Academic journal article The Qualitative Report

Challenges & Strategies for Conducting Qualitative Research with Persons Diagnosed with Rare Movement Disorders

Academic journal article The Qualitative Report

Challenges & Strategies for Conducting Qualitative Research with Persons Diagnosed with Rare Movement Disorders

Article excerpt

Huntington's disease (HD) and young-onset Parkinson's disease (YOPD) are progressive neurological movement disorders that affect both voluntary and involuntary motor control. Both also have associated psychosocial concerns that can add to the disability experienced by those living with these conditions. These conditions may be considered rare or uncommon, given the very low world-wide prevalence rates associated with the conditions. In fact, both conditions are listed as "rare diseases" by Orphanet (2012), a recognized international organization aimed at generating awareness of such conditions. Estimates vary, but HD affects approximately 4-8 per 100,000 worldwide (Harper, 1992). In comparison, YOPD occurs in approximately 12-45 per 100,000 in countries around the world (Muangpaisan, Hori, & Brayne, 2009; Schrag, Ben-Shlomo, & Quinn, 2000; Wickremaratchi et al., 2009; Willis, Schootman, Kung, & Racette, 2012). However, there are a number of issues that make the estimated prevalence of YOPD challenging, which will be discussed in the section on YOPD that follows.

Limited work has explored challenges in conducting qualitative research with either of these populations. However, Williams and Ayres (2007) discussed the importance of rapport building and finding "common ground" for HD care partners when discussing sensitive issues; researchers in Sweden (Hartelius, Jonsson, Rickeberg, & Laasko, 2010) explored communication issues with HD individuals, their family members and professional care providers; and an abstract (Skirton, Soltysiak, & Gardiner, 2007) briefly discussed the challenges of using qualitative methods with individuals with manifest HD. Sheriff and Chenoweth (2003) identified a number of challenges encountered by a multidisciplinary team evaluating an outpatient rehabilitation program for people with PD in Sydney, Australia. Although these authors identified challenges such as poor recruitment support from general practitioners, the perceived vulnerability of the participants and difficulty separating researcher and therapist roles, the majority of their sample was over the age of 60 and thus not specific to YOPD. However, researchers have discussed challenges and strategies for researching individuals with other neurological impairments including dementia, traumatic brain injury, and stroke (Lloyd, Gatherer, & Kalsy, 2006; Nygard, 2006; Paterson & Scott-Findlay, 2002; Wiersma, 2011). On a broader level, a number of challenges faced by qualitative researchers have started to receive attention in the literature, including challenges like developing rapport, self-disclosure, researcher exhaustion, and exiting the research relationship (e.g., Dickson-Swift, James, Kippen, & Liamputtong, 2007). While helpful, awareness of these general challenges do not address specific issues that may arise while conducting research with persons with uncommon movement disorders, such as HD and YOPD.

Purpose

The purpose of this article is to discuss some of the challenges and strategies of using qualitative research methods to explore HD and YOPD, based on our own experiences conducting qualitative research with these groups. Our hope is that this article will encourage and assist researchers to use qualitative research methods to explore individuals with a variety of health conditions, and particularly those with unique challenges that might complicate their ability to participate in research. For example, individuals with impaired cognition or speech difficulties may sometimes be unfairly excluded from participating in research studies. Moreover, alternate paradigms of qualitative inquiry, such as constructivism, are capable of empowering participants and achieving social justice (Denzin & Giardina, 2009). Social justice may result by identifying challenges and strategies for conducting research with vulnerable populations thus facilitating the participation and contribution of individuals who might not otherwise have an opportunity to voice their experiences. …

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