|
March 1998
Social Support in Families of Children with Chronic Conditions: Suppotive and Nonsupportive Behaviors.
Patterson JM, Garwick AW, Bennett FC, Blum RW; J Dev Behav Pediatr1997;16:383-391.
[ see abstract below ]
Social support is an important factor protective of physical and mental health. This is particularly the case when a patient lives with a chronic illness or a disability and becomes even more complex when this patient is a child. Social support is defined as the subjective sense of receiving something (emotional support, tangible help, and/or information) from family members, persons in the community, and professional service providers. The latter group includes physicians, nurses, social workers and other health care personnel. The public health literature contains many investigations as to the importance of social support, but many fewer on the effects of unsupportive behavior on patients and their family members.
Dr. Joan Patterson and colleagues at the University of Minnesota and the University of Washington report the results of their study of support and non-support experienced by parents of children with disabilities. They conducted structured interviews with members of 182 primarily two-parent, middle class Caucasian families with an infant or young child with a chronic illness or disability. After a systematic assessment of social support, the parent was asked whether anyone had said or done anything related to the child's chronic condition that was clearly not supportive. Seventy eight percent of mothers and 61% of fathers reported at least one instance unsupportive behavior; of the incidents reported, 35% were attributed to health care providers, mostly physicians.
I have chosen to include a review of this report because it is the first clear documentation that I have seen which includes specific data on the importance of the content and style of health care providers' communications. One-half of our nonsupportive behaviors were related to poor communication patters, such as avoidance, disrespect, or insensitivity. In addition, lack of adequate information, inadequate services, and poor care all were reported as hurtful to the child with a chronic condition or to their parent. As providers are increasingly harassed by the ever-increasing demands of providing more care in less time, we may be tempted to think that no one really cares what we say. Clear documentation that this is not the case may increase the support that we provide patients and families.
Return to the Current Literature Review Front Page, or read the abstract:
ABSTRACT
We questioned parents of 182 young children with a variety of chronic health conditions concerning the amount of emotional, informational, and tangible social support they received from the family, community, and service providers. We also asked parents to describe nonsupportive or hurtful behaviors received from family or community members. Both mothers and fathers reported that family members provided the most emotional and tangible social support and service providers the most informational support.
The amount of perceived support from all sources increased over time, but 73% of mothers and 60% of fathers reported at least one instance of nonsupport from these same sources, primarily from extended family members and health professionals.
We encourage health professionals to show respect and to provide timely, accurate information in a sensitive manner to parents whose child has a chronic health condition and to assist parents in handling nonsupprtive behaviors from family and friends.
|
