as soon as they begin.
Attachment. In families where parents have found it difficult
to bond with the baby with Down syndrome, more stress and more behaviour difficulties
are reported. Some parents do not find it easy to feel unconditional love for their
baby with Down syndrome. They may struggle with conflicting feelings, predominantly
negative, towards their child for many years. When this is the case, it may colour
parents perceptions of the child and make it hard for them to feel positive about
the future. They may be more inclined to dwell on the problems that their child
presents than on the childs progress and achievements. The child in this situation
will usually sense the negative feelings and be emotionally insecure. In the authors
experience, this can lead to an increase in behaviour problems from the early years.
Sometimes the effects of the childs insecurity are not fully expressed until adolescence,
when he or she may express feelings by becoming aggressive or depressed.
Sources of support
Research suggests that the range of emotional and practical supports outside of
the family influence family well-being. The range of such supports that an individual
family or parent has will be influenced by the individual personalities and coping
styles of parents. In other words, if parents are isolated then it is not enough
to point out that more social networks will be helpful. The individual may not have
the confidence to access these sources of support and may be uncomfortable relating
to others in group support situations. Support for the individual parents personal
needs will be helpful before he or she will be able to benefit from other social
supports available in the local community. Seeking out social and practical support
is generally described as helpful, without comparing the benefits of different sources
of support. All the research on coping with stressful life events suggests that
those who are socially isolated are more vulnerable and less likely to make positive
Family and friends
The practical and emotional support provided by the extended family of grandparents,
aunts and uncles can be a very positive source of support to parents and brother
and sisters of children with Down syndrome. Equally, if grandparents cannot accept
the baby and are pessimistic about the future then this will make the positive adjustment
of parents more difficult. There is very little research on the role of grandparents
but this does identify possible positive and negative effects. However, in the majority
of families, the emotional and practical support provided by grandparents and other
members of the extended family is usually a very important positive part of the
family support network.
Social networks - church and community
The family's existing networks of friends in the neighbourhood, at church, play
schools, mother and toddler groups, and at clubs in the community can be a very
positive source of support, provided that they are positive about the child with
Down syndrome and welcome him or her into their homes or activities. This is illustrated
by parents reports of the support of their church - some have found the church
members a positive help, others have found their church community negative and unhelpful.
The beliefs that people have about disability and Down syndrome will influence their
attitudes and this will apply to family members, friends and contacts in shops or
on public transport. Too often parents report that they have to educate those around
them, including some service providers! However, most families do find positive
support in their local communities and benefit from this support.
Parent support networks
Many families report the benefits of joining parent support groups or Down syndrome
associations and meeting other families with children with Down syndrome. Some parents
report that the most significant emotional and practical help that they received
came from other parents. In the first months and weeks, parents often report that
it was helpful to meet other families who have got over the shock and feel positive
about their child and the future. It was also helpful to see that they and their
other children are leading ordinary lives. In parent groups, parents benefit from
the sense of mutual understanding and they benefit from the practical tips and advice
shared by those with older or similar age children. Parent groups can be a strong
voice for action when services or legislation needs to change. The emotional and
practical support of other parents can be extremely valuable when parents are fighting
for services on behalf of their child.
However, these benefits will only be felt if parents find understanding and support
from a local group. For example, parents with children who have more significant
difficulties do not always feel that Down syndrome groups meet their needs. The
group may be focusing on teaching children to speak and to read and getting them
into mainstream schools and these goals may not seem appropriate at all to the parent
of the more delayed child.
In the early days and months, one of the main things that parents seek is information.
Part of the shock and emotional turmoil associated with getting the diagnosis is
that it plunges parents into a world that they were not prepared for. Most parents
feel that they know what to expect when parenting a healthy baby, but once they
learn that the baby has Down syndrome they feel at a loss and sometimes as if they
are no longer in control of their lives. Accurate information about the baby and
young childs needs and expected progress, and the availability of local services
is usually reassuring and enables parents to begin to feel less distressed, to feel
that they will cope and to feel more able to adjust positively.
Information can come in many ways at the present time. It may be written information,
website information or verbal information from parents or service providers. It
should always be positive while being realistic everyone needs hope for the future.
There are a number of studies which document that way in which the diagnosis is
initially presented to parents affects their long-term adjustment. Information needs
to identify the strengths of children with Down syndrome, the fact that they are
children first and need to be a much loved member of the family in order to flourish,
like any other child, that families mainly cope very well, that life goes on and
that most families report the benefits of raising a child with a disability as well
as the extra demands.
Families in the communities where research studies have been carried out generally
value the support that they have received from services, especially early support
provided in the home. They particularly value services that provide them with practical
and realistic strategies for dealing with difficulties.
However, parents value services when provided by professionals who value the child,
respect the family, have good listening skills and are empathic, who are well informed
and share their knowledge with parents in a positive and supportive manner.
In some studies, parents have reported that dealing with some of the professionals
that they encounter because their child has a disability has been a major source
of additional stress, rather than a source of support. The stress may be caused
by the attitude of the professional and his or her way of working, or because parents
have to fight with them to get the service that they want for their child. All too
often, parents find that they know more about their child's disability and current
good practice than the professional and this identifies the importance of training
programmes in services. All too often, professionals do not work in a family centred
way, respecting the right of families to identify what help they need, what will
work for them and the hopes they have for the future for their child. Many professionals
do not respect the fact that the quality of life-time care of an individual with
Down syndrome depends on his or her family support whether or not he or she leaves
the family home. Parenting is a life long commitment for all parents the roles
change with age but parents and brothers and sisters play important life long roles
in most peoples lives. The main goal of services should be to strengthen families
and this theme will be extended in the later sections for families and for service
providers. Many professionals play minor and short-lived roles in the life of a
person with a disability but wield too much power in decision making relative to
their actual responsibility or ongoing commitment to the individuals.
Practical support - respite and benefits
Support for the everyday demands of caring for a child can make a vital difference
to the lives of families, and these can be financial contributions or practical
services that sometimes relieve the demands of caring.
Many studies identify the extra financial costs of raising a child with a disability.
Some costs are associated with child care needs wearing nappies for longer and
needing more changes of clothes, for example and the costs of travel to hospital
appointments, therapy services or parent groups. A major issue is reduced family
income because it is more difficult for mothers to return to work. Full-time work
is often impossible because school times do not fit in. When children are in special
schools, the school day is often short and mothers have to be available at transport
times. Children with disabilities need supervision for longer and the breakfast
or after school clubs available for other children of working parents rarely take
children with disabilities. Many countries recognise this financial burden and provide
disability benefits of various kinds.
These financial contributions are valued by families and lead to an improved quality
of life but there is a possible pitfall. Disability benefits are intended to meet
the extra costs for the individual with disability but it is easy for them to become
absorbed as part of the total family income. This can lead to difficulties when
a teenager or young adult has the opportunity to take a residential education or
vocational training course or to leave home to live independently of the family.
The family may be reluctant to allow the young person to move on because the disability
benefits will move with the person. It may help to alert families to this issue
when children are young and encourage them to think of the benefit as separate from
the general family income. Similar problems can arise when the family car has been
funded by a disability fund.
Practical support for caring is valued by families, when it provides some respite
from the daily demands and allows family members time to do things that may be difficult
to do with a child with a disability, such as visiting a museum with other children
or even shopping. It may also allow parents to simply relax and rest, especially
if a child has a high level of behaviour difficulty or care needs. Help in the home
with sitting services, alternate family care, or respite care in a service facility
can provide a life-line for families. There will also be benefits for the child
as he or she will begin to feel safe away from home and gain friends and new social
How families influence the development of children with Down syndrome
A small number of studies have looked at the progress of children with Down syndrome
in relation to family characteristics and coping strategies. Like all children,
the progress of children with Down syndrome is influenced by their family environment,
and their educational and social opportunities, not just determined by their genetic
makeup. Children with Down syndrome show the usual benefits of social class, with
those in families with more resources and higher levels of parental education making
better progress. They also show the same benefits of family position, with first
and only children making better progress, presumably due to more individual adult
In the Manchester studies,[19,21,23,24] the findings indicate
that progress in self-sufficiency (life skills) and practical skills were more influenced
by family factors than academic progress. Higher self-sufficiency scores were achieved
by children whose mothers used practical problem solving strategies and lower for
those who tended to use wishful thinking, even after taking account of the effects
of mental age on the children's progress. As the children got older, the link between
cognitive ability and life skills became weaker. Cognitive ability as measured by
mental age predicted academic achievement but family factors and social opportunities
had more influence on life skills.
After allowing for mental age and attentional difficulties, academic progress was
better when mothers used practical and problem solving coping strategies to deal
with child related problems, and worse in families where fathers tended towards
an external locus of control, and therefore felt that they had little influence
on events. Fathers active involvement with the child's development and education
has a positive effect on progress. (In an American study of families with a young
child, fathers who were more involved in the child's day to day care felt more competent
in their parenting role and had a better relationship with their child.)
There were links between family factors and persistent behaviour problems in children.
Children with lower mental abilities, higher excitability scores, higher incidence
of respiratory infections and lower self sufficiency scores were more likely to
have difficult behaviour. However, when these factors are controlled for in the
data analysis, behaviour difficulties were worse in families with poor family cohesion,
poor parent-child relationships, in poor housing and with low social support. They
were also worse when mothers used passive coping strategies and tended to have neurotic
personalities, when fathers were unemployed and when the family was experiencing
additional stressful life events. In other words, the way in which parents coped
and the family was functioning influenced behaviour even when child characteristics
have been taken into account.
Children in families with an active-recreational orientation, children with younger
mothers and children with more siblings had wider social lives, even when child
characteristics such as ability and behaviour are considered. In other words, family
factors influence children's social lives even for the less able or more difficult
A recent longitudinal study of American children with Down syndrome up to 10 years
of age has also identified the effects of family factors on the children's development. Progress in self-sufficiency, communication and
social skills were all influenced by family adaptability and emotional cohesiveness
and mothers positive interactive style when teaching her child. The effects of
these factors were pooled so that their individual importance cannot be identified.
The reader may be interested to know that the children's motor progress was not
affected by the family or mothers characteristics.
Children and families influence each other
In summary, these research studies show that parent and family characteristics and
coping styles not only influence the stress that a family experiences when raising
a child with Down syndrome but they also affect the development of the child. Unfortunately,
the way in which family strengths and child characteristics interact over time will
tend to make matters better or worse. A family with many strengths at the time that
a baby with Down syndrome is born will be able to cope in a way which reduces the
sense of distress and leads to positive parenting. This in turn leads to better
development and less behaviour difficulties for the child, continuing to make the
child more rewarding and life easier for the family. A family with many weaknesses
at the time of the birth of a baby with Down syndrome will be less able to make
a positive adjustment and feel able to cope. Their distress may lead to less effective
parenting and, in turn, the child will make slower progress and be more at risk
for behaviour difficulties. The child's difficulties become a greater burden and
increase distress in the family.
These somewhat extreme examples highlight the point made at the
beginning of this book that all families are transactional and dynamic
systems, that the behaviour of each individual affects the behaviour of
the others and that families change over time as they manage these
interactions. The examples used also emphasise the importance of very
early support for families to ensure that they are helped to make
positive adjustments and supported with advice on effective parenting
styles. The most vulnerable families are at significant risk of high
levels of stress and steadily increasing problems if early support from
families, communities and services is not available to them.
DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome.
RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching.
Find out more...