What Are the Educational Needs of Prospective Family Caregivers of Newly Disabled Adults?

Abstract

What are the needs of family caregivers of newly disabled adults? Research to date has focused on the needs of family members of patients in critical care units and of family members who have been in the caregiver role at home for some time. No studies could be found on the perceptions of individuals facing the decision to assume the family caregiver role for a newly disabled adult anticipating discharge from a physical rehabilitation or medical-surgical nursing unit. Watson's philosophy of science and caring provided the theoretical basis for this study. The Elaine Matthis Educational Wants of Family Caregivers of Disabled Adults Questionnaire was used to assess the perceptions of prospective family caregivers visiting newly disabled adults in an urban medical center. The results of this research are offered to help nurses understand the feelings of uncertainty about the new and unexpected role that family caregivers face and to help nurses meet the needs of families preparing to take disabled adult relatives home.

Evaluating a community nursing service: listening to the voices of clients with an intellectual disability and/or their proxies

“…The evaluation involved the three Clinical Nurse Consultants in the design based on the domains of the Clinical Nurse Consultant’s nursing practice and the literature reviewed. The domains are: continuity of care (Collin, 1995; Harris, 1995; Mudge, 1995; Whyte et al., 1995; Maggs & Laughrane, 1996), advanced nursing practice (McMurray, 1992; Doell Smith, 1994; Mansell & Harris, 1998), education and credentialling (McKenzie, 1983; Whyte, 1992; Doell Smith, 1994; Gates & Wray, 1995; Bratt & Kirby, 1995; Burggraf & Barry, 1995), personal and professional attributes (Burdekin, 1995; Lawrie, 1995; Drage & McNally, 1995; Weeks, 1995; King & Cheatham, 1995; Harris, 1995), primary health care principles (Beange & Bauman, 1990; Burggraf & Barry, 1995; Lawrie, 1995; Meehan et al., 1995; Lindsey, 1996; Barr et al., 1999; Bollard & Jukes, 1999) and normalization. More recently, Clinical Nurse Consultants considered the concepts of normalization and social role valorization (Wolfensberger, 1983; Knafl & Deatrick, 1986; Deatrick et al., 1988; Anderton et al ., 1989; Chappell, 1992; Wilson & Bartak, 1997).…”

Family Health and Functional Outcomes in Rehabilitation

“…Much has also been written about family participation in rehabilitation (Bishop & Evans, 1995; Brillhart, 1988; Butcher, 1994; Gillies, 1988; Glennon & Smith, 1990; Hochberger, 1985; Ryan, Wade, Nice, Shenefelt, & Shepard, 1996; Tarvin; 1995; Watson, 1992; Weeks, 1995; Willenbrink, 1990; Youngblood & Hines, 1992). The literature, however, revealed no information on the relationship between patient perception of family health and functional outcomes during acute rehabilitation.…”

“…Weeks (1995) noted that family members who visited newly disabled adult relatives in rehabilitation had many of their own needs as they faced both the illness/injury losses of their family member and the unexpected prospect of becoming family caregivers. Of the 45 items listed on the research questionnaire, 20 were rated as very important educational needs by the 83 participating family members.…”

“…Black, Soltis, and Bartlett (1999) noted a connection between functional status and family support in determining rehabilitation discharge destination. Our research into rehabilitation and family health (Weeks, 1995; Weeks & O'Connor, 1994, 1996, 1997) led us to look for a possible relation between family health and functional outcomes in rehabilitation.…”

The Rehab Café and Breakfast Buffet

“…Normal morning socialization occurs and conversation flows freely at the tables as patients help themselves and offer each other coffee and juice. The atmosphere of caring and choice promotes feelings of control, normalization, and satisfaction—values that patients and their families are seeking to regain in their lives (Knafl & Deatrick, 1986; Weeks, 1995).…”