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

Abstract

Purpose

Parkinson’s disease (PD) is a condition which causes significant difficulties in physical, cognitive and psychological domains. It is a progressive condition which people have to live with for a long time; consequently, there is a need to understand what contributes to individual adjustment. This review aimed to answer the question “how do individuals adjust to PD?”

Method

A systematic search of three databases (MEDLINE, CINAHL and PsycINFO) was carried out of papers documenting the adjustment process when living with PD and the findings were synthesised using a meta-ethnographic approach.

Results

After exclusion based on eligibility criteria, 21 articles were included and were assessed for quality prior to analysing the data. Three main themes are proposed relating to the process of adjustment: “maintaining a coherent sense of self”, “feeling in control” and “holding a positive mindset”. Although many of the studies described challenges of living with PD, the results are dominated by the determination of individuals to self-manage their condition and maintain positive wellbeing.

Conclusion

The results highlight the need to empower patients to self-manage their illness, mitigating the effects of Parkinson’s disease and supporting future wellbeing.

IMPLICATIONS FOR REHABILITATION

• Individual identity disruption impacts on the self-value and sense of self coherence in individuals living with Parkinson’s disease.

• Healthcare professionals should appreciate the complexity of the adjustment process which is related to the ability to maintain a coherent sense of self, to feel in control and to hold a positive mindset.

• Healthcare professionals should ensure information and knowledge related to self-management is tailored to an individual’s understanding and experience of the disease.

Keywords:

• Adjustment
• meta-ethnography
• Parkinson’s disease
• psychological support
• quality of life

Introduction

Parkinson’s disease (PD) is a debilitating, progressive neurological condition normally diagnosed after the age of 50 although onset at a younger age is possible. The prevalence of PD is between 100 and 300/100,000 population and due to the general aging of the population, the number of PD patients is expected to double by 2030 [1]. The symptoms of PD are wide-ranging, but individuals typically start with motor difficulties including tremor, rigidity, bradykinesia, and loss of postural reflexes [2], although other physical symptoms commonly experienced include excessive saliva and dribbling, urinary urgency, and constipation [3]. Cognitive symptoms are also common and in later stages many individuals can experience dementia [4]. Such symptoms frequently cause difficulties for an individual to carry out daily activities and may contribute to activity limitations [4]. Furthermore, psychological difficulties are also common. The most commonly experienced psychological difficulty in PD is depression; although prevalence rates vary widely, the average prevalence is about 35% [5]. Anxiety is also frequently experienced, the reported current prevalence rates ranging between 12.8% and 43.0% [6]. Anxiety and depression co-occur quite often and there is evidence to suggest that anxiety may cause a significant deterioration in physical symptoms, which may in turn exacerbate anxiety [7]. Psychotic symptoms can also be experienced by individuals with PD, typically manifesting around 10 years after the initial diagnosis [7]. Estimates of the prevalence of psychotic symptoms in individuals with PD vary from 15% to 52% in those who receive treatment [7]. In the early stages, psychosis in PD typically occurs with a high level of insight, and psychological support can be sufficient in managing symptoms. However, psychotic symptoms are typically recurrent and likely to worsen over time, resulting in significant anxiety and increasing the likelihood of social and functional impairment [8]. Additionally, apathy occurs in approximately 40% of individuals with PD [9] and can occur independently of depression and cognitive impairment [10]. Psychological difficulties and quality of life in people with PD vary according to gender, with women often having more positive disease outcomes with regard to emotion processing, non-motor symptoms and cognitive symptoms [11]. Although prevalence of PD differs across ethnicity, where it has been shown to be highest among Hispanics, followed by non-Hispanic Whites, Asians and then Blacks [12], the severity of anxiety and depression has not been observed to differ across ethnic groups [13]. Additionally, whilst age does not seem to be a predictor of disease severity or disability, quality of life is significantly worse in young onset than in older onset individuals and they also report greater perceived stigma, life disruption and depression [14]. It is clear that both the prevalence and the psychological burden of PD do not affect individuals equally; nevertheless, the research highlights the extensive impact of psychological difficulties on excess disability, worse quality of life, poorer outcomes and increased caregiver burden [15–17]. In this context it is essential to better understand how individuals develop the ability to adjust despite both the motor and psychological challenges.

Despite growing literature in the area, there is still little consensus on what constitutes psychological adjustment, especially with regard to individuals living with a chronic illness. Typically, literature has framed the concept as both a state and a process. Adjustment as a state is the outcome of an individual’s process of adaptation. Optimal adjustment is when the person manages to balance the difficulties of their condition with a good quality of life [18], resulting in good physical, cognitive and emotional functioning [19]. The state of adjustment is normally defined according to objective measurement such as low negative affect and maintaining function, but this may not necessarily reflect subjective considerations of an individual [20]. Additionally, defining adjustment this way implies that poor adjustment can be considered a mental health problem [21] yet this perspective is not seen as helpful in many people with a chronic illness. As such, defining adjustment as a state is limited in its ability to address the complexity of adjusting to living with a chronic illness.

In contrast, defining adjustment as a process enables one to consider the idiosyncratic nature of how an individual adapts to a chronic illness, which considers how this process may not be captured by functional outcomes [21]. Considering adjustment as a process acknowledges how adjustment is likely to be condition specific and that the adaptive tasks required in adjusting to a condition will vary according to the specific illness challenges. Furthermore, the presence of negative affect may at times be an understandable and even adaptive consequence of deteriorating function, as long as this negative affect is not prolonged [21]. It is important that our understanding of adjustment acknowledges the fluctuating and on-going nature of the process, rather than considering adjustment as a static factor defined by outcomes. As such, adjustment in this review was based on the Moss-Morris (2013) model of adjustment. This model defines adjustment as the process by which an individual is able to return to equilibrium in following specific illness triggers (such as when one receives their diagnosis or in the case of physical deterioration) or maintain equilibrium in the face of day to day illness [21]. Equilibrium involves factors such as good illness management, positive affect and less illness interference on an individual’s roles and relationships [21]. Adjustment in this sense is a dynamic process, as factors which may be successful for adjustment at one stage of disease severity may no longer be successful with advancing deterioration. This is especially relevant in PD, given in the latter stages motor control and active problem-solving strategies may be rendered impossible by worsening of symptoms. When we take a more nuanced focus on aspects of the adjustment process, we can move beyond consideration of individual experience of the condition, the symptoms and the treatment effects, to a more interpretive understanding of how the condition-and crucially too its progression-fundamentally affects the perception of the self.

Previous meta-syntheses of qualitative studies have aimed to explore the subjective experience of PD [22,23]. An earlier review aimed to identify factors which may influence an individual’s wellbeing or feelings of hope and highlighted the importance of individuals with PD retaining their pre-illness identity and maintaining normality as far as possible [22]. Adjustment was considered to involve individuals acknowledging something was wrong and accepting both the diagnosis and its implications for their identity. Similarly, a more recent review by Rutten and colleagues developed a holistic model of the subjective experience of PD from the individual’s perspective and the factors which contribute to this experience [23]. This review added a valuable contribution to the literature on how individuals adjust to PD, where the authors described how individuals with PD undergo a process of identifying whether their core self-beliefs can be maintained in the context of their condition. Where previously held beliefs about the self can be assimilated with condition specific limitations, equilibrium is assumed to occur. As suggested by the aforementioned Moss-Morris model, the authors clearly articulate aspects of the adjustment process in PD. Although both earlier reviews help to inform what might contribute to an individual’s adjustment process, the theoretical orientation of the papers were on the experience of PD, whereas the current paper focuses specifically on the adjustment process. With its narrower focus, the present review can more fully articulate aspects of the adjustment process not accounted for by the Rutten review [23].

Aims

The purpose of this study was to address gaps in the existing literature by systematically identifying, analysis and synthesizing the evidence on adjusting to Parkinson’s disease. Specifically, the review aimed to answer the question of “How do individuals adjust to living with Parkinson’s disease?”

Methods

A meta-ethnography was chosen because it is an approach which not only synthesises information but also seeks to broaden conceptual knowledge, as was the aim of the present review [24]. Meta-ethnography was developed by Noblit and Hare following their perceived failure of existing approaches to synthesis to preserve the context of the individual studies and their recognition of the importance of this context in shaping the findings of a study [24]. The approach of meta-ethnography is therefore informed by an interpretive rather than aggregative intent [25].

This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [26] and followed the seven-step process detailed by Noblit and Hare [25]. These are as follows: getting started, deciding what is relevant to the initial interest, reading the studies, determining how the studies are related, translating the studies into one another, synthesising translations, and expressing the synthesis.

Identifying relevant papers

The first stage of the meta-synthesis was “getting started,” which involved exploring the existing literature on individuals living with PD; this informed the identification of the precise focus of the review in highlighting the limited existing literature. Following this, relevant papers were identified by searching three databases: MEDLINE Complete, CINAHL and PsycINFO. Following guidance from an academic librarian, the search involved three areas: (1) qualitative approaches, (2) adjustment and (3) Parkinson’s disease. Table 1 details the search terms employed.

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"

Inclusion/exclusion criteria

Inclusion criteria for papers to be selected were: (1) used a qualitative approach to data collection (i.e., an approach which aimed to understand people’s beliefs, experiences or attitudes and generated non-numerical data [27]) (2) peer-reviewed, (3), written in English (4) focused on the experience of the individual with PD rather than a caregiver, and (5) at least one major theme (or concept) focused on the process of adjustment. There was no requirement as to the date the paper was published and thus all papers held by the databases were eligible for inclusion. Exclusion criteria were: (1) focused on adjustment after deep brain stimulation, (2) a comparative or dyadic study where the experiences of the individual with PD could not be clearly extracted (3) focused on adjustment of aspects not specific to the condition e.g., coping with menstruation in individuals with PD and (4) the focus was solely on barriers to optimal adjustment. Papers were excluded if they solely focused on barriers to optimal adjustment because the focus of the review is on the process of adjusting, not the difficulties of living with the condition. These are two distinct entities, and the converse of the challenges of living with PD cannot be assumed to contribute to adaptive adjustment to the condition.

Articles focused on the experience of living with PD were included if they described some of the processes which helped an individual to reach the outcome of “living well” (e.g., [28]) but not merely if they only depicted the outcome of an individual’s adjustment (e.g., [29]).

Search results

The original search was conducted in June 2020 and was updated in December 2020 and again in March 2021. An alert was set up within the databases which provided monthly updates of any new articles which would be identified by the original search, of which there were none. The most recent search identified 1923 articles across all databases-a total of 882 remained after duplicates were removed. The remaining papers were appraised for relevance based on the title and abstract. 828 were excluded because they were unrelated to the research question or did not meeting eligibility criteria. 54 papers were accessed in full, either because the abstract suggested potential relevance to the research question or because there was insufficient information to exclude them based on eligibility criteria. Of these, 33 were excluded; 19 did not meet the inclusion criteria and 14 met exclusion criteria. This resulted in 21 articles being identified as being of relevance for inclusion in the review. Table 2 details the characteristics of the included studies. The process from initial searches to final identification of review articles is outlined in Figure 1.

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

Quality of the selected studies

Although not initially outlined as part of Noblit and Hare’s guidelines, the studies were assessed for quality using the Critical Appraisal Skills Programme (CASP). The use of critical appraisal tools is contentious, with some arguing that quality appraisal is never compatible with qualitative research methodology [30]. However, if we are to use the findings of qualitative research to inform clinical practice, we need to be confident that the research is of a good enough quality [31]. Although there is much debate about how, or whether, to assess the quality of qualitative research [30], quality judgments are always made, and appraisal checklists can bring some transparency to this process. Given the use of quality assessment is cautioned, and the lack of agreement about what high quality qualitative research looks like, the CASP checklist was used to support critical engagement with the studies but not used to exclude any individual studies. The CASP checklist enables researchers to assess the trustworthiness, relevance and results of published papers and is widely used in clinical research (CASP, 2019). Assessing the quality of the papers using this checklist involved identifying the standard of methodological reporting and study robustness and focused on three key areas: validity of the research, rigour of the findings, and utility of the results. Studies were assessed based on eight appraisal questions and each question was given a score of one to three; one point was scored for weak explanations of a particular issue, two points were assigned to items which were addressed in the article but not fully elaborated upon and three points assigned to articles that extensively explained the issue at hand [32]. The total possible score for the CASP is 24; articles in the present review ranged from 14 to 22, with the majority of papers scoring between 17 and 22. Table 3 outlines quality assessment scores for each paper. The first author conducted the quality appraisal and then consulted with a colleague who conducted their own appraisal, to ensure consistency in the approach. Following this, discussion was had around where differences lay regarding individual scores and an agreed total score for each paper was determined. Differences between the decisions mainly centred around the requirements of papers to meet each score on the individual items. Higher quality articles typically gave a more thorough description of the data collection and analysis process and produced a more detailed account of their consideration of the ethical issues. Considering the final themes, each sub-theme was present in at least two of the three strongest papers and thus no subtheme depended solely on the weaker papers.

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.

Analysis

The translation followed the process outlined by Noblit and Hare [25]. There are three possible types of relationships that guide translation and subsequent synthesis. The first of these is reciprocal, where similar concepts across the studies are translated into one another and overarching metaphors are revealed which provide explanatory power for the individual studies. The second type is refutational, where more elaborate translations are developed which uncover the relation between the main accounts of a study and competing explanations, or explore incongruences between studies. Finally, line of argument synthesis involves uncovering the larger inference which is implicitly conveyed in the studies but is not explicitly stated i.e., identifying the full picture from the individual pieces. The proposed model of adjustment, articulated in the findings, was developed during this line of argument synthesis and attempts to draw together the studies into a unified account of adjustment. Additionally, the concepts of first and second order constructs, developed by Britten [32] following initial conceptualisation by Schutz [33], were used to guide subsequent analysis. First order constructs reflect the participants’ interpretations to the original questions asked within a single study. Second order constructs reflect the author’s interpretations of the participants’ responses. Finally, third order constructs reflect the researcher’s interpretations of the original author’s interpretations. A meta-ethnographic approach rests upon these third order constructs, which allows for an interpretative account of the shared concepts in adjustment rather than merely combining themes together [32]. Each paper was read and annotated in detail, with key concepts drawn out for each paper, reflective of second order constructs [33]. Consideration was also given to divergent concepts and how these might reflect either aspects of the concept which were difficult for some individuals to achieve e.g., acceptance, or how a broader definition of the concept might capture such refutations. The key concepts were then synthesised to generate three key themes, the third order constructs, which seemed to capture the important aspects of individuals’ experience. This is detailed in Table 4. The first author undertook the analysis, but this was refined in discussion with the second and third authors which helped to maintain the quality of the original findings and uphold methodological rigour [34].

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

Findings

In synthesising the 21 papers, three main themes relating to how individuals adjust to living with PD were constructed: (1) maintaining a coherent sense of self, (2) feeling in control and (3) holding a positive mindset. The model in Figure 2 encompasses these three themes and proposes the relationship between these themes. Central to this model is the process of maintaining a coherent sense of self; a key aim of the adjustment process is to achieve equilibrium, in which an individual’s understanding of themselves is maintained alongside negotiation of the physical and cognitive limitations of PD. Maintaining a coherent sense of self is supported by both internal and external processes which enable an individual to feel in control and to hold a positive mindset.

Figure 2. Sense of self adjustment model.

Theme 1: maintaining a coherent sense of self

Maintaining a coherent sense of self felt to be important for individuals to adjust to the challenges of PD and to accommodate changes where necessary. There appeared a temporal dimension to this process. The early stages of the illness involved an individual’s initial recognition of the chronicity of their illness and what it meant for their identity. This involved understanding its progressive and terminal nature and acknowledging how on-going deterioration might limit their ability to continue with valued roles and activities. Individual responses were often aimed at preserving aspects of their pre-illness self, with the support of friends and family being crucial in this, in supporting them to do the activities they had always done and in encouraging them to retain valued roles. In later stages of the illness, given on-going deterioration in physical and mental ability, it was often not possible to maintain many aspects of their pre-illness identity. Here, acceptance provided the context for reshaping identity to incorporate the illness, in order to allow for positive self-evaluation and maintaining a coherent sense of self in the face of progressive deterioration.

Sub theme: support from friends and family

The support from friends and family was important in helping an individual to retain a valued social identity and maintain a coherent sense of self, finding the aspects of themselves which may initially have been lost following physical deterioration:

…. with the help of caring and supportive family members, a few special friends, doctors, and my husband I have been back to moving and finding my groove [35].

Despite some deterioration in their physical ability, family members enabled an individual to continue valued activity, reinforcing the coherence of their sense of self rather than someone whose identity had changed as a result of the diagnosis [28,36]. Furthermore, by helping individuals with practical aspects of the condition such as daily planning or cooking, partners helped individuals with PD to maintain independence in the activities which mattered most [35,37–39]. 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]. 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 [41–43].

Support groups were one forum where an individual gained friendship which encouraged a coherent sense of self. Coherence was provided by opportunities which allowed individuals to reinforce and confirm the experiences of themselves which mattered, such as through participation in enriching activity and offering reciprocal support [35,42,43].

In helping others find theirs, I have created a purpose for myself and the amazing thing is I found that I began to enjoy life more! It was not just a service for others; it became a pathway to regain my lost dignity and optimism, and sense of value as a person [35].

Despite disruption to their sense of self as a result of the illness, individuals were able to re-establish coherence by providing support to others and maintaining purpose and valued social activity.

However, support groups were not always helpful in supporting an individual’s adjustment to the condition [44,45] and their helpfulness or not likely depended upon whether meeting others with PD facilitated the maintenance of their sense of self. If seeing others with the condition generated incongruence between the person’s understanding of who they were and their understanding of the self as “a person with PD,” then it was likely to impede the adjustment process. As described by one individual:

I have seen the future in the eyes, faces and activities, or inactivities, of my fellow Parkinson sufferers who are in more advanced stages of the disease than me. I can picture myself sitting paralysed in a wheelchair unable to communicate, in pain because my back is hurting, and no one knows that I need to lie down. Or unable to watch television because no one knows they have given me the wrong spectacles and I cannot tell them [44]

Sub theme: acceptance

Where an individual’s pre-illness self-image was no longer congruent with PD related changes, acceptance of the diagnosis and illness limitations was required to adjust to their condition. This allowed individuals to maintain a coherent sense of self despite alterations in their identity. The diagnosis for many was perceived as an emotional force which changed their identity and challenged fundamental aspects of themselves [45]. Individuals faced a major challenge of moving from being overwhelmed to acknowledging the illness as their own [41]. 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].

For many individuals, acceptance involved modifying their expectations of what they were able to do, incorporating their disease related limitations into an identity which accommodated illness changes. The metaphor “like a bird with a broken wing” highlights how participants accepted the things they were no longer able to do in order to adapt to the newfound circumstances [4]. There was an ongoing tension between preserving their current sense of self and releasing aspects of the former self [39,48] to adjust to a self which integrated “the broken wing”. 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.

Indeed, some studies reported accounts of individuals who felt forced into constructing a new identity [50,51] or of hiding their symptoms away [39]. Individuals who found acceptance more difficult often experienced poorer psychosocial adjustment [37]. Consequences of not accepting the disease often meant an individual not being able to maintain their sense of self and experiencing PD as a threat to their identity.

Where individuals were required to adjust to increased dependence and progressive deterioration, fears for their future and low self-esteem were challenges which they often had to contend with [48]. Loss of major roles was also a major challenge for the participants, where interviewees described having to make decisions about their ability to do things because they were no longer cognitively able [37,48,51]. The uncertainty of PD and the daily challenges it raised meant that individuals were no longer able to pursue their previous lifestyle and contributed to frequent reminders of their PD status [49,50]. As one individual acknowledged:

I knew that I’d read it was long term, but I couldn’t absorb that, er and really accept it and I had a close member of family who’d been an auxiliary nurse, who knew exactly what it would lead to who didn’t tell me, but I could tell from their facial expressions when talking about Parkinson’s er that they, it, there was something more to it than just an illness that would go away [4].

The phrase “more than just an illness” highlights the powerful and pervasive nature of the diagnosis, which felt to take over all aspects of their identity; in many respects, too consuming to absorb or accept into their pre-existing identity.

Theme 2: feeling in control

Feeling in control helped individuals to retain a sense of agency despite the illness limitations. Undertaking self-management of their condition was one way in which individuals gained back a sense of control while living with PD. In order to feel able to self-manage their condition, information and resources were necessary to provide individuals with the required knowledge and expertise.

Sub theme: self-management

Feeling able to self-manage care was an important component of feeling in control. Learning self-management techniques helped an individual to feel they had a greater understanding of their situation and thus strengthened feelings of being control:

…and this education as a whole has helped me to take on my illness in a more powerful way. Maybe it’s because I’m relatively newly diagnosed…for me…this education gave me hands-on tangible things to do for myself. That felt good for me [46]

Feeling in control and of owning responsibility for management of symptoms were stressed as important across many of the studies [4,45,52,53]. This was often not easy to achieve, especially given the progressive nature of the condition. In PD, the adjustment process is transitory, and feeling in control is a recurring process which one has to maintain throughout the course of the illness. This is articulated in the following extract:

It is deteriorating, getting worse and worse. The most miserable thing is that I have to deal with the worsening situation, and I have to deal with it again and again… Every time when it gets worse, regarding the progressive nature of the illness, it made me feel in the middle of nowhere. But I still have to bear it… I have to bear it every time [37]

In referencing the “middle of nowhere”, this participant alludes to the sense of losing control over their life with no way out, given the impossibility of gaining primary control over the progression of symptoms.

When primary control of PD is not possible given the unknown and fluctuating course of the disease, feelings of secondary control (i.e., the ability to control the psychological impact of circumstances) were important to maintain some sense of self-efficacy. Even previously mundane tasks such as maintaining the physical environment were described as valued tasks in helping to occupy individuals in a way which contributed to their feelings of self-efficacy:

Taking care of the house keeps me busy, I enjoy doing woodwork and there is always something to attend to. [42]

In many of the studies, individuals with PD actively monitored their health to tailor the management of their symptoms [45,46]. Regarding medication, individuals made independent decisions about how and when to take prescribed and non-prescribed medications, often listening to their body to determine medication needs [40,43,45,48]. Listening to the body often resulted in confrontation with the limits of formal knowledge and the acknowledgement that the person knew best in managing their condition. Medication helped individuals to stabilise their symptoms and maintain independence [37,41,42], allowing individuals to feel “master of [their] own fate” [54]. Despite being an external way of managing physical symptoms, taking medication allowed individuals to feel they had control over their condition and gave them agency in practical aspects such as dosage, timing, and the management of side effects [41].

Sub theme: information and resources

Information and resources were important for individuals to feel in control of their condition. Individuals reported how information about the medical aspects of PD were particularly useful in helping them to feel in control of their care [36,42,47,52]. Unfortunately, even in later studies, individuals still reported they often received little information from their healthcare professional or received information which was delivered without due regard for the impact which disclosure might have on the individual [41,51,54]. Furthermore, lack of knowledge about the disease and its symptoms had forced some to conduct autonomous searches for information and try alternative solutions, to satisfy their “need to know” [37,41]. Limitations of a service such as having insufficient resources and lack of professionals’ time were reported as making it difficult to ask the right questions, leading to concerns remaining unanswered and decreasing agency [4,40]. The progressive and fluctuating course of the disease, experienced differently in every individual, could create mystery and uncertainty which may be amplified by lack of knowledge [41,48].

In contrast, participants who received regular contact from healthcare professionals really valued the support that was offered, describing it as sensitive to their needs and making them feel able to manage their condition [46]. Sufficient knowledge of and education about the disease could facilitate anticipation of change and could help individuals to feel more in control of their condition [36,40,42,54]. This sense of agency was important in helping individuals to feel better able to overcome the barriers of PD {50]. In empowering individuals to self-manage their condition, many individuals agreed that resources from healthcare professionals helped them to feel more capable of adjusting to PD [36].

It seemed that the utility of information in supporting people’s self-management efforts depended upon whether it contributed to congruence with the individual’s social role [36,40,44]. Information which focused on symptom management could be in conflict with the needs of the individual with PD, who may have been aiming to maintain their existing social roles as far as possible. Expected behaviours about what people should do often ignored an individual’s understanding or needs, and where the benefits of new behaviours were not clearly articulated, individuals preferred to maintain existing social roles.

Theme 3: holding a positive mindset

Having a positive attitude enabled individuals to experience positive wellbeing despite the challenges raised by their condition. Social comparison-both upward (looking to others functioning better than oneself) and downward (reflecting on the worse situation of others) helped individuals to reflect on their ability to cope. A related concept, gratitude, helped individuals to value the things which they appreciated and valued in their life.

Sub theme: social comparison

The ability to make both upward and downward positive social comparisons seemed to be important in helping individuals with PD to achieve a positive mindset. Self-help support groups were one environment whereby individuals had the opportunity to make social comparisons [35,42,44]. Members of self-help groups were able to utilize the experience of peers to make a positive downward social comparison and reflect on their relatively good fortune [44,46]. Downward social comparisons were reflected in statements such as “There is always someone worse off than me” [46]. For many, reflecting on the worse situation of others could help to keep their own situation in perspective and facilitate emotional coping [38]. Strengthening self-image through downward social comparisons allowed individuals to adjust to their own situation and was experienced regardless of their own degree of impairment [46,49].

Participants were also able to make positive upward social comparisons to find inspiration and optimism from well adapted peers who had experienced PD for significantly longer duration [44,52]. By gaining inspiration from others who were coping well, broadening knowledge of PD management or heightening gratitude of their current functioning, social comparison helped individuals to maintain positivity [52]. This positivity translated into individuals perceiving their future as possible [35,52], with individuals realising that illness changes could be managed observing the positive and encouraging outcomes of peers [52].

Sub theme: gratitude

In many of the studies, participants described how having gratitude helped them to maintain a positive mindset and facilitated their adjustment to the PD [39,53]. Having gratitude for present functioning facilitated the ability to place high value on the activities participants were still able to do, which translated into individuals feeling less burdened by their activity limitations [50,53]. In the early stages of disease progression, individuals could be grateful that their body in some respects functioned “normally,” and thus reflect upon how they were still themselves despite the PD [28,48,49]. Even experiences of tiredness and sweating when exercising or being active were considered positive, and were longed for, since they meant expressions of a healthy body [49]. It also helped individuals to remain active in society, which they described as contributing to feelings of being useful and maintaining high levels of self-worth [28,43].

Gratitude for friends and family was also described in many individuals’ accounts. For instance, kinship and sense of belonging were important sources of wellbeing and helped an individual with PD to reflect on the valued relationships they had despite the changes brought on by the diagnosis [43,46]. As one individual reflected on how their relationship with their partner had changed since diagnosis

I mean we sort of found out that our feelings for each other had multiplied. We’ve got a lot more time for each other. [4]

By focusing on the relationships which they valued, individuals were able to relinquish relationships which were no longer helpful [4,28,46,48]. This renewed sense of focus brought gratitude for valued connections and provided companionship [4,52], hope [35,46,50,55] and feelings of closeness [45].

For some individuals, the sense that they should be grateful for their close relationships felt to be more of an obligatory process, which involved the painful recognition of their own dependence on their partner, alongside a sadness that both the PD and also family members limited what they felt able to do. As one individual describedif I didn’t have him to answer the phone and organise, I’d have never have been able to re-organise this morning…he just liaises, he even buys the birthday cards now, we, which was everything I used to do, in fact he’s taken over me diary, I feel taken over [4].

This extract describes the difficulty which comes with having gratitude for the things that family members assist with, which results in a lost sense of purpose and also perhaps pleasure.

Gratitude for the present seemed to be a way in which individuals were able to live life to the full despite the challenges faced living with PD. Many of the individuals living with PD described the importance of acknowledging that their future was likely to be associated with symptom deterioration and reduced life expectancy, and the need therefore to live in the present with renewed energy and determination [43–45]. This renewed energy led participants to take up desired opportunities in the present and not the future, thereby leading to the sense that they were embracing the present [4,43,45]. By living for each day, their present became more manageable and they were able to be grateful for the things they could still achieve. For some individuals, gratitude and positive thinking felt to be part of their personality and a natural process, whereas for others it was more of a conscious strategy or through a sense of obligation [42]. Many individuals experienced negative reactions to the initial diagnosis [37,51], but gratitude helped an individual to navigate their path to finding an optimistic perspective [35].

Discussion

According to the findings of a recent review [23], individuals are required to make repeated behavioural and psychological adjustments when living with PD in order to maintain a stable relationship with their self-concept and their environment. This often involves external adjustments which aim to maintain stability such as medical treatment or social support, but also involves cognitive re-evaluation of the self-concept when physical or cognitive limitations mean that restoring/maintaining stability is unattainable. The present review supports the findings about the importance of an individual maintaining their sense of self, either through social support or external adjustments which allow for continued engagement with valued activities, or through accepting their limitations in order to re-evaluate their self-concept to include the PD. Nevertheless, the present review extends these findings, articulating in more detail how an individual is able to achieve stability in their sense of self-through the processes of feeling in control and holding a positive mindset. A key finding from the present review is the way in which individuals experienced PD as a threat to their self-identity, thus maintaining a coherent sense of self was a key adaptive task in adjusting to their condition. This is in line with the Moss-Morris model of adjustment [21] whereby critical events in an illness experience (such as the diagnosis or initial symptoms), alongside on-going illness stressors, disrupt emotional equilibrium and quality of life. The goal of adjustment is to return to equilibrium, thereby reducing the impact of the illness on everyday life. However, the present review describes how maintaining a coherent sense of self did not just involve a restoration of an individual’s previous sense of self, as assumed in the aforementioned model, but also involved altering their sense of self to integrate the PD. This suggests that rather than restore equilibrium or return to previous assumptions, individuals living with a progressive condition need to alter their equilibrium to accommodate illness changes. Williams [55] describes how, when confronted with a chronic illness, individuals need to reconstruct their identity narrative in order to understand the illness in terms of their past experiences and to reaffirm their sense of self as one of purpose and meaning. For individuals living with chronic fatigue syndrome, reconstructing an identity narrative has been shown to be a powerful way in which individuals make sense of their illness and in providing opportunities to connect with other individuals with similar illness narratives [56]. In placing the experience of chronic illness within the framework of their life history, an individual can find meaning to the events which have disrupted and changed their identity [55] and re-establish their relationship between their self, the world and their body [57]. The ability of an individual to reconstruct a narrative which integrates their illness experience allows an individual to maintain a coherent sense of self. In developing a sense of self which not only incorporates but is enriched by their illness experience, individuals may be better able to adjust to their condition.

In order to manage the threat to health and maintain a coherent sense of self, participants in the reviewed studies described the importance of gaining control over their condition. According to the Common Sense Model of Self-Regulation [58], a widely used framework exploring how individuals navigate affective responses to health threat [58], disruption to an individual’s normative sense of self is likely to interact with illness prototypes and activate the representation of threat to health. In the reviewed studies, disruptions to an individual’s usual way of life were often perceived prior to the diagnosis of PD, and the threat of illness often prompted them to seek guidance from a clinician. Seeking professional support and taking action towards understanding their symptoms helped people to gain a sense of control not only over initial symptoms but also the management of their condition. Having a sense of control has consistently been linked to good psychological and physical adjustment to chronic illness [59]. Gaining control over symptoms through self-management (primary control) allowed individuals to feel more in control of their life and better able to adapt to disease related limitations (secondary control). This felt important given the uncontrollable nature of disease progression. Both increased perceptions of primary control [60,61] and secondary control [62] have previously been associated with greater wellbeing and psychological adjustment in individuals with PD. Even if control of disease may not be possible, global life control and feelings of self-efficacy rather than control over the disease per se can also be important [63]. Indeed, in one study investigating perceptions of cause and control in individuals with PD [64], knowledge of aetiology and underlying physiological processes of PD did not contribute to a perception of control, although knowledge supporting management techniques was perceived as helpful. Whether knowledge of the disease contributes to a perception of control is likely to depend upon the individual and the meaning which potential knowledge has for them; including whether it is congruent with their own understanding. According to the Common-Sense Model, clarifying the patient’s illness and treatment representations and ensuring action plans are congruent with these representations is likely to facilitate treatment adherence [65]. Unfortunately, given the limited time clinicians often having with individuals during consultations, conversations are often limited to symptoms and treatment effects [65]. However, exploring the personal factors which might influence the adoption of self-management practices is likely to facilitate treatment adherence. In a study which explored the role which the content of clinical communications may have on treatment adherence, when patients perceived the visit to have a common sense rather than medical purpose (i.e., focusing on treatment monitoring and the individual’s ability to manage their condition, as opposed to patient feelings of treatment effects), visits which were deemed to have a common sense purpose resulted in greater treatment adherence and better management of their condition [66]. Practitioners who give time to explore patient beliefs about when and how to do the treatment and their expectations of own self-efficacy may be more effective at empowering individual self-management because they set the stage for action and evaluation of treatment efficacy [67]. This highlights the importance of ensuring that information and knowledge related to self-management is tailored to an individual’s understanding and experience of the disease.

In line with the Moss-Morris model [21], cognitive factors including gratitude and social comparison were important components for individuals living with PD to hold a positive mindset despite continuing deterioration. In comparing themselves with others and experiencing gratitude for the things one appreciated in life, individuals seemed able to come to terms with their condition. For many, reaching a place of optimism involved a series of emotional stages first including shock, denial and anger [35], situating it as a similar process to that of bereavement. This process of adaptation may be a healthy way in which an individual grieves for the person they once were. In making space for and allowing oneself to experience and share negative emotional experiences with others, individuals with chronic illness may be better able to self-regulate emotions [68]. The ability to hold a positive mindset alongside co-existence of positive and negative emotions is likely to facilitate an optimistic outlook in the face of adversity and adjustment to the challenges imposed by their condition [69].

Clinical implications

In order to improve access to support and provide individualised care, healthcare systems need to be offering a range of interventions which are cost-effective, and high intensity input is not always preferable or desirable. Consequently, the adoption of self-management policies needs to be prioritised in order to facilitate an individual’s adjustment to their condition [70]. Effective approaches to supporting this adjustment requires (1) tailored information which meets the individual’s needs (2) partnership decision making and care planning, (3) support with the social and emotional impact of the condition and (4) education and motivation in self-management [71]. All of these factors emerged from the findings in the present synthesis: decision making and planning which treats the individual as a true partner in their care supports the maintenance of their sense of self; education and information on self-management supports individuals to feel in control and support with the social and emotional impact of the condition helps the individual to achieve a positive mindset. How each of these can be effectively achieved within current models of healthcare delivery met will be explored in turn in the following discussion.

Tailored information which meets the individual’s needs is essential to supporting an individual’s self-management of their condition and key to facilitating the participants’ perceptions of control. Consistency in the information provided by healthcare professionals is important to minimise distress related to confusion about their symptoms and to heighten individual’s self-efficacy in their ability to manage their condition. Several of the studies highlighted incidences where individuals had felt information had been delivered insensitively or without due regard to an individual’s preference in the timing or setting for the delivery. Individuals described being informed of their diagnosis in non-private settings or in an abrupt and impersonal manner [51]. This may reflect the complexity of providing the right information at the right time [72] or reflect clinician’s guilt about their inability to provide a medical treatment or cure, thus affecting their consideration of appropriate manner and timing of delivery [73]. Nonetheless it is concerning, given the importance of individuals feeling empowered through professional support to self-manage their care. Where professionals deliver recommendations without recourse to an individual’s practical understandings or idiosyncratic needs, individuals may feel forced into adopting habits they are not ready to adopt and available solutions can be unsettling [39]. Thus, healthcare professionals need to ensure that the provision of information is tailored to the needs of the individual so that they feel able to make good decisions about their current and future care [51].

Partnership care planning and decision making is also key to individual adjustment, and this requires an integrated approach. An integrated approach including the individual with PD in any decision making is considered the best way to manage PD [74]. This integrated approach should recognise the importance of the availability of supportive others in supporting their self-management approach [75]. Although not fully recognised by current models of adjustment, the role that other people have in encouraging an individual in their self-management and in mediating beliefs about self-efficacy should be more readily acknowledged by healthcare professionals. The self-management of illness is often perceived to be an individual phenomenon yet it is arguably a collective process, taking place within a social context [76]. People who readily engage in self-management practices are often not able to meet their roles and responsibilities within the family, because of the required routines and practises required in most self-management approaches. Individuals are reluctant to involve family in illness self-management because of the way self-management has been framed in healthcare discourse as an individual process, despite the fact that social support and collective adaptation provide environments which promote illness management [77]. This is likely to depend upon cultural perceptions about the importance of family and social networks in supporting adjustment to disease [75] and has been shown to be an important aspect in experiencing success with the illness, defined as the ability to hold on to family lifestyles and usual routines [28]. Early intervention incorporating psycho-education about the management of symptoms, which recognises the social context in which the individual experiences their condition, is important to facilitating adjustment to PD.

Supporting individuals with the emotional and social impact of the condition can be identified in the need expressed by participants to focus their energies on embracing a present filled with purpose rather than a future focused on deterioration. As such, mindfulness-based approaches may be an effective intervention in facilitating individual adjustment to the condition. Mindfulness Based Cognitive Therapy (MBCT) typically takes places over 8 weeks and teaches participants to become more aware of their present thoughts and feelings. It also encourages a more detached relationship with these thoughts and feelings, rather than viewing them as accurate representations of the self or reality [78]. In developing a detached perspective to difficult thoughts and feelings which may arise from living with PD, an individual may be less likely to experience the difficult thoughts as a reflection of their inability to cope and more able to fully engage with their present. Preliminary evidence suggests the experience of mindfulness can help individuals to access inner resources and reaffirm their existing coping ability, enabling them to confront previously avoided social situations and to have more confidence in their ability to self-manage situations which they may have previously avoided [79]. Facilitating this self-management and encouraging individuals to fully engage with their present experience may provide a protective mindset against PD related challenges and an acceptance of the feelings or emotions of having PD. In encouraging individuals to focus on their present and enhancing existing coping ability, MBCT may help individuals to adjust to their condition.

The need to feel motivated and supported in self-management and the acceptance of a readjusted state of health was reflected across the individual studies and healthcare professionals should support this acceptance where possible. Interventions based on acceptance and commitment therapy (ACT) [80] may help individuals to develop acceptance to the changes which PD brings. Acceptance is a stance an individual adopts rather than a process of coping and enables an individual to pursue a life in accordance with their values, despite the limitations imposed by their illness [81]. ACT encourages this accepting stance through techniques such as cognitive defusion, which help an individual to detach from difficult thoughts and in doing so develop more flexible ways of responding to challenging situations [80]. In developing more flexible responses, individuals are supported to lead a meaningful life despite the continual challenges which PD presents. Although there is little evidence for the efficacy of ACT in PD populations, there is evidence that ACT may be effective in conditions such as multiple sclerosis (MS), where greater acceptance of the condition (according to ACT principles) was found to relate to better adjustment [82]. Furthermore, a recent intervention utilizing a trans-diagnostic approach for individuals with chronic illness has highlighted the effectiveness of ACT principles in reducing psychological distress, reducing physical limitations, and increasing valued behaviour [83]. This effect was seen despite the individuals’ evaluation of their health changes remaining the same. It is important that the effectiveness of the intervention was independent of the evaluation of health status, given that the progressive nature of PD means that an individual’s health status is likely to continually deteriorate. The efficacy of ACT based interventions in other chronic illnesses highlights its potential efficacy in supporting individuals with PD to adjust to their condition. Nevertheless, this approach should recognise that the clinical management of PD needs to be different to that utilised in other chronic conditions. Due to the progressive nature of the condition, at some point acceptance of deterioration will become incongruent with beliefs about the self that the individual strongly identifies with. At this point, clinician encouragement to focus on acceptance of the illness and self-management is likely to neglect fundamental aspects of the individual’s experience of the condition, the loss of self. Once external management is no longer compatible with internal belief systems of the individual, a more nuanced approach targeting the individual’s feelings of loss and supporting them through the bereavement process is likely to be required.

Limitations and future research

Conducting a meta-ethnography largely ensures that the experiences of the participants in the individual studies are preserved [32]. Nevertheless, the synthesizing of multiple studies meant that some of the individual experiences may have been lost. For instance, nuances in adjustment which may have reflected differences in disease duration, extent of symptoms and disease severity of individual participants were not considered in depth. Furthermore, the majority of the studies included individuals with PD of either low or medium severity. Although some studies included participants with more severe symptoms, it is likely that these participants represent those individuals who are functioning relatively well despite the severity of their condition. Although recruiting individuals with more severe PD is challenging, future research should aim to explore how adjustment might differ in the more advanced stages of the disease. An additional avenue for future research would be to study in depth the experience of individuals with PD who additionally experience cognitive impairment. Although not discussed in detail in the present synthesis given that few of the included studies involved individuals with cognitive impairment, it is nevertheless an important aspect to consider. It may be expected that cognitive changes would limit an individual’s ability to flexibly adapt their sense of self and to adopt self-management skills, with consequent implications on an individual’s ability to adjust to their condition.

The majority of the included studied were conducted in Western countries and consequently, future research should explore the experiences of adjustment for individuals living with PD in non-Western countries. Culture is arguably the ‘inherited lens’ through which we understand the world around us and how we navigate our experiences within it [76]; it is inevitable therefore that differing cultures will have different understandings of both health and illness. This review has highlighted the importance of an individual’s representation of illness in the process of adjustment to PD, suggesting that adjustment might also differ across different cultural contexts. The generalizability of the research to Eastern populations is therefore limited, although the consistency of findings across epistemological orientations, methodological approaches, countries and healthcare settings suggests some transferability of the results. Nevertheless, a primary aim of the meta-ethnographic approach is to interpret findings within the context of the initial study; as many of the studies failed to provide sufficient contextual detail regarding socioeconomic status, ethnicity, cognitive impairment or living situation of the participants, the contribution of the meta-ethnography is itself limited. Furthermore, all of the studies used a cross sectional design. In contrast, longitudinal studies provide valuable insights on the temporality of the adjustment process and how it might differ according to the trajectory of recovery. Given 21 studies were included in the review spanning differing healthcare contexts and there was considerable overlap in the findings, it is likely that we were able to achieve data saturation. Nevertheless, future research should explore how adjustment differs according to ethnicity, socioeconomic status and disease severity of participants.

The studies were of variable quality, as determined according to the CASP checklist, and this may be a limitation to the findings of the review. Indeed, few studies explicitly commented on issues surrounding reflexivity, failing to fully account for any relationship between the researcher and the participants, or their own influence on the data. This raises questions regarding the validity of the research. [84]. All the authors have a clinical psychology background, with knowledge of neurodegenerative health literature, which inevitably provided a particular lens through which these findings were interpreted. The synthesis was conducted primarily by the first author, who met regularly with the second and third authors, to ensure the themes were credible and grounded in the data.

Conclusion

This review used a meta-synthesis approach to examine individual adjustment processes, with the research question “how do individuals adjust to living with Parkinson’s disease?” Findings from the review indicate the need for individuals to maintain a stable sense of self and feel in control, despite illness changes and on-going deteriorating. Having a positive mindset was also important in helping individuals to experience positive wellbeing. Understanding how an individual adapts to living with a chronic illness is important not only to better understand the full implications of the condition but also so we are better able to offer early intervention for individuals who are finding adjustment difficult. Supporting individuals to self-manage their condition is not only an approach which empowers individuals and their families with the ability to cope in the face of illness, it may also maximise individual wellbeing.

Disclosure statement

No potential conflict of interest was reported by the author(s).