Counseling and Therapy

The social workers role in genetic counseling 

• Social workers provide psychosocial services that help individuals and families with genetic conditions (Duke Eye Centre, 2009).
• Social workers are the first people who see the client after they have completed the initial registration for their genetic problem (Dils & Smith, 1980).
• Social workers need to be able to understand genetics, human behaviour and have appropriate counseling skills (Duke Eye Centre, 2009). 
• It is important for the social worker to recognize that clients can develop social and emotional difficulties related to their genetic condition. Social workers will need to be able to interpret these difficulties to the physician and to other helping professionals involved (Duke Eye Centre, 2009).
• After a genetic diagnosis, social workers need to provide supportive and therapeutic counseling for problems that could arise such as the weakening of marital and sexual relationships (Dils & Smith, 1980).
• Other roles Include (Dils & Smith, 1980): 

- Conducting follow up interviews

- Evaluation of services 

- Clarification and reinforcement of genetic information to the client

- Referring clients to community resources; the social worker needs to be the liaison between the family and resources

Issues that Social Worker’s Need to Be Aware of When Working with Clients

• Be aware of the clients defense mechanisms in order to help them face the situation realistically (Weiss, 1976).
• Recognize the emotional impact that the news of a genetic complication might have (Weiss, 1976).
• Families may face anxieties that they may not want to discuss with their physician; a social worker can be in tune with these unexpressed fears when they interview the client (Weiss, 1976).
• Social workers have to understand clients have the right to make their own decisions (Dils & Smith, 1980).
• Social workers have to be aware of the value conflicts that exist within the client as well as within themselves (Dils & Smith, 1980).
• Be aware that there is a lot of stigma placed on families that have children with genetic disorders (Dils & Smith, 1980).
• The genetic diagnosis often strains the relationship between the parents, and often gets worse when the issue of having another child arises (Dils & Smith, 1980).
• If a child is born with a defect, the parents may go through emotion shock (Dils & Smith, 1980).
• They might not love their child as society says they should, and may have secret feelings of wanting their child to die (Dils & Smith, 1980).
• Social workers need to be aware of the degree of disability/deterioration that will be experienced from the genetic disorder (Dils & Smith, 1980).
• Also the decision to keep the child often depends on cultural background and psychosocial backgrounds (Duke Eye Center, 2009). 
• Parents may need help in the decision to place a child in an institution or place him/her  up for adoption (Weiss, 1976). 

What should social workers focus on in practice?

Social workers need to focus on why the client is at the clinic in the first place and try to manage the client’s problem based on their specific situation. The expectations and fears from the client need to be considered in order for the social worker to effectively aid in the genetic counseling they are receiving (Weiss, 1976). 

Parents may need help in dealing with their responses to confirming the diagnosis of a genetic disorder. The social worker needs to help sort out emotional conflicts, especially with additional childbearing involving the genetic risks (Weiss, 1976).

It is important for the social worker to be geared towards the total care of the client and to be able to help in understanding the feelings the client is experiencing (Weiss, 1976).

The main goals of the social worker while working with clients are:

• Maximizing client’s benefits from treatment (Dils & Smith, 1980).
• Aid in helping the client get through family conflict resulting from genetic problems (Dils & Smith, 1980).
• Helping the client adapt positively to living with their genetic problem or family member’s genetic problem (Dils & Smith, 1980).
• Help to enhance overall quality of life for client and family (Dils & Smith, 1980).

Psychodynamic impact of genetic disorders on clients: 

• They are often unprepared for what they can expect involving tests, examinations, questions and special tests at the clinic (Dils & Smith, 1980). 
• They will most likely be anxious about what is going to happen to them and uncertain about the future (Dils & Smith, 1980).

Impact on couples:

• Partners could blame each other or their spouses family for the genetic problem (Dils & Smith, 1980).
• They may feel they are defective because they carry a harmful gene and feel guilty for passing it on to their children (Dils & Smith, 1980). 
• There is often fear that the genetic counsellor will reveal the specific partner that is at fault for causing the genetic disorder (Dils & Smith, 1980).
• Mothers may feel guilty for drinking or smoking during pregnancy, or for not wanting to have a baby with a genetic condition (Dils & Smith, 1980)

Prajna Counselling Centre. (2008). Retrieved from http://www.prajnacounsel.com/Family.html

Interviewing Strategies 

Non-directiveness

The concept of non-directiveness is that the role of the genetic counsellor should be an information provider instead of a decision maker. Information should be presented in a neutral, non-judgmental way. ‘Neutrality’ is often used to describe the ideal framing of communication between counselors and clients. This method should guarantee the client’s ability to freely decide what their next steps, if any, should be according to his or her own values. Non-directiveness is essential for counselor/client communication; to ensure the client does not feel pressured in any way, not only through counsellor pressures, but familial and societal pressures as well (Pilnick, 2002). 

Non-directiveness and autonomy 

Many critics have expressed that directive practice in genetic counseling threatens client autonomy. Autonomy is a key principle of bioethical approaches to medicine, and is one way of guarding against accusations of medical dominance or paternalism. Moreover, assisting clients to make autonomous choices also involves assisting them to develop the skills needed for the task of moral deliberation. To assist in these situations social workers must understand what the client wishes to accomplish (Pilnick, 2002).

Client autonomy vs. professional expertise 

Another issue related to autonomy is the fact that it may not be desirable to all those receiving a counseling service. In client-centred counseling, this point is rarely discussed, but it also has a influence on how the issue of what ‘most people’ do is to be handled. If counselors fail to answer direct questions of this kind, or deliberately avoid providing a suggested course of action, are not necessarily upholding the principle of client autonomy. However if a client wishes to give up his or her right to choice, how can the principle of non-directiveness be maintained? Therefore any response to this kind of question may be viewed as conflicting with one of the principles of genetic counseling. It is important to remember that clients ask questions about desirable courses of action of counselors not simply because they are having difficulties making their own minds up, but because counselors are rightly seen by their clients as experts in the field (Pilnick, 2002).

Case Studies 

A mother of a seven year old girl with Marfan syndrome, a disorder of connective tissue, who would grow excessively tall if she did not get a certain hormone therapy, needed intensive counseling about how to handle with her daughter the immediate onset of puberty and menstruation caused by the treatment. This was particularly upsetting to the mother who had marital problems, a history of years of sever menstrual cramps followed by a hysterectomy, and an inability to be warm with her daughter (Weiss, 1976).

Questions:

-How much of an impact will the mother’s past experiences influence her ability to cope with her daughter’s condition? How might you help the mother manage these emotional difficulties?

-What are some reasons that might be affecting the mother’s ability to get close or ‘warm’ with her daughter?

-What types of emotions might the seven year old daughter be experiencing? 

A father of a four year old child who had Hurler’s syndrome, which, among other manifestations, involves coarse features, severe mental retardation, and a prognosis of an early childhood death, was able to share his feelings with the social worker about the child eventually dying and also about his sexual frustrations with his wife, who seemed so immersed by her guilt that she took care of her child to the point of exhaustion, thereby shutting out her husband (Weiss, 1976). 

Questions:

-What type of emotions do you think this father is dealing with?

-What type of emotions do you think the mother is dealing with? 

-How might the diagnosis of a genetic disorder in their son affect their present relationship? What might be the issues faced for future child bearing?

Another parent, an adoptive mother of a young adult who had regressed from high intelligence to the I.Q. level of a three month old infant as a result of a genetic disease called San Filippo syndrome, was able to express her desire to have her daughter die at home without prolonged hospitalization and intravenous feeding. The social worker conveyed the mother’s request to the physician. The mother got her wish, and with it an inner satisfaction that she had helped her daughter as much as she could to end her days happily (Weiss, 1976). 

Questions:

-How might you deal with this situation if it conflicted with your values and beliefs?

-In what ways did the social worker help this family that maybe other helping professionals wouldn’t be able to?