Challenges and strategies among women and men with Parkinson’s disease: Striving toward joie de vivre in daily life

Abstract

Introduction: To offer people with Parkinson's disease optimal occupational therapy, it is important to have a detailed understanding of how they manage everyday life. The aims of this study were to explore how people with Parkinson's disease manage the effect of the disease on everyday life and to investigate gender similarities and differences concerning this issue. Method: We interviewed 24 people with Parkinson's disease (14 men), at a mean of 8 years after diagnosis. The interviews were analysed according to Grounded Theory. Findings: 'Striving to maintain a good everyday life' was established as a core category. To overcome obstacles caused by the disease, the interviewees struggled with perpetual adaptation to the medication regime and ongoing changes in their abilities. To achieve best possible everyday life, it was essential to keep their own spirit up; for example, by prioritising valued occupations. Women and men contributed to all categories and used the same strategies. Conclusion: Men and women with Parkinson's disease used the same strategies to manage daily life challenges. Our findings support the relevance of disease-specific occupational therapy interventions focusing on the individual fit between person, environment and occupation, and highlight the need for joyful occupations to attain a satisfactory daily life.

Managing daily life among people with advanced cancer living at home: Responding to uncertainties related to shifting abilities, home care, and treatment

“…The findings from this study align with other studies that show that people with chronic and life-threatening illnesses developed and used strategies to maintain occupational engagement and daily habits (García-Rueda et al., 2016; Kallhed and Mårtensson, 2018; Morgan et al., 2017; Peoples et al., 2017; Sperens et al., 2018). For example, similar to the findings in this study, Kallhed and Mårtensson (2018) found that planning is one of the main strategies people with chronic pain employ to save energy and give priority to occupations that are meaningful to them.…”

Adjusting to living with Parkinson’s disease; a meta-ethnography of qualitative research

“…Individuals were determined to maintain their usual activities as far as possible even when this was at conflict with doctors' advice about expected behaviours, only adjusting their behaviour when their habitual activities were no longer working for them [40]. Although negotiating the role in the family was often necessary [41] focusing on the continuity of these relationships allowed an individual to maintain who they wanted to be [41][42][43]. Support groups were one forum where an individual gained friendship which encouraged a coherent sense of self.…”

Perceived Impact of Non-contact Boxing on Daily Life and Occupational Participation at Home Among Individuals with Parkinson's Disease

“…The current literature strongly suggests that Parkinson's disease presents barriers to occupational participation and impacts one's performance patterns (Sperens et al, 2018). Additionally, individuals in advanced stages of the disease tend to have greater performance deficits and barriers to participation in meaningful occupations (Sperens et al, 2018). This capstone project assumes that there may be carryover of benefits secondary to boxing from the gym to the home environment.…”

“…Individuals with Parkinson's disease maintain their quality of life best by prioritizing valued occupations during occupational therapy interventions (Sperens et al, 2018). Interventions may follow an acquisitional, restorative, or adaptive approach depending on the stage of the disease (Jansa & Aragon, 2015).…”

“…The semi-structured interview (see Appendix E) included open-ended questions about the participants' home occupations and their perceptions of how the non-contact boxing class has impacted their participation in these meaningful occupations. Interview questions were developed to outline ADLs and IADLs from The Occupational Therapy Practice Framework (OTPF) and influenced by two recent studies that collected information using semi-structured interviews ("Occupational Therapy Practice Framework," 2017; Sheehy et al, 2017;Sperens et al, 2018). A semi-structured Number of Participants by Level interview script guided discussion and provided a basis for comparing responses when the data was later coded to identify themes .…”