Once an adolescent with a chronic condition comes to the rheumatology clinic with his/her family, the health professional should be able to identify the impact of the dominant patterns of family functioning on the developmental aspects of the adolescent-parent relationship. Sometimes the adolescent is a symptom carrier for the family, and the health professional should wonder whose problem it is. The health professional should also:
1. Modulate empathy towards the adolescent and his/her parents
2. Raise questions in an nonjudgmental and open way
3. Support the parents and the adolescent in clarifying their respective demands
4. Enable and empower each person to express him or herself
A variety of theoretical models dealing with a systems perspective on the family have been developed by researchers, focusing independently on variables related to the cohesion, adaptability, and communication dimensions of the family dynamics.
Olson's circumplex model (7) was developed in an attempt to bridge the gap that typically exists between theory and practice. Clinically, it is used for identifying types of family systems and for planning treatment intervention. There are types of therapeutic techniques and interventions that are most and least effective with various types of systems. Moreover, the dominant patterns of family functioning may influence the developmental aspects of the adolescent-parents relationship. Olson's model is mainly based in the adaptability and cohesion dimensions. The adaptability dimension is defined as the ability of the family system to change (change role relationships, rules, and the power structure in response to situational and developmental stress). The four levels of adaptability range from rigid (very low): authoritarian leadership, roles seldom change, strict discipline, too little change to structured (low to moderate): leadership sometimes shared, roles stable, somewhat democratic discipline, change when demanded to flexible (moderate to high): shared leadership, role sharing, democratic discipline, change when necessary to chaotic (very high): lack of leadership, dramatic role shifts, erratic discipline, too much change. Central levels of adaptability (structured and flexible) are more conducive to family functioning.
The cohesion dimension is defined as the emotional bonding that family members have toward one another. There are four levels of cohesion, ranging from disengaged (very low): little closeness, lack of loyalty, high independence to separated (low to moderate): little loyalty, interdependent, more independence than dependence to connected (moderate to high): some loyalty, interdependent, more dependence than independence to enmeshed
(very high): high loyalty, high dependency). Based on this model, high levels of cohesion (enmeshed) and low levels of cohesion (disengaged) might be problematic for relationships. Again, the central levels of cohesion (separated and connected) make for optimal family functioning.
Family communication is the third dimension in this model and is considered a facilitating dimension. Because of its specific dimension, communication is not graphically included in the model along with cohesion and adaptability. Positive communication skills include empathy, reflective listening, supportive comments. These skills enable families to share with each other their needs and preferences as they relate to the other two dimensions: cohesion and adaptability. Negative communication skills include criticism, double messages and binds. They minimize the ability of family members to share their feelings.
Chronic conditions have a significant impact on families because the ongoing care and management of the condition rests primarily with the family (8). The Family Adjustment and Adaptation Response Model developed by McCubbin and Patterson (9) is especially useful for examining both the impact of the condition on the family and what resources and coping behaviors in the family facilitate a successful adaptation. Throughout the life cycle the family, like all social systems, attempts to maintain balanced functioning by using its capabilities (resources and coping behaviors) to meet its demands (stressors and strains). According to these authors (10), a stressor is defined as a life event that occurs at a discrete point in time and produces or has the potential to produce change in the family system. A strain is defined as a condition of felt tension associated with the need or desire to change something. Strain may emerge from the unresolved tension associated with prior stressors. An adolescent's chronic rheumatic disease is a stressor. The seriousness and chronicity of the condition will influence the intensity of the demand and how much it upsets the family's homeostatic state. When the family is unable to accept the situation in a positive way or when it is impossible to resolve the stressor completely, there is a residue of tension that is carried along by the family over time as a part of their "list" of demands. The outcome of the family's efforts to achieve balanced functioning is conceptualized in terms of family adjustment or family adaptation, ranging on a continuum from good to poor. A crisis is a state of disequilibrium, emerging in the family system when the nature and/or number of demands exceed the existing capabilities of the family, and this imbalance persists. It may arise, for instance, at the moment of the teenager's diagnosis of a chronic, severe, rheumatic disease. During the adaptation phase, the family attempts to restore homeostasis by either acquiring new resources and coping behaviors or reducing the demands they must deal with. The multidisciplinary team may play a crucial role in facilitating the acquisition of new resources and the development of coping behaviors.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.