Exploring the perceptions and stigmatizing experiences of Israeli family caregivers of people with Parkinson's disease

Highlights

• Three focus groups with 22 Israeli spouses of people with PD were conducted.

• Spouses did not share stigmatic experiences about themselves as caregivers.

• Spouses reported stereotypes attributed to the illness and/or to the people with AD.

Abstract

Providing care to people with Parkinson's disease (PD) poses challenges for family carers, including experiencing stigmatic beliefs —i.e., family stigma. However, to the best of our knowledge, there is no empirical study examining the stigmatic experiences of family members of people with PD. This was the aim of the present study. Three focus groups with 22 Israeli spouses of people with PD were conducted. Data were analyzed using theory-led thematic analysis. Overall, the spouses in our study shared mainly experiences of the stigma attached to the illness and/or to their loved ones, and not to themselves as carers. Three major themes emerged: the stereotypes that typify PD, stigmatizing behaviors towards the person with the disease, and structural stigma. Our findings highlight the profound stigma confronting carers of persons with PD, particularly when it comes to structural stigma.

Introduction

Parkinson's disease (PD) is a neurological disorder associated with old age (Armstrong & Okun, 2020; Savica, Grossardt, Rocca, & Bower, 2018). It is estimated that there are approximately six million people with PD worldwide, the majority of whom are over the age of 65 (GBD 2016 Parkinson's Disease Collaborators, 2018). Although characterized by motor symptoms such as slowness of movements, tremors, rigidity, and postural instability, the clinical presentation of PD also includes non-motor symptoms such as cognitive impairment, and psychiatric problems such as anxiety, depression, and hallucinations (Armstrong & Okun, 2020; Mosley, Moodie, & Dissanayaka, 2017; Pasquini et al., 2019). The progressive nature of the disease poses many challenges, not only to the person with the disease, but also to family members, who usually serve as carers, providing emotional and instrumental care without financial remuneration (Lageman, Mickens, & Cash, 2015; Mosley et al., 2017; Nunes, Alvarez, da Costa, A., & Valcarenghi, 2019).

As a result of their role, family carers may encounter negative consequences, including stigmatizing beliefs attributed to them because of their association with a person with PD (Maffoni, Giardini, Pierobon, Ferrazzoli, & Frazzitta, 2017), namely family stigma. The concept of stigma was first defined by Goffman (1963) as a mark that defines the holder as ‘spoiled’ and therefore as less valued than ‘normal’ people. Although Goffman referred mainly to the individual affected by the mark, he also suggested that stigma affects those associated with the person (this stigma by association is referred to as “courtesy stigma”), such as family members. Indeed, family stigma is a specific type of stigma and is defined as the experience of discrimination and social distance often felt by family members who are in contact with a person or group that carries a stigma (Hinshaw, 2007; Mak & Cheung, 2008; van der Sanden, Bos, Stutterheim, Pryor, & Kok, 2015). Although research is still scarce, in recent years several studies have examined this concept among family members of individuals with AIDS (HIV) (Ogunmefun, Gilbert, & Schatz, 2011), mental illness (Yin, Li, & Zhou, 2020), and Alzheimer's disease (Abojabel & Werner, 2016; Werner, Goldstein, & Buchbinder, 2010). However, despite anecdotal evidence (Maffoni et al., 2017), to the best of our knowledge there have been no empirical studies examining the stigmatizing experiences of family members of individuals with PD.

This is surprising especially since there is a relatively vast literature addressing the experiences of stigma for individual with PD themselves, i.e., self-stigma. Overall, this works suggests that there are two main factors associated with PD self-stigma: physical symptoms and age. In the context of physical symptoms, motor symptoms such as tremors, small steps, and “mask face” are reported as the main sources of stigmatic beliefs towards people with PD (Hermanns, 2013; Mshana, Dotchin, & Walker, 2011; Nazzal & Khalil, 2017; Pentland, 1991; Pitcairn, Clemie, Gray, & Pentland, 1990; Soleimani, Bastani, Negarandeh, & Greysen, 2016). These symptoms may provoke negative emotions among people with PD including shame, humiliation and embarrassment, which leads to a tendency to hide them using various strategies such as laying hands in pockets to disguise them shaking or avoiding social interactions (Burgener & Berger, 2008; Hermanns, 2013; Soleimani, Negarandeh, Bastani, & Greysen, 2014; Tickle-Degnen, Zebrowitz, & Ma, 2011). Regarding age, studies show that the stigma directed towards a person diagnosed with PD before the age of 50 is stronger than the stigma of a person diagnosed with the disease at an older age (Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2003). This might be a result of the public perceiving a young person with PD as abnormal (Hermanns, 2013; Moore & Knowles, 2007).

Since different types of stigma, such as self- and family stigma tend to be associated (Bos, Pryor, Reeder, & Stutterheim, 2013), there is need to also explore the stigmatizing experiences of family members providing care to their relatives with PD, especially since studies examining family stigma in a variety of other illnesses have clearly and consistently indicated that its consequences are severe and include social isolation (Murphy, Peters, Wilkes, & Jackson, 2017; van der Sanden et al., 2015), psychological problems such as anxiety and depression (Chang, Su, & Lin, 2016; Grover et al., 2017; Mak & Cheung, 2012; Murphy et al., 2017), high levels of care burden (Kahn, Wishart, Randolph, & Santulli, 2016; Werner, Mittelman, Goldstein, & Heinik, 2012), and avoidance of referrals for help from social services (Xiao, Habel, & De Bellis, 2015). However, because it cannot be assumed that the experience of family stigma is the same across diseases (Angermeyer & Matschinger, 2003), it is crucial to explore this topic among carers of individuals with PD specifically. This was the aim of the current study.