Caregiving and Parkinson?s disease

Abstract

Relatively little has been published in the international literature concerning the caregiving-related problems associated with Parkinson's disease. We therefore undertook two exploratory studies that have allowed us to identify the needs and specific problems perceived by such caregivers in both qualitative and quantitative terms.

Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients

“…This has been documented in studies exploring the caring role in other slow progressive diseases. [13-16] Many studies reporting on caring for family members with long-term progressive illnesses report that carers express a need to meet and share experiences with people facing the same type of situation. [13,17,18] However, the majority of carers in this study did not attend support meetings or wished to meet other HD carers.…”

Stressors identified by caregivers for veterans with Parkinson’s disease

“…Attend several times a year 11 (11) Prescreening of the questionnaire was conducted with six health care professionals who had experience with patients and caregivers and who had participated in PD research survey projects. One item was omitted due to confusion in answering the question.…”

Living With Moderate-Stage Parkinson Disease

“…For their part, Mott et al (2005) andde Villiers et al (2008) underscored that spousal caregivers wished to receive emotional, physical, informational, and material support to take better care of their spouses. Finally, Pasetti et al (2003) found that spousal caregivers and their spouses had similar needs, namely, integrate PD at the cognitive and affective levels; assume their different roles; share experiences; compare themselves against others; and receive support from family, friends, and health professionals.…”

“…To date, researchers have focused, above all, on the supportive care needs of persons with PD (Buetow Giddings, Williams, & Nayar, 2008;Hatano, Kubo, Shimo, Nishioka, & Hattori, 2009;Koller & Tse, 2004;Macht, Gerlich, Ellgring, & the Infopark Collaboration, 2003) or those of their spousal caregivers (de Villiers, van Heerden, & Nel, 2008;Dressen et al, 2007;Habermann & Davis, 2005;Mott, Kenrick, Dixon, & Bird, 2005;Pasetti et al, 2003) rather than those of the caregiverYcare recipient dyad. In past studies, supportive care needs have referred to the perceptions of individuals regarding the formal and informal help services and resources available to compensate for deficits related to the disease, including at the physical, emotional, psychosocial, informational, educational, spiritual, and instrumental levels (Beauregard & Dumont, 1996).…”