Letting nature take its course: A qualitative exploration of the illness and adjustment experiences of Hong Kong Chinese people with Parkinson's disease

Abstract

Parkinson's disease (PD) is the second most common neurodegenerative disease, affecting approximately 10-million people worldwide. Based on demographic changes and prolonged life expectancy, the estimated prevalence of PD is expected to double by 2040 (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013). PD has heterogeneous symptomatology. The impacts of PD are not solely physical because many PD patients also struggle to adjust to the emotional, social and personal changes brought by the disease (Auyeung et al., 2012). The diagnosis of PD, which is incurable and progressive in nature, is distressing and often perceptibly and imperceptibly stigmatising. The visible symptoms of a distorted body

Coping Styles among People with Parkinson’s Disease: A Three-Year Follow-Up Study

“…A result that stood out was that “Wish for information” was such a prominent coping style at both baseline and the 3-year follow-up, regardless of whether the PD severity had changed or not. This finding is in line with several previous PD-studies that described the need for information and suggests that active information-seeking is an important strategy [ 6 , 11 , 41 , 42 ].…”

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

“…Taking leave of activities, they could not perform anymore in order to adapt to everyday life The difficulties faced by individuals with PD in having to lose their job or knowing that they probably will lose it in the near future. Most of the participants stressed that they would like to be useful in some way in case they were not able to work anymore Remaining active in society as way to maintain levels of self-esteem The importance of support groups in offering a sense of belonging Individuals with PD stressed that it was very important for them to be able to take care of themselves, to be independent The importance of thinking in positive ways, and putting high value on the activities one could still do The challenges of maintaining their positive way of thinking, especially when the disease progresses individuals with PD to maintain independence in the activities which mattered most [35,[37][38][39]. 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].…”

“…In order to accept the disease, individuals described going through many different emotions from initial denial, through to sadness and anger, before eventually allowing themselves to be hopeful for their new future [41,46,47]. The process culminated in a shift in how they thought about their diagnosis, from having to adjust to living with a diagnosis they did not want, to a situation in which they were able hold an optimistic outlook and feel a sense of mastery in living with PD [35,37,39].…”

“…Although aspects of their self might change, participants who had adjusted were able to build on past relationships and events to maintain coherence in their sense of self, integrating the PD into an altered understanding of the self [43,45]. This acceptance facilitated proactive coping, such as through using mobility devices and making necessary adaptations to their activities, thus enabling continued social engagement alongside the ability to optimise care [4,37,39,45]. By continuing to adapt their activities to allow for sustained wellbeing and activity participation, individuals were able to redefine themselves in relation to their impairments and activity limitations [39,45,49].…”

“…For individuals experiencing cognitive impairment, or indeed where an individual's strongly held roles or self-beliefs were incongruent with PD related changes, acceptance was more challenging. In such instances, the representations an individual held of their physical and mental self-image seemed to be fundamentally incongruent with the illness identity [37,50]. Although this is likely to depend on individual beliefs about what acceptance of the illness might mean, it may also differ according to age or gender, where societal roles or expectations may contribute to incompatibility between sense of self and illness changes.…”