Addressing the Needs of Caregivers: Self-Reported Practices of Occupational Therapists in the U.S.

Objective: To investigate the (1) the attitudes of occupational therapists regarding caregiver training for the informal caregivers of people who experienced a stroke, (2) strategies for assessment of caregivers, (3) content of caregiver training and education (CTE) sessions, and (4) barriers and supports therapists experience in addressing the needs of caregivers. Method: Responses to a novel survey by 73 registered occupational therapists (31% response rate) who treated adult clients with stroke in the past year were compiled. Descriptive statistics were calculated to analyze the attitudes and practices of the respondents. Chi-square crosstabulations were utilized in data analysis. Results: Top needs respondents reported caregivers claiming included lack of experience in care skills for ADL tasks and feeling overwhelmed. The type of need most typically addressed by respondents was the lack of experience in care skills for ADL tasks (95%). More consistency of responses was found for therapists considering clients with physical deficits compared to responses when considering clients with cognitive deficits. Barriers impeding provision at CTE were a perceived lack of attendance at CTE sessions by the caregiver, a lack of motivation in the caregiver, time limitations, and perceived conflicts within the family. Enthusiasm by caregivers, referral to additional OT services, and interdisciplinary collaboration were reported as supports to the provision of CTE. Conclusion: The attitude and practices of the sampled occupational therapists moderately mirror recommended practices, but gaps in services remain. Attempts to overcome these gaps include referrals to additional occupational therapy services and utilization of interdisciplinary team members. Caregiver training 1 Each year, approximately 795,000 people in the U.S. sustain a stroke and it is ranked as a leading cause of long-term, serious disability (American Heart Association, 2009). The physical, cognitive, and psychosocial deficits brought about often require a large amount of care to enable the person to function in daily life. In recent years, the aging population and changes in the healthcare system, such as shorter hospital stays, insurance reimbursement policies, and expansion of home care technology, have transferred the majority of supportive care services to family caregivers (Family Caregiver Alliance, 2006). Family, or informal, caregivers are unpaid persons providing assistance to family or friends who need help with activities of daily living (Health and Human Services, 1998). According to a 2004 study by the National Alliance for Caregiving and AARP, approximately 44 million Americans serve as family caregivers (p. 19). It is estimated that the number of family caregivers will increase by 85% from 2000 to 2050 (Department of Health and Human Services and Assistant Secretary for Planning and Evaluation, 2003). Caregiving can be a rewarding and meaningful experience that is motivated by the intimacy of the relationship prior to stroke, feelings of obligation, culture, values, and a sense of attachment (Feeney & Collins, 2003; Lopez, Lopez-Arrieta, & Crespo, 2005). Caregiving, however, is an occupation that can encompass 24 hours a day, 7 days a week, with no sick days, no paycheck, and no praise (Greven, 2007). Seventy-four percent of informal caregivers manage work, family, and caregiving responsibilities simultaneously (National Alliance for Caregiving & AARP, 2004). These challenges put caregivers at risk for experiencing caregiver burden. Caregiver burden has been widely researched and is defined as “a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience” (Kasuya, Polgar-Bailey, & Takeuchi, 2000, p. 119). Many studies have found that Caregiver training 2 caregiving is related to physical and psychosocial issues, such as depression, illness, and decreased quality of life (Etters, Goodall, & Harrison, 2008; Pinquart & Sorensen, 2007; Schulz, Boerner, Shear, Zhang, & Gitlin, 2006). The sudden onset of stroke provides no time for preparation or adjustment to the change in roles and may not leave family members a choice about becoming caregivers (Lopez et al., 2005). In addition, there is a dearth of information conveyed to caregivers at the onset of stroke and a lack of training of caregivers in care management by healthcare professionals, including occupational therapists (Brereton & Nolan, 2000; Moghimi, 2007). There is an overall lack of attention to the needs of caregivers and a failure to utilize their expertise, thus, “. reinforcing feelings that they were „invisible‟ to healthcare professionals” (Brereton & Nolan, 2000, p. 504). This gap in services is tied to reimbursement practices, time constraints, and traditional medical models that focus only on the patient (Moghimi, 2007). Occupational therapists must address the needs of caregivers because of caregiving‟s association to burden, role as a meaningful activity, and potential to affect rehabilitation outcomes of patients (Moghimi, 2007; O‟Mahoney, Rodgers, Thomson, Dobson, & James, 1997; Smith, Forster, & Young, 2009). Poor health experienced by caregivers has been identified as having potential negative effects on the care recipient due to difficulties in managing the caregiving responsibilities (Pinquart & Sorensen, 2007). Intervention for caregivers is needed to also reduce healthcare costs, due to the fact that the leading cause of long-term institutionalization of stroke survivors is caregiver burden and stress (Han & Haley, 1999). Caregiver training and education is critical for positive outcomes for stroke survivors and their caregivers (Banford et al., 2001). Occupational therapists are also uniquely skilled at viewing all Caregiver training 3 persons holistically and understanding the meaningful occupations of caregivers to support them in their role (Coutinho, Hersch, & Davidson, 2006).