Newsletter for May, 1999 - for AGSA members only

 
FAMILY COUNSELLING

The following extracts are taken from an address given by Fiona Richards, Social Worker, Department of Genetics, Royal Alexandra Hospital for Children, and Executive Committee member, AGSA.  THe address was given at the Charcot-Marie-Tooth 1993 Annual General Meeting.

Being part of the Genetics Department has made me more aware of not only how many serious genetic disorders there are, but the impact of these conditions on the person affected, and on the family.  I would like to talk generally about some of the common reactions to a genetic diagnosis, and the role of Social Workers and other counsellors in helping people to cope with these reactions.  Coping with the often devastation effects of a genetic disorder is a long complicated process for the individual, family and at times, the health professional.  Each person's reaction to the disorder is determined by his or her own personality, family and social support networks, and sometimes by the previous generations' experience of the illness.  In addition, the psychosocial and cultural background of individuals can have a strong influence on the way that genetic information is received, processed and interpreted. It is important, especially for health professionals to remember that a genetic diagnosis affects the whole family.

In discussing the various emotional reactions to genetic diagnosis, it is possible to see a parallel with the stages of emotional reaction often experienced by people facing a terminal illness and their families which have been described by Elizabeth Kubler-Ross.  These reactions are denial, anger, bargaining, depression and acceptance and most people don't progress neatly from one stage to the next but rather drift in and out of the stages as time goes on.

REACTIONS UNDER SLIGHTLY DIFFERENT HEADINGS. BEGINNING WITH:

        Grief:- which is the overall reaction to losses, present and future resulting from the genetic disorder.  These
          losses may be experienced by the parents as the loss of the dream of a perfect child and by the individual.
          For example, loss of independence, ability to earn a living, loss of control or effective functioning of parts
          of the body, loss of confidence, motivation, dignity, and self-esteem, sometimes loss of friends.  This grief
          shared by all family members to different degrees.

          Anger and Frustration:- about these losses and the difficulties experienced in day-to-day life.  Some
          people express this anger and frustration through aggressive behaviour, others become depressed and
          withdrawn.  Both these reactions tend to lead to further isolation.

          Guilt:- is often felt strongly about the possibility or knowledge that the abnormal gene has been passed on
          to the children even if unknowingly.  The guilt is sometimes associated with anger that someone in the family
          knew about the disorder but had not said anything.  Associated with the guilt also can be feelings of low
          self-esteem, shame, worthlessness and inferiority.

          Denial:- is often a factor underlying behaviour.  It is a form psychological defense where a person refuses
          to recognise a traumatic situation.  Most practise denial to a certain extent ignore every day lives.  In some
          families, denial can be recognised as a refusal to acknowledge problems associated with the genetic
          condition.  Often years of family silence and non-communication have reinforced the denial and this may be
          one reason for misdiagnosis.  Denial operates at different levels.  It may be conscious and can be dissolved
          if the person receives an empathic response.  Or it may be operating at a deeply unconscious level defending
          against depressive or aggressive impulses.

The consequences of denial for families includes:'

    1)    Ignorance of the existence of the genetic disorder in the family so that decisions are made without the
           knowledge of genetic risk.
    2)    Even if genetic risks have been explained, denial can lead to having children a way of reinforcing the
           belief that there is nothing to worry about.
    3)    Avoidance - of medical and social support services as contact with these services means facing the
           distressing problems that some families would prefer to ignore.  Sometimes the health services are
           perceived as the source of the problem and so are avoided.  Of course, there may be other reasons why
           services are avoided.
    4)    Distortion of Genetic Information - It has been known that families have been told incorrect information by
           health professionals but even when given the correct facts people sometimes choose to believe otherwise;
           for example, that the disorder can skip generations, that it only affects males or females, that children who
           look like the affected parent will be the ones to get the disorder and so on.  There is no simple solution for
           overcoming denial.  Often it decreases with time if there is adequate support and understanding and the
           family gradually comes to an acceptance of their situation.

SOCIAL EFFECTS OF GENETIC DISORDERS

        Social Isolation:- can result from community ignorance of genetic disorders, feelings of embarrassment or
        stigmatisation.  Community attitude is improving, however, and there is more acceptance of disabilities than
        there was 10 or 20 years ago.  Self-help associations such as yours play a very important role in promoting
        public awareness of genetic disorders and encouraging more understanding.

        Stress:- associated with caring for someone with a disability, restriction of social activities, financial
        difficulties, anxiety about genetic implications and the future of children. This can put a strain on relationships
        both within and outside the family, for example, marriage and work relationships.

        Effects on Children:- of growing up with a parent who has a genetic condition.  These will vary according
        to the way in which the parent is affected  and how this parent and the unaffected parent are seen to be
        coping.  Often members of the extended family can be an additional source of comfort and support for
        children for example, grandparents, aunts and uncles, and cousins.

Children can react to anxiety and stress within the family by experiencing behavioural problems.  These will usually decrease when their fears and concerns have been addressed.

BENEFITS OF COUNSELLING

These fall into two areas - information and support.  A Social Worker (or other counsellor) aims to facilitate the best possible adjustment to the genetic diagnosis over time for the individual or family.  During the initial phase of shock, disbelief and grief, the Social Worker can be supportive and encourage the family's expression of feelings reassuring them that these are normal reactions.  At appropriate times, the Social Worker can repeat and clarify information the family has been given about the condition.  As time goes on, the Social Worker can offer guidance on  how best to explain to other relatives and friends about the condition, which should help to minimise any communication problems with the family's social network.

The Social Worker can also act as an advocate for the family, if necessary, in dealing with the health system.  Social Workers can provide information about resources available in the community including financial benefits.

Social work contact with families affected by a genetic disorder may be brief or ongoing, depending on the severity of the condition and the family's reaction.

Families and affected children may experience crises at significant stages of development; for example starting kindergarten or school and during adolescence.  At these stages parent and child are confronted once again with the reality of the condition and differences from others.  This may precipitate and emotional crisis for those who have not come to terms with, or accepted the reality of the condition.  Social work counselling and possibly even referral for psychiatric assessment of family therapycan be very beneficial in these situations.

People affected by a genetic condition feel initially that they are the only ones in their situation.  Meetings with others through Associations such as yours, who coped with the various crisis times, can be invaluable.  Support groups offer the opportunity to express feelings openly with accepting and understanding peers.  In my experience, support groups are also the best source of up-to-date, accurate and understandable information about the genetic disorder.
 

RESOURCES AND AIDS

CATHY HOUSE

The Lions Club of Tin Can Bay Inc., recently wrote to AGSA.  The correspondence included brochures and details of Cathy House, a holiday camp on the foreshores of the Great Sandy Straits.

The house caters for up to 44 people and has a huge entertainment dining room, large commercial kitchen, laundry and inground pool with ramp access for the disabled.  The bedrooms are 4 to 6 birth and the cost is $6.00 per head per day.

Day trips to Cooloola National Park, Fraser Island and the coloured sands can be arranged.

For further bookings or enquires contact John Hunter, (074) 86 4269, or write to the Lions Club of Tin Can Bay Inc., c/- Post Office, Tin Can Bay, QLD 4580.

Back to Family Members page

What is AGSA? | Members Page | Membership | Support Groups | Genetic Conditions | Genetic Terms | Hospital links | Request for information | News | Conferences/Seminars | How can you help? | Contact Details | FAQs | Home | Email