Academic journal article The Qualitative Report

Parkinson's Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

Academic journal article The Qualitative Report

Parkinson's Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

Article excerpt

Motor problems such as balance problems, bradykinesia, and rigidity of movement are often considered the hallmark symptoms of Parkinson's disease (PD); however, individuals also contend with many non-motor symptoms (e.g., fatigue, cognitive problems, and autonomic nervous system changes; Olsson, Strafstrom, & Soderberg, 2013). While all of these challenges make living with Parkinson's difficult, psychosocial aspects, particularly the need for emotional support, are often cited as one of the most problematic (Kleiner-Fisman, Gryfe, & Naglie, 2013). Additionally, more family support does not predict less psychological stress (Simpson, Haines, Lekwuwa, Wardle, & Crawford, 2006). Per Simpson et al. (2006), the predictive power for less psychological distress was related to having satisfaction with the social support that patients with PD experienced rather than the amount of support. Whereas constructs such as self-esteem and happiness were possibly influenced by the amount of support available (e.g., number of close relationships). Thus, belonging to a disease-based support group, particularly to cope with psychosocial aspects of the condition, is an important aspect for many people with Parkinson's (Artigas, Striebel, Hilbig, & Rieder, 2015; Lieberman, Wizlenberg, Golant, & Di Minno, 2005; Nishida, Ando, & Sakakibara, 2012).

The need for resources is particularly problematic in rural areas, where proportionately more elderly people have less access to healthcare than in the rest of the United States (Dorsey et al., 2010). While a drastic upsurge in adults 65 years and older is expected in the US population as a whole, rural areas will see the greatest influx of this age group (Baernholdt, Yan, Hinton, Rose, & Mattos, 2012; Merchant, Coussens, & Gilbert, 2006). People living rurally also have a disproportionate rate of chronic disease and poorer health in general (Coward, McLaughlin, & Duncan, 1994; Cromartie & Nelson, 2009; Hart, Larson, & Lishner, 2005), as well as a greater likelihood to be impoverished (Rosenblatt, 2001). Therefore, individuals with Parkinson's who live rurally face considerable challenges with disease management because in rural locations individuals have poorer health, less access to healthcare, and lower incomes than their urban and suburban counterparts do. Less access to healthcare in rural areas is usually due to fewer providers in general, as well as fewer specialists (Dorsey et al., 2010).

Purpose

Current knowledge in the field of Parkinson's disease support groups has been acquired using quantitative methods examining on-line support group effectiveness for people with Parkinson's (e.g., Lieberman, 2007) and their caregivers (Marziali, Donahue, & Crossin, 2005). Qualitatively, Attard and Coulson (2012) conducted a qualitative thematic analysis of patient communication in on-line support groups, and Bramley and Eatough (2005) conducted a phenomenological study with individuals with Parkinson's. However, none of the aforementioned studies focused on rurality or face-to-face support groups. While the researchers who conducted the two qualitative studies did employ thematic analyses, as we did, neither used focus groups, and the one phenomenological study did not seek an overall essence, as we did. Finally, one qualitative study we found used thematic analysis and sought the perspectives of people with Parkinson's, their caregivers/family members, and professionals, through focus groups, as we did; however, they did not seek perspectives of rural individuals, specifically, and conducted their study internationally. To our knowledge, no qualitative research exists about Parkinson's support groups that targets the perspectives of rural individuals using focus group data collections. Further, we do not believe that an interpretive phenomenological lens or analysis has been used in conjunction with community-based participatory research, like ours. …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.