Families Dealing with Stroke Desire Information about Self-care Needs z %cat+ zy *”@! Linda L. Pierce, PhD RN CNS CRRN FAHA Michael Gordon Finn, MSN RN Victoria Steiner, PhD Key words z caregivers, families, stroke, information, self-care needs zy As hospital lengths zyxwvutsr of stay have decreased, healthcare pro- fessionals have less opportunity to fully educate stroke pa- tients and their families regarding self-care before the pa- tient is discharged home. Consequently, families often need continuing education provided to them in outpatient set- tings. The purpose of this study was to identify the self-care needs about which people dealing with stroke most fre- quently want information. Twenty-four people responded to a survey that listed 48 self-care needs structured within Orem’s universal self-care requisites (USCRs). The top five self-care needs about which information was desired were: preventing falls; maintaining adequate nutrition; staying active; managing stress; and dealing with emotional and mood changes. These needs correlated with several of Orem’s USCRs. By keeping these needs in mind, healthcare professionals can develop better educational materials and provide more pertinent information to stroke patients and their families during homecare zyxw or office visits, support group meetings, or via the Internet. Linda L. Pierce is a professor at the Medical College of Ohio (MCO) School of Nursing. Michael Gordon Finn is the nursing director, rehabilitation services at MCO Mercy Rehabilitation Hospital. Victoria Steiner is an assistant pro- fessor at the MCO Department of Medicine. Address corre- spondence to Linda Pierce at 3015 Arlington Avenue, Tole- do, OH 43614 or e-mail lpierce@mco.edu. Stroke is one of the most common medical emergencies. Every year, approximately 750,000 Americans have a stroke (American Stroke Association, 2002; National Stroke Association, 2003); 590,000survive and 5%-14% of these survivors will have a second stroke within a year. The majority of survivors are over the age of 55 (National Stroke Association).Many stroke survivorshave se- vere physical and emotional effects (O’Connellet al., 2001). Four out of five families will have at least one member who will experi- ence a stroke (National Stroke Association); and nearly 68% of stroke survivorswill require care in the home by family members (Dorsey & Vaca, 1998). Accordingto Eaves (2002),caregivers are dissatisfied with the help they receive from healthcare providers and family members concerning caring for a person with stroke; most of those caregiversrecognize that they need more help. It is a responsibility of healthcare professionals to educate stroke survivors and their caregivers to help them care for them- selves and prevent future strokes. However, staffing shortages and decreased lengths of hospital stays allow healthcare staff less time to interact with patients and their caregivers (Rausch & Turkos- ki, 1999).TheEfore, it is essential to identify self-care needs of fam- ilies and develop education resources that can be disseminated in outpatient settings, such as during homecare visits, office ap- pointments, support group meetings, and via the Internet are es- sential. This article reports the results of a mail survey of stroke survivors and their caregivers that asked them to identify areas of self-care about which they felt they needed more information. literature review zyxwvutsr Caregivers and stroke: Bakas and Burgener (2002) stud- ied a convenience sample of 104 caregivers of stroke survivors and found that low self-esteem, high task difficulty, and high threat appraisal were good predictors of emotional distress. They also stated that the inability to predict outcomes suggests the need for interventions to reduce the difficulty of caregiving tasks and to lessen the caregivers’ emotional distress. Dealing with stroke may be difficult because it imposes limitations, such as speech difficulties, loss of mobility, poor memory, and loss of dexterity (Cox, Dooley, Liston, & Miller, 1998). Anderson et al. (2000) found that families experienced poor mental health when stroke survivors were discharged home early in their re- covery, as they often are today. Zwygart-Stauffacher, Lindquist, and Savik (2000) conduct- ed a survey of general healthcare information needs of stroke patients and their caregivers to provide data for nursing admin- istrators who plan nursing services during acute hospitalization and periods of rehabilitation. Stroke patients rated the follow- ing five items as their most important needs: clear information about medications, tests, and treatments; specific instructions regarding exercising for physical recovery; timely therapy and medical attention; answers and explanations given in under- standable terms; and time to ask questions of and share their concerns with health professionals. Caregivers’ top five needs were: facts about the survivor’s condition; information on all options for treatment and therapy; information regarding the chances of recurrent stroke and how to reduce them; advice on when to call healthcare professionals regarding symptoms or an emergency; and timely therapy, service, and medical attention for their stroke-afflicted family member. Similarly, Eaves (2000) and Bakas, Austin, Okonkwo, Lewis, and Chadwick (2002) concluded that information about symp- toms, early treatment, and stroke prevention was essential, and Burman (2001) stated that caregivers did not know what to 14 Rehabilitation Nursing Volume 29, Number 1 JanuaryFebruary 2004