The Importance of Social Support
". . . it is the worst hypocrisy to restore functioning to an individual only to have the gains deteriorate through ambient indifference. Post discharge care is usually short in duration, poorly organized, hospital based, and lacking in attention to psychological and social issues. All too frequently this sort of neglect results in unnecessary functional skill deterioration, increased health problems and a less-than satisfactory quality of life." Berk, SN; Schall,RR. "Psychosocial factors in stroke rehabilitation." Phys Med Rehabil Clin of No Am 1991 2 (3):547-562.
A core-underlying concept of the Center is recognition of the significance of group support. The group orientation of the model is possibly its most powerful feature. At the Center all therapeutic activities are conducted in groups. Each class is in part a support group. In every class, regardless of the specific curriculum, students encourage each other's efforts and progress. Having been at the receiving end of treatment during their days as a patient, students now have the opportunity to give.
This transformation, from passive patient to student and as student to active member of a supportive group, contributes to each participant's self-esteem, personal growth, physical improvement, and eventual independence. This transformation facilitates the transition from Easton’s realizing stage of recovery to the transformative stages of blending, framing and owning their disability.
The aggregate of these groups makes up a closely-knit micro-community that has remained a stable feature of the center for over three decades. The Center community conforms to the most comprehensive definition of the term. It encompasses all three key defining criteria: A true community must be 1) a clearly defined place; 2) a comprehensive social structure that organizes the needs and interests of the residents; and 3) a bond of local solidarity that is expressed as members act together to solve common problems and improve the well-being of the whole. (Wilkinson 1986)
Family: The Center’s community is strong enough that it serves in many instances as the student’s substitute family. Rehabilitation literature overwhelmingly indicates that family involvement is an important factor in the potential success or failure of long-term rehabilitation.
The illness of one family member has an impact on all other family members. Likewise, the reactions of family members to the individual with the illness have an impact on that individual. Family influences are complex, and difficult to measure because both the patient and the primary caregiver, who is frequently a spouse, undergo major changes. Indeed if previously set family roles do not shift with the new role of the disabled family member there is conflict, confusion and the potential for a lack of support. The disabled family member’s limitations frequently upset the family equilibrium. Relationships change as family member interactions create reverberating difficulties.
It has been found that patients without such support undergo physical and emotional deterioration and generally have a poorer outcome (Willliams and Freer, 1986). Several family variables appear to be significant predictors of post-hospitalization adjustment and re-hospitalization time. Positive family involvement predicts reduced hospitalization time, helps to prevent re-hospitalization and promotes rehabilitation success.
However, it has also been found that even strong families need assistance in improving problem solving and communication skills especially as a new family equilibrium is established.
Counseling has been found to be a superior intervention to education in helping families relate better emotionally and behaviorally after stroke (Evans et. al 1988). But both education and counseling are superior to routine medical care.
The Center’s model assists students with both healthy and dysfunctional or absent families. The combination of education and counseling for caregivers has a powerful impact on a participating family’s ability to support the rehabilitation process. And, when a family is not present, or is unable to cope, the Center’s strong community is often able to provide the absent family structure.
Social support can be defined as ". . .the information or experience of being cared for and loved, valued and esteemed; and able to count on others should the need arise. Different individuals and institutions can be seen as providers of social support and the support can take different forms and fulfill different needs for the individual. It is the individual's perception or experience of support that is the key factor." (Cobb S)
It is clear from recent studies addressing a variety of disabling conditions that social support has a significant impact on rehabilitation outcome. Powerful findings focused specifically on first strokes were reported in 1993 by researchers from Yale University School of Medicine (Glass et.al). They found ". . .that high levels of social support are associated with faster and more extensive recovery of functional status after stroke." Patients with more severe stroke and the largest amount of social support attained measured functional status levels that were 65% higher than the group reporting the least amount of social support. Social support may well be an important prognostic factor in stroke recovery and socially isolated individuals may be at particular risk of poor outcome. Indeed, it is possible to view social isolation and poor social support as a risk factor in stroke recovery.
Individuals with poor social support experience functional improvement initially, but then fail to maintain improvement and actually decline over time. However, research is also indicating that too much support may be counter productive in recovery. Interview findings reveal that patients resent unwanted assistance, smothering attention from relatives and patronizing attitudes among hospital and rehabilitation personnel.
The Center’s counseling and education helps families achieve the appropriate balance of support. In addition, the fine balance between assistance and empowering students to help themselves is a constant factor in the Center’s staff interactions with students as well as students’ interactions with each other.
Since the early 1980s it has been reasonably well established that stressful life events are associated with subsequent illness. It has been further established that certain factors may mediate between the impact of events and illness. Social support is one of these mediating factors. Individuals who have had a stroke or another form of acquired disability are subject to an inordinate amount of stress. They are subject to the same stressors which affect the general population. In addition, they are stressed by the serious illness event and the resulting functional changes.
Upon returning home, the individual is confronted not only with changes in functional performance, but also in family roles, social life, and in employment or leisure skill status. The events experienced tend to be negative, beyond the individual's control, and unanticipated, adding to the resultant stress.
Cohen and Syme suggest that social support acts in three ways: 1) it may reduce the perceived impact of stress; 2) it may promote and facilitate healthier behaviors; 3) or it may tranquilize the neuro-endocrine system, diminishing the physiologic response to stress.
Of particular interest to the Center are the findings of Friedland and McColl. They showed that social support from friends, community and close personal relations has a protective effect against poor psychosocial outcomes. But that support currently offered by community health professionals (doctors, nurses, social workers and therapists) has little effect in terms of psychosocial adjustment. They postulated that the simple presence of professional support may reinforce patients' needs for ongoing treatment and their continuing sick role. The instructor, mentor, or coach/student relationship coupled with the peer relationships and common community member interactions typical at the Center are significantly different than those of the health care professional and patient.
Social support can be mediated and improved within educationally based rehabilitation setting. At the Center, educational strategies aimed at improving social support continue to be explored and implemented.
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