Ethical issues relating to the inclusion of relatives as clients in the post-stroke rehabilitation process as perceived by patients, relatives and health professionals

Abstract

The needs of relatives are well known. The next step is to legitimize their right to receive services and to acknowledge the combined clinical and ethical value of including them post-stroke. Interdisciplinary health care approaches and communication skills should be addressed.

To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

“…'Role overload' and juggling roles have been described by stroke families as a common poststroke scenario (25), possibly accounting for the lack of control and uncertainty usually reported (8). A comparative study found that established caregivers were sooner able to identify coping strategies than firsttime carers (22), indicating perhaps that prior experience, knowing what to expect, and being able to plan, may help stroke families manage their situation, corroborating our and others' findings (23,24). It was unclear among our participants which constructs (prior caregiving experience, health background/education or personal qualities), individually or collectively, contributed to their preparedness and may be a focus of future research.…”

“…For our participants, the hospital environment and medical management of their family member were familiar and they knew where to obtain information and resources, differing from experiences reported by families in other stroke research who described the hospital environment as strange and frightening (19). These other families felt they lacked knowledge and experienced difficulty accessing information (20,21) and their unpredictable circumstances perpetuated uncertainty and anxiety (22,23).…”

Needs of Stroke Survivors as Perceived by Their Caregivers

“…Almost all studies reported the data collection process. Thirty studies provided the rationale for their research design, 9, 11, 23, 25–27, 29, 31–33, 35, 39, 41, 42, 44–50, 52–54, 58, 62, 65, 66, 70, 71 nine discussed the relationship between researcher and participants, 29, 42, 44, 46, 50, 54, 66, 70, 71 37 reported rigorous data analyses procedures, 4, 7, 9, 11, 24, 26–28, 30–37, 39, 41–46, 48–50, 52–54, 58, 60, 63, 65, 67–70 45 reported the ethical considerations, 4, 7, 9, 23–25, 27–29, 31, 32, 34, 36–50, 52–60, 62–66, 68–71 and 49 reported the recruitment strategy. 7, 9, 11, 23–25, 27–32, 34–63, 65–71 Of the 10 quantitative studies appraised using CEBMa, all clearly addressed the research question, methods, selection of participants, and had a sample representing the population.…”

“…communication with health care professionals 4, 24, 26–28, 30–32, 34, 36–38, 41, 44–46, 48–50, 52, 57–60, 63, 64, 67, 73–75, 82, 83 – “It would have been nice to have somebody sit down with me and say this is what’s happened.” 31 …”

“…additional rehabilitation, 26, 28, 29, 46, 57, 59, 68, 73, 83 family centered approach 60, 77 – “family-centered approach as ideal.” 77 …”