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

Figures & data

Table 1. Table displaying the search strategy and the terms used for each database.

Database	Free text – methodology (title/abstract/keyword)	Subject headings-methodology	Free text -Parkinson’s disease (title/abstract)	Subject headings-Parkinson’s disease	Free text- adjustment (title/abstract)	Subject heading-adjustment
PsycInfo	“interview” OR “thematic analysis” OR “phenomenol*” OR “narrative” OR “focus group” OR “discourse analysis” OR “grounded theor*” OR “content analysis” OR “hermeneutic*” OR “heuristic*” OR “experience” OR “perception”	DE "Qualitative Measures" OR DE "Qualitative Methods"	"Parkinson* Disease"	DE "Parkinson's Disease"	“adjust*” OR “adapt*” OR “accept*” OR “manag*" OR "coping OR “resilience”	DE "Adjustment" OR DE "Resilience (Psychological)" OR DE "Adaptability (Personality)" OR DE "Self-Management"
MEDLINE	As above	MH "Qualitative Research"	As above	MH "Parkinson Disease"	“adjust*” OR “adapt*” OR “accept*” OR “manag*" OR "coping” OR "resilience"	MH "Adaptation, Psychological+" OR MH "Self-Management/PX"
CINAHL	As above	MH "Qualitative Studies"	As above	MH "Parkinson Disease"	“adjust*” OR “adapt*” OR “accept*” OR “manag*" OR "coping” OR "resilience"	MH "Adaptation, Psychological+" OR MH "Self-Management/PF"

Figure 1. PRISMA flowchart outlining process of study identification.

Table 2. Characteristics of the studies included for the synthesis.

First author	Year	Country	Study Aim	Participants	Data collection	Data analysis
Soundy	2019	Oxford, UK	To consider the impact of providing the First Steps program on the stories of people with Parkinson’s Disease (PD) and to investigate the mechanisms which may explain this impact	40 participants; 18 from the intervention group and 22 from the active control group 16 female and 24 male. Mean age 66.7 years. Avg. Mean length of PD 5 years.	Audio record single semi-structured interviews	Narrative analysis to consider the impact of the program. Thematic analysis to consider the established psychosocial mechanisms of impact
Uebelacker	2014	Butler hospital, Providence RI, USA	To identify and understand potential issues of importance to individuals with PDs when coping with Parkinson’s Disease.	75 individuals with PD who were participating in a Movement Disorders Program. 43 male, 32 female. Aged 47–88. Length of PD 0–18 years. Hoehn & Yahr disease stages ranged from 1 to 5	Open-ended surveys	Qualitative data analysis
Plouvier	2018	Nijmegen, The Netherlands	To explore PD individuals with PDs’ coping with care changes	16 people with PD (11 male, 5 female). Aged 58–79. Hoehn & Yahr disease stages ranged from 1 to 4	Audio record semi-structured interviews	Inductive approach to comparative content analysis
Shaw	2017	North Yorkshire, UK	To investigate the current ethical issues in relation to recognizing and managing Parkinson disease (PD) from the individuals with PD’s perspective	12 individuals with PDs living with PD who were from the medical school’s Individuals with PDs as Educators program. 5 female, 7 male. Aged 51–86. Length of PD 11 months–24 years. Disease severity not described	Audio recorded semi-structured interviews	Thematic analysis
Charlton	2002	Bolton, UK	To investigate how Parkinson’s disease had affected the lives of eight participants and explore coping methods they used	8 participants; four of the participants were members of the Parkinson’s Disease Society and four were not. Aged 62–86, length of PD 3–8 years. Disease severity not described	Audio recorded semi-structured interviews	Thematic analysis
Navarta-Sanchez	2017	Navarre, Spain	To explore the meaning that coping with Parkinson’s disease has for individuals with PDs and family carers and suggest the components of an intervention focused on enhancing their coping	21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. Persons with PD: 6 male, 3 female. Mean age 71 years. Mean length of PD 6.1years. Hoehn & Yahr disease stage: mean = 1.5	Audio recorded focus groups (divided by participant group)	Qualitative content analysis
Hellqvist	2018	Linkoping University, Sweden	To identify and describe experiences valuable for managing daily life after participation in the NPS self‐management intervention	25 persons with PD (14 male, 11 female) and 17 relatives. Length of PD <1 year–13years. Hoehn & Yahr disease stages ranged from 1 to 3	Audio recorded group discussions	Thematic analysis according to Braun and Clarke
Smith	2017	Aston, Birmingham	To investigate lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for wellbeing	Individuals with PDs and their partners (total 9) recruited via a Parkinson’s UK support group. 4 PwD and 4 partners, 1 widowed partner. Person with PD aged 67–85, length of PD 2–21 years. Disease severity not described.	Audio recorded in-depth individual interviews in individuals with PD’s home	Interpretative phenomenological analysis
Gardenhire	2019	Lubbock, USA	To investigate how individuals cultivate optimism despite challenges presented by PD	85 first person accounts. Demographic info not collected.	Audio record personal accounts	Grounded theory
Sperens	2018	University Hospital, Northern Sweden	To explore how people with Parkinson’s disease manage the effect of the disease on everyday life	24 people with PD (12 male, 12 female). Aged 46–80. Length of PD 1–19 years. Thirteen reported needing help in ADLs.	Audio recorded semi-structured interviews	Grounded Theory
Den Oudsten	2011	International centres; people with PD from centres in Sweden, Norway and Holland	To identify factors that persons perceive as eminently important for QOL	Participants included persons with PD, caregivers and health professionals. 38 people with PD (15 female, 23 male). Aged 54–74. Disease severity not described.	Audio recorded focus groups (divided by participant group)	Thematic analysis
Eriksson	2013	Värmland, Sweden	To explore and generate an understanding of the meaning of physical exercise in the lives of individuals with PD	11 people with PD (6 male, 5 female) participating in an exercise program. Aged 61–81. Length of PD 2–17 years. Hoehn & Yahr disease stages ranged from 1 to 4	Audio recorded semi-structured interviews	Grounded Theory
Kang	2015	Durham, UK	To explore how people with PD live life successfully and what contributes to this success	8 people with PD (3 male, 5 female). Aged 57–78. Length of PD 2–16 years. Disease severity not described.	Audio recorded semi-structured interviews	Thematic analysis
Lubi	2019	University of Tartu, Estonia	To examine the role of information seeking in the maintenance of existing lifestyle and illness related adjustments	16 people with PD (9 male and 7 female). Aged 35–72 years. Disease severity not described.	Audio recorded semi-structured interviews	Thematic analysis using social practice theory
Nazzal	2017	Irbid, Jordan	To describe the daily living experiences and impact on lines of Jordanian individuals with PD	8 people with PD (4 male, 4 female). Aged 32–76 years. Length of PD 2–14 years. Hoehn & Yahr disease stages ranged from 2 to 3	Audio recorded semi-structured interviews	Thematic analysis
Stanley-Hermanns	2010	University of Texas, USA	To provide a rich understanding of the illness experience of individuals living with PD	14 people with PD (7 male, 7 female). Aged 38–82. Hoehn & Yahr disease stages ranged from 1 to 5	Field data collected from support groups, individual semi-structured interviews using grand tour questions	Thematic analysis
Williams	2008	Bangor University, UK	To understand adjustment and decision-making in day-to-day living with late-stage PD	13 people (10 men and 3 women) and their family carers. Aged 61–89. Length of PD 19–26 years. Disease severity: late (not defined)	Longitudinal semi-structured interviews	constructivist grounded theory and centre-stage storyline generation
Vann-Ward	2017	USA	To identify, explore, and theorize the social and psychological processes used by people with Parkinson disease	15 men and 10 women with PD (ages 40–95). Length of PD 3 months to >30 years. Hoehn & Yahr disease stages ranged from 3 to 5	In-depth interviews, nonparticipant observation, and participant photos, videos, and related document	constructivist grounded theory
Habermann	1996	University of San Francisco	To explore the experience of having Parkinson’s disease in middle life	16 people (9 men and 7 women), aged 42–59. Length of PD 1–16 years. Hoehn & Yahr disease stages ranged from 1 to 3	Audio recorded semi structured interview	Phenomenological framework of stress and coping guided the analysis
Lutz	2017	University of Western Ontario	To deepen the current understanding of the experience of living with Parkinson’s disease and its implications for occupation	6 people with PD (4 men and 2 women), aged 57–73. Length of PD 5–10 years.	Audio recorded semi structured interview using participants’ photographs	Thematic analysis interpreted through narrative theory
Kwok	2020	Hong Kong	To discern the adjustment strategies adopted along the course of illness, from the perspective of Hong Kong Chinese PD patients	14 people with PD (5 women, 9 men), aged 53–84. Hoehn & Yahr Disease stages ranged from 2 to 5	Audio recorded semi structured interview	Thematic analysis conducted in the original Cantonese language, with final themes and supporting quotes translated into English

Table 3. Table outlining the evaluative process using the CASP tool.

Study	Research Design*	Sampling	Data collection	Reflexivity	Ethical Issues	Data analysis	Findings	Value of research	Total+
Soundy	2	3	3	3	3	3	3	2	High
Uebelacker	1	2	2	2	2	1	2	2	Low
Plouvier	3	2	3	3	2	3	3	2	High
Shaw	2	2	2	1	1	2	2	2	Low
Charlton	2	3	2	1	3	1	3	3	Medium
Lutz	3	3	3	1	3	3	3	3	High
Navarta-Sanchez	1	3	2	2	3	3	3	3	High
Hellqvist	1	2	2	2	1	3	3	3	Medium
Smith	2	1	2	1	1	3	3	2	Medium
Gardenhire	3	3	2	3	3	2	3	3	High
Sperens	3	2	3	1	2	3	3	2	High
Den Oudsten	1	2	2	3	3	1	2	2	Medium
Eriksson	3	2	3	2	0	3	2	2	Medium
Kang	2	1	3	3	2	3	3	2	High
Lubi	2	3	1	1	2	1	2	3	Medium
Nazzal	3	1	2	1	2	3	2	3	Medium
Vann-Ward	3	3	3	2	2	1	3	3	High
Stanley-Hermanns	3	3	2	2	3	3	3	3	High
Williams	3	2	2	1	2	1	3	3	Medium
Habermann	3	2	2	2	2	2	3	2	Medium
Kwok	3	2	2	3	2	2	3	3	Medium

*CASP questions.

Research Design - Was the research design appropriate to address the aims of the research?

Sampling - Was the recruitment strategy appropriate to the aims of the research?

Data collection - Was the data collected in a way that addressed the research issue?

Reflexivity - Has the relationship between researcher and participants been adequately considered?

Ethical Issues - Have ethical issues been taken into consideration?

Data analysis - Was the data analysis sufficiently rigorous?

Findings - Is there a clear statement of findings?

Value of research - How valuable is the research?

+Total score was determined according to the range of quality assessment scores obtained, where papers were between 14 and 24 on the total score. The following scale was used:

High - 22–24.

Medium - 18-21.

Low 14–17.

Table 4. Constructing the synthesis through the generation of initial concepts to develop the final themes.

First author	Maintaining a coherent sense of self	Sense of agency and independence	Staying positive in daily life
Uebelacker 2014	Medication as important to help diminish the tremor symptoms and to allow for continued activity Support groups offer social interaction with similar others so one doesn’t feel so alone Practical support allows an individual to maintain independence in others aspects of their life	Physical activity providing benefits on physical symptoms and in helping an individual feel in control over managing the PD	Emotional support helps with reducing anxiety for the future Relaxation techniques, tai chi and massage create a less stressful environment and contribute to relaxation.
Soundy 2019	Acceptance of the PD and being willing to identify PD in social situations helping an individual to continue engaging in activities which mattered to them.	Exercise/physical activity as a way to look after yourself and manage your own wellbeing Physical activity programs helping individuals to become more aware of their own limitations and better able to adapt accordingly The effort of physical activity as contributing to the idea that action could be taken to promote mobility, balance and general health An increase in self-confidence and self-efficacy from the group leading to engaging in more activities and social interaction. The valuable role of information and advice in helping individuals to better understand how to manage their condition	The outcome of social comparisons and taking the messages of others on board in order to have a positive outlook on the future Positive atmosphere of support groups providing a protective mindset against the experience of PD symptoms The ability to relate to other individuals and to compare coping strategies helping individuals to feel better about their own situation.
Smith 2017	The difficulties in accepting the PD causing powerful ontological challenges for the individual The feelings of being “taken over” by the illness leading to PD dictating what one could and couldn’t do.	Finding ways to maintain involvement in activities outside the home to retain a sense of vitality The importance of agency and taking action to overcome barriers in helping one come to terms with PD	Holding onto optimism as a way to find new ways of supporting oneself and adapting to the newfound circumstances. Focusing on the positive aspects of the diagnosis on relationships and experiencing gratitude from those connections. Sense of urgency leading to participants to take up desired opportunities in the present and not the future. Making the most of the situation preventing individuals from becoming overwhelmed by their disabilities and deficits.
Navarta Sanchez 2017	The importance of accepting and coming to terms with the PD in order to adapt and live with the disease Carers supporting the individual to continue previously enjoyed activity.	Getting activity underway as a way to improve symptoms or overcome the difficulties in activities of daily living The importance of information in order to manage the PD and reduce uncertainty	Focusing on the positive aspects of the condition and the way the PD had helped them find new balance in their lives. Living in the present by not thinking about the future; different to not ignoring the future, just not living in the future day to day. Being positive because it’s the only thing one has to face the ups and downs. Negativity as a cause of bitterness, both for themselves and all those around them.
Sperens 2018	The need to adapt occupational performance to accommodate obstacles Reducing expectations of performance-for some an unproblematic matter of fact, for others more troublesome and threatening their identity as a result Maintaining connections with family and friends that were enriching was important to maintain who they wanted to be.	Efficacious medical treatment to manage the symptoms of PD helped individuals feel able to cope Managing time and energy so one could adapt according to daily functioning and activity-this helped to remain in charge of what they did each day Physical exercise to keep up both mobility and wellbeing was an important way of challenging participants and helped them feel more in control. Input from physiotherapists or attendance at a group were important aspects of social interaction and of motivation	Living with PD described as a conscious and demanding strive to achieve satisfactory everyday life Achieving a satisfactory life involved keeping up a good mood and having a good social life Positive thinking for some as part of their personality and the way they had always acted, for others more of a conscious attitude or “act”. The need to stay positive and keep spirits up due to their awareness of the effect of PD on their loved ones. The value of certain places and environments to provide peace, tranquillity and comfort. Places just to enjoy being.
Plouvier 2018	The importance of accepting the inevitable disabilities and limitations in order to search for solutions that minimize the impact on their everyday life	Sufficient knowledge of the disease facilitating the ability to anticipate changes in care. Not being able to anticipate changes in care leading to feelings of lack of control Being able to make independent adjustments, helping individuals have realistic expectations of the post-change situation Knowledge about medication leading to feelings that one can better manage the situation and be “master of your own fate” When individuals were able to solve problems independently, this led to a sense of control over changes to care and the situation afterwards
Gardenhire 2019	The opportunity to listen and understand others’ stories and relate to their experiences, providing an insight into how others cope. Equally, the opportunity to share their own experiences	The confidence to speak out that you have PD and to engage in more activities and social interaction, leading to feelings of self-efficacy and feeling confidence in living well with PD The ability to embrace advice given and take it on board in order to adopt exercise and devote more time to it	The future as possible from listening to experiences of others and taking on board positive messages in order to utilize it in their own life situation The program as providing a protective mindset against the experiences of symptoms and acceptance of their emotions about having PD.
Charlton 2002	The inability to accept physical deterioration leading to vivid fears for the future Not wanting to accept the effects of the PD leading to feelings of loss of identity Acceptance of the condition as crucial to manage the illness; for members of a self-help group, leading to adaptations to their life whereas for non-members, acceptance as something which you just had to do.	The fear of increasing dependence and loss of mobility causing difficulties in everyday living The importance of taking time out and switching activities where necessary in order to deal with tremor and immobility	Social comparison helping the individual to recognize their relatively good fortune Living one day at a time and doing the things which mattered to them before it was too late Maintaining a normal life as possible in spite of the illness Maintaining a positive outlook either by positive thinking or by focusing on the positive aspects of the condition. Dysfunctional cognitions and bias, such as catastrophizing, leading to low self-esteem, low positive affect and negative illness perceptions
Hellqvist 2018	Meeting others with PD helping individuals to find a sense of connection and to feel more comfortable in owning and sharing their experiences Spending time with family as a way to forget about the disease and the symptoms for a while. Accepting the disease as a way to acknowledge the present situation but to live life as well as possible despite the PD.	Long term relations and good access to healthcare staff helping individuals feel more confident in managing PD. Taking ownership of the condition as important in adapting to it Knowledge and advice about PD and medications helping to support decision making around finances and mobility aids Having knowledge and seeking information as a way to understand and manage the changed conditions Inner motivation and participating in a group helping individuals to initiate behaviour change with regard to physical activity and engaging more in self-monitoring	Support groups providing common ground and making participants feel less isolated Support from others providing emotional support and promoting the feeling there was a hopeful and good future. Thinking through situations which cause stress and anxiety and trying to plan to change negative thoughts Actively focused on the small things that generated happiness in daily life, such as acknowledging the good things in life and spending time with friends and family.
Shaw 2017	The importance of disclosure to help an individual to come to terms with the condition and reduce uncertainty related to unexplained symptoms PD diagnoses being given in non-private settings leading to perceptions of it being impersonal and undignified Physical changes due to PD threatening their identity, leading to low self-esteem and worthlessness Medication helping an individual to restore balance with their previous self	Loss of independence as a major challenge for participants yet wanting to take charge of making decisions which impacted upon increasing dependence. Lack of interdisciplinary cooperating amongst professionals causing individuals to feel confused and not in control with their care. The need to balance the provision of information according to an individual’s needs so as to equip individuals to make informed decisions but not overwhelm them in the early stages of the condition
Den Oudsten 2011	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
Eriksson 2013	Individuals aimed to continue to participate in valuable areas of life, even if support was needed for managing to do so. To retain their identity and to be needed by significant others was important to this The importance of being part of a social context where the participants share mutual experiences was stressed by participants in order to generate feelings of coherence	Being able to live independently, such managing daily activities like grooming, dressing, moving around and managing house and garden were essential life goals Confidence in own ability to attain goals and the determination to stay active, despite disease intrusion, were strongly connected with exercising Acting in the best way according to their knowledge, beliefs and experiences enabled the individual to take as much responsibility and command of the body as possible Exercising meant slowing or preventing progression of not only symptoms of the disease, but also the disease itself	The rational decision to try to think positively to try and make the best of the situation Having gratitude that their body functioned in a “normal” way in order to maintain wellbeing.
Kang, 2015	Successful living as being able to live the usual life that they had before having PD. Participants rated their level of success by comparing between their pre-illness life and current life with PD Pretending one had not been diagnosed with PD which seemed to be a positive psychological response at the earlier stage of illness The importance of personal effort and the ability to continue previous activities Positive family support helped participants to manage their illness by being always beside them, being co‐operative, accepting their illness and treating them as normal rather than treat them differently	Participants felt success when their symptoms seemed not to be getting worse and when they became comfortable and competent with their new adjustment to illness The importance of independence and contributing to others’ lives. This seemed to lead participants to believe in their self‐worth and the dignity of their lives An important aspect linked to feeling successful was a sense of being in control Engagement in physical activity and exercise classes as a way to challenge self and maintain health	Having peace with oneself and with life was important in order to counteract social stigma and maintain a positive outlook on life Participants tried to make most of life by being thankful to be alive and loving self and others Social comparison and family support seemed to create positive feelings that they were not left alone
Nazzal, 2017	Many participants had experienced shock, denial and grief. However, all participants stated that once they accepted the diagnosis they started to feel more in line. Family support was reported by participants as an adaptation tool to overcome challenges of the disease and to accommodate the disease process into their lives	Decreased independence and difficulty in performing a wide range of areas of occupation was the biggest challenge Sense of helplessness lead to feelings of hopelessness and depression Information and advice helped individuals to take action to manage their condition Participants reported that lack of communication with the physicians was a common practice. The delay in diagnosis at one hand, and lack of knowledge about the disease and its symptoms and treatment on the other hand, had forced some to try some natural alternative and folk remedies Independence and taking charge of own activity was important.	Feelings of comfort from faith helping individuals to feel they could overcome the challenges
Lubi 2019	The difficulty in accepting future deterioration, making joining a PD society difficult The need to hold onto previous lifestyle and activities related to it in order to feel better The need in the early stages to continue existing practices to prove they are “normal”. In the later stages, hiding symptoms in every possible way. Acceptance and knowing limits supporting individuals to tolerate reduced capabilities and continue in interrupted activities	Individual information-seeking making it possible to maintain control over information and its inflow Autonomous searches for other information and solutions were carried out despite acknowledgement of the rules of the medical system Understanding of the benefits of exercise in promoting wellbeing and the need for individual responsibility Lack of information can mean questions are unanswered leading to decreases or abandonment in agency
Stanley-Hermanns	Individuals had to accept the fact that PD will never go away in order to incorporate the PD into their perception of the self There was an ongoing tension between preserving the self and releasing aspects of the former self in order to reconstruct a self which integrated PD	The need to continually assess wellbeing and determine daily activities accordingly, allowing individuals to continue doing things which mattered Listening to their body helped to manage and negotiate daily living	Many individuals described gratitude for their current state Reflecting on how they were still themselves despite the PD helped to maintain a sense of integrity Support groups helped individuals to feel less alone
Williams	In order to make sense of their present, individuals had to build on past relationships, identity and events in order to reconstruct the everyday in the light of PD Focusing on past events helped individuals to provide continuity between previous relationships and a shared sense of identity with partners and professionals Biography and previous life experiences helped individuals to shape their identity in the face of PD	Individuals needed to feel a sense of control over late-stage PD by maintaining daily activities, medication regimes and interests. Taking control of routines was essential and involved participants developing expertise of their symptoms Medication helped individuals to stabilise their symptoms and maintain independence In order to maintain a perception of independence, individuals avoided seeing other PD individuals with PDs with more advanced symptoms, fearful of their own dependency	Finding meaning helped individuals to focus on living in the present whilst fighting the PD Individuals were determined not to focus too much on their fears for the future
Vann-Ward	Participants were determined and creative in efforts to maintain their identities and fulfill responsibilities Participants redefined themselves as accommodating the parkinsonian symptoms. Acknowledging losses of past identities was a means of coming to terms with their circumstances Participants examined and adjusted former interests to accommodate what they were no longer able to do Participants strove to be engaged in daily life. Most people became involved with volunteer activities; this helped them to maintain a sense of purpose and sense of self	Individuals took responsibility for own care; they actively monitored their health and showed proactivity regarding treatment due to beliefs that their efforts would maintain a sense of self-responsibility, delay symptoms, and improve their condition Individuals made independent decisions regarding how and when to take prescribed and non-prescribed medications Independence of activity was likewise important, such as planning how one would travel when driving was no longer possible	Relief and gratitude that their condition was not more serious Having the ability to relinquish negative relationships and nurture others. New relationships providing companionship and feelings of closeness. Renewed energy and motivation from Parkinson’s dance groups Becoming more understanding of others less fortunate than themselves and developing greater self-tolerance
Habermann	The diagnosis necessitated acknowledgement and acceptance of the disease, but often this was experienced alongside feelings of anger and denial Individuals faced a major demand of moving from being overwhelmed to acknowledging the illness as their own Loss of identity as a working person was a major struggle for participants Changes in role and reinterpreting responsibility was a necessary task within the family	Many began to view their body as uncooperative. The mind had to control the body, instruct it, and try to get it to cooperate Participants identified a need to know about the disease. After a few years of diagnosis, individuals confronted the limits of formal knowledge and began to acknowledge that they knew best re managing their condition Practical knowledge involving timing, dosage and side effects of medication was invaluable Equally important was learning how diet and activity influenced functioning Ongoing monitoring helped individuals deal with the unpredictability of the disease Being unable to drive and giving up working were sources of feelings of dependence	Being able to ask for support and receive support from others were key adaptive tasks in managing the demands of the illness
Lutz	Participants focused on the need to accept PD as part of their reality and how they saw themselves Some strove to maintain their sense of continuity with their pre-PD self and being a person with PD New leisure engagements were important for reconstructing sense of self amidst life transition	participants developed ways to facilitate their engagement in self-care tasks, connecting the importance of these tasks to maintaining a sense of independence Adaptations to physical activity helped individuals to maintain control over their identity	Social comparison with people of other diseases helped individuals feel lucky for having PD Photos often represented the positive memories and appreciation whilst living with PD Participants were appreciative of remaining cognitive function
Kwok	Progressive loss of function and mastery; PD symptoms, such as tremor, slowed movement, rigidity and postural instability, were severely detrimental to their mobility and daily activities, difficult to accept the incurable and progressive nature of PD The PD threatened their roles and personal identities. They were overwhelmed as their lives were interrupted. The resultant role changes owing to the illness greatly jeopardise their self‐esteem and personal identity, especially for those who were still working Forced acceptance: No matter how much they wanted to reject the PD diagnosis, participants eventually realised and acknowledged the reality of living with PD. They tried to make sense of their situation in the context of their lives for consequent identity formation.	Participants were eager to seek information about PD via different sources, such as searching information online or joining educational activities and/or patient support groups held in the community Acceptance as motivation to take a more active and engaged role in illness management, with the hope of maintaining self‐care functions for their own and their family’s sake.	PD symptoms induced significant emotional disturbances in the form of anger, annoyance, torment and a sense of hopelessness and helplessness Participants described unattended emotional needs, in which they verbalised feelings of isolation, fear, frustration and sadness. Such sadness was aggravated by feeling disconnected and a lack of understanding from family and friends

Figure 2. Sense of self adjustment model.