Interface of the Chronic Illness and the Family: According to Rolland (1994), “For clinicians and researcher alike, interaction is at the heart of all systems-oriented biopsychosocial inquiry. In physical illness, particularly chronic and life-threatening disorders, the primary focus is the system created by interaction of a condition with an individual, family, and other biopsychosocial systems” (p. 11). With this in mind, and referring to the Figure 2 (previous page) titled “Interface of Chronic Illness and the Family,” there are various domains of the family and the illness that meet and interact. According to Rolland (1994), these include the following (some are collapsed and included together—see important note under Figure 2 (previous page):
- Family style and the practical demands of the illness (i.e., interfaces 1 and 1). For example, the degree to which the family is cohesive, adaptable, and how they communicate, interact with the demands of the illness. If the illness of a family member is chronic for example, a highly cohesive family will likely do well at supporting one another and the affected family member. A highly cohesive family knows what other members need, and can rally around the ill family member. In contrast, a very distant family will likely experience more difficulty in supporting one another in this situation (Rolland, 1994). For example, a family that is very distant from one another will generally not know how to support each other in a time of crisis.
- Family development and the developmental time phases of the family (i.e., interface 2). The individual development of family members and the overall development of the family interact with the developmental time phases of the illness. A family that is still young (e.g., caregivers have been together a short time and/or young children are present) may have extreme difficulty in coping with a diagnosis of a young child with a terminal, chronic illness. Parents may feel responsible for their child’s condition, especially if the child’s condition is genetic. They may blame themselves for passing this on to their child. Moreover, caregivers may feel even more responsible for their child’s dire situation because children are supposed to grow, mature and die in old age. Rather, his/her child will likely pass on well before he/she does. While diagnosis of health conditions is stressful for any family, diagnosis of children is especially difficult to deal with than an aging adult, for example.
- Family paradigm and meaning attached to the illness (i.e., interface 3). Family beliefs and values can positively or negatively affect the way an ill family member is supported. For example, if there is a negative stigma associated with an illness that a family member contracts, how would that member be treated by the rest of the family, community, and/or culture? If an adolescent acquires HIV/AIDS through a blood transfusion, how might this be viewed differently by the family and society than if s/he was to contract it through intravenous drug use or unprotected sex? Even though an adolescent does contract HIV/AIDS through a blood transfusion, what type of stigma is associated with many who have HIV/AIDS in the U.S.? These are important questions to consider when working with families affected by certain stigma-laiden health conditions. What is more, a family’s beliefs and culture may help or hinder (though this can vary on a continuum) how well the family supports and rallies around an ill family member.
- Multigenerational history and historical data (i.e., interface 4). A family’s history with illness and crises can often be helpful in seeing the degree to which they are able to cope with the current illness or disability. If a family has experienced a similar condition in the past, a contemporary family member with a similar diagnosis might not present the same challenge to the family structure as an unknown condition might (i.e., ambiguity).