Study selection
After removing duplicates, 14,002 studies were identified, of which 13,905 were excluded based on title or abstract. Of the 97 remaining studies, 87 were excluded after full-text reading, leaving ten studies for inclusion. For further details, see Fig. 1.
Study characteristics
The ten included studies were published from 2004 to 2020, with one study from 2004 (18) and the remaining nine studies from 2014 to 2020. There were three studies from the US (19–21), two each from the UK (22, 23) and Australia (24, 25) and one from each of Sweden (18) the Netherlands (26) and New Zealand (27).
Most of the studies reported a specific purpose – e.g., how patients view the role of their GP (26), or patients’ perceptions of a specific exercise (20, 24, 27) or prevention program (19), or of their perioperative experiences (21).
All studies applied a qualitative design with interview data; one study supplemented this with video recordings (26). Most of the studies used coding and thematic analyses, though one study applied saliency analysis (25), one used grounded theory (24) and one used a constant comparative approach for analysis (26). Details of study characteristics are presented in Table 2.
Table 2
Author, year of publication and location*
|
Aim
|
Design/data collection method
|
Inclusion and exclusion criteria
|
Time and place of interview
|
Sampling strategy
|
Participants’ characteristics
(Sex, Age, Living)
|
Data analysis techniques
|
Shaw, 2017
(UK)
|
To investigate the current ethical issues in relation to recognizing and managing PD from the patients’ perspective
|
Semi-structured interviews / 12 patients
|
Participation in the PAE Program( Patients as Educators)
|
Time range since diagnosis: 11 months to 24 years
|
Interviews until saturation
|
5 female / 7 male
Age range 51–86
|
Thematic analysis, including coding and a thematic map
|
Read, 2019
(UK)
|
To explore experiences of service use and unmet needs of those with late stage Parkinson’s’ who have high degrees of disability
|
Interviews / 10 patients
|
Inclusion:
Diagnosed for the last 7 years ,
stage 4 or 5 (Hoehn and Yahr Scale)
a score of 50% or below (Schwab and England Scale)
Exclusion: dementia, drug-related Parkinson or unable to communicate
|
Time since diagnosis:
mean: 18 years
range. 9–28 years
interviews were conducted at the patients’ place of residence
|
Purposive sampling from the English cohort of the European ‘Care of Late Stage Parkinsonism
|
3 female / 7 male
Mean age: 77 years Living: ordinary housing: 9 / nursing home: 1
|
Thematic analysis using an inductive approach
|
Plouvier, 2017 (NL)
|
To clarify the role community-dwelling PD patients see for their GP in PD care
|
Video recordings graded to reflect patients’ feelings followed by semi-structured interviews
|
Diagnosis of PD
Community-dwelling
No apparent cognitive dysfunction
Capable of handling a video camera
|
Mild stage disease
|
Purposive sampling through GPs (gender and location)
15 patients or until saturation
|
12 patients, 8 male / 4 female
Mean age: 69 years
Community-dwelling
|
Content comparative approach
|
O’Brien, 2015
(Australia)
|
To explore the relationship between the meaning of exercise and other influences that underpinned the exercise behaviour of individuals with PD
|
In-depth semi-structured interviews
|
Participants in a 6-month exercise arm of a falls prevention trial
Idiopathic PD; 40 years or older; ability to walk independently; stable PD medication; one or more falls the past year or in risk of falling
|
Disease duration: 3–11 years
Interviews were conducted in the participants’ home
|
Purposeful sampling
|
8 patients, 6 male /2 female; age range: 64–82 years
|
Grounded theory using an interpretivist, constructivist framework
|
Milligan, 2018
(NZ)
|
To explore the perceptions of participants of … a small group exercise program…
|
Semi-structured interviews in small groups or individually
|
Participation in an RCT and idiopathic Parkinson’s
|
Disease duration: 1–23 years
|
Patients randomised to the intervention group of an RCT
|
21 patients – 13 male / 8 female
Age range: 61–82 years
|
Inductive approach including coding and thematic analysis
|
Greviskes, 2018
(USA)
|
To gain a better understanding of the nature of caring in a secondary prevention program setting form the perspective of individuals with PD
|
Semi-structured interviews
|
18 years or older, sufficient cognitive ability, participation in an SPP for the last 4 weeks
|
Median stage 3 H&Y
|
Patients enrolled in an SPP
|
10 patients – 3 male / 7 female
Mean age 73 years
|
Inductive content analysis
|
Edwards, 2014 (Australia)
|
To explore perceptions of one patient’s hospital experience, identifying what mattered to the patient…
|
A qualitative descriptive approach /case study
|
In-patient
|
Hospitalized for planned deep brain stimulation
|
Ease of recruitment… during hospitalization
|
One 49 year old male patient
|
Saliency analysis
|
Cleary, 2020
(USA)
|
To explore the reasons a group of people with PD continued to regularly attend a community-based group exercise program
|
Phenomenology research design
|
PD diagnosis, H&Y stage 1–3, regular attendee in the program
|
H&Y stage 1–3
|
A predeterminant sample of 25 patients
|
18 patients – 9 male / 9 female
Mean age: 67.3
|
Content analysis
|
Birgersson, 2004
(Sweden)
|
To describe persons with Parkinson’s disease and their partners’ experience of support received
|
Open-ended interviews
|
Confirmed diagnosis of PD, married or co-habiting
|
Disease duration 5–24 years
|
Persons with PD recruited from two out-patient services specialised in care for patients with PD
|
Six couples – of those 2 male and 4 female with PD
|
Content analysis
|
Anderson, 2013
(USA)
|
To hear directly from surgical patients with Parkinson’s disease about their perioperative experiences
|
Descriptive design – interviews
|
Adults with Parkinson’s disease, having elective surgery (not PD surgery), age between 50 and 80 years, a score of 7–10 on SPMSQ
|
Interviews conducted in the participants’ homes
|
|
13 patients – 10 male / 3 female
|
Coding
|
*Location = 1st author affiliation |
The studies included a total of 105 participants with between 8 and 21 participants (patients) per study, with the exception of one case study of a single patient (25). Of the included participants, 64 were men and 41 were women. The mean participant age from nine of the studies was 68.4; Shaw et al. presented only an age range (i.e. 51–86) (23).
While the included studies appeared relatively homogenous in terms of study design and analytic approach as well as gender and age of participants, they were characterised by noticeable heterogeneity in terms of when the interviews were conducted (i.e., during hospitalisation or community-dwelling with participation in exercise programs in primary care); time elapsed since diagnosis (from 11 months to 28 years); and stage of disease (Hoehn & Yahr and/or high degrees of disability/ability to walk independently).
Quality assessment
Although the level of methodological quality varied slightly, the studies were rated positively, with scores between 8 and 10 out 10. However, half of the included studies failed to address the researcher-participant relationship and four failed to describe ethical considerations, particularly regarding information to participants. Nevertheless, we found that the results of each study were applicable and contributed to informing our research aim. In Table 3, we present the appraisals of the included studies.
Table 3
Study
|
Clear statement of aim
|
Qualitative
methodology appropriate
|
Research design appropriate
|
Recruitment strategy appropriate
|
Data collection
addressed research issue
|
Researcher-participant relationship adequately considered
|
Ethical issues taken into consideration
|
Data analysis sufficiently rigorous
|
Clear statement of findings
|
Valuable research
|
Score
|
Shaw, 2017
(UK)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
9
|
Read, 2019
(UK)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
Yes
|
9
|
Plouvier, 2017
(NL)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
Yes
|
9
|
O’Brien, 2015
(Australia)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
10
|
Mulligan, 2018
(NZ)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
9
|
Greviskes, 2018
(USA)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
9
|
Edwards, 2014 (Australia)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
10
|
Cleary, 2020
(USA)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
Yes
|
9
|
Birgersson, 2004
(Sweden)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
Yes
|
Yes
|
Yes
|
Yes
|
9
|
Anderson, 2013
(USA)
|
Yes
|
Yes
|
Yes
|
Yes
|
Yes
|
No
|
No
|
Yes
|
Yes
|
Yes
|
8
|
Thematic synthesis
In Step 1, a total of 39 main themes, 76 sub-themes and 41 additional findings were coded line-by-line and extracted to allow the descriptive themes to emerge (Step 2). In this portion, the aim of the review was set aside to avoid causing our a priori framework and assumptions to influence the analysis. The process resulted in 17 descriptive themes. The number of codes in the single descriptive themes varied substantially, with, for instance, two codes defining ‘The value of patients’ knowledge’, four codes defining ‘Continuity’, and 14 codes defining ‘Physical challenges’ and ‘Individualised treatment, care and rehabilitation’, respectively. However, we consider all codes to be of equal value – and consequently all descriptive themes to be of equal value as well. In Step 3, three analytic themes were generated: Significance of self, Significance of informal caregivers and peers, and Significance of professionals. Findings are presented according to these analytic themes. In Table 4, we list the studies that reported on the themes.
Table 4
Analytic themes identified in each study
Study/Analytic theme
|
The significance of self
|
The significance of informal caregivers and peers
|
The significance of professionals
|
Shaw, 2017
|
Yes
|
Yes
|
Yes
|
Read, 2019
|
Yes
|
Yes
|
Yes
|
Plouvier, 2017
|
Yes
|
-
|
Yes
|
O’Brien, 2015
|
Yes
|
Yes
|
Yes
|
Mulligan, 2018
|
Yes
|
Yes
|
Yes
|
Greviskes, 2018
|
Yes
|
Yes
|
Yes
|
Edwards, 2014
|
Yes
|
-
|
Yes
|
Cleary, 2020
|
Yes
|
Yes
|
Yes
|
Birgersson
|
Yes
|
Yes
|
Yes
|
Anderson, 2013
|
Yes
|
Yes
|
Yes
|
Significance of self
The analytic theme ‘Significance of self’ was composed of the five descriptive themes: adaptation and coping, physical challenges, value of patients’ knowledge, self and mind, and impact of own effort. Although the descriptive themes at might appear diverse at first glance, they all concerned not only the value of the patients’ own efforts but also the importance of adaptation to and coping with their new and constantly changing situation. ‘Coping and adapting’ was in most cases related to the physical challenges patients with Parkinson’s disease experience continuously. One overarching theme was fear of falling, but other challenges were mentioned as well: apathy, fatigue and other health and memory problems such as forgetfulness, hopelessness and hallucinations. A single study reported patients’ wish to be seen as individuals having knowledge about themselves and their disease, and therefore as individuals who sometimes know best regarding the best medication regimen. In other words, they wished to contribute actively to ensure their optimal treatment, care and rehabilitation, and consequently their own wellbeing.
However, the most pervasive descriptive theme within this broader analytic theme was Self and mind, which focuses on patients’ continuous struggle to cope with the changes wrought by PD to their identity, self-reliance and autonomy, as well as their struggle to maintain a sense of self and normality in the face of disability and unpredictability. Many of the patients in the included studies cared deeply about self-efficacy, control and empowerment, independence, and autonomy. They cared about being confident, having high self-esteem, pursuing self-actualisation, and being respected. On the dark side of this theme, patients mentioned the importance of overcoming themselves in order to not be disappointed in themselves and underscored the impact of their own effort both in relation to physical and psychological challenges and also in relation to more concrete training and rehabilitation goals. They hoped for a holistic, lasting benefit, a more active future, physical comfort and functional gains resulting from their undertaking exercise regimes. Overall, this theme is composed of the physical and mental challenges caused by PD and the importance of accepting the inevitable changes and adapting to a new situation.
Significance of informal caregivers and peers
The three descriptive themes Support from peers, Motivation and Support from informal caregivers fed into this analytic theme. Motivation was the most concrete of the themes, revolving primarily around the importance of motivating oneself or being motivated by others to undergo training and rehabilitation as well as the importance of making sense of the exercise experience. Motivation was closely related to another descriptive theme in this analytic theme: Support from peers. This theme revolved around being among equals during training with friends and in comparison with others; gaining strength, inspiration and knowledge; the influence of others; and encouragement received and given within the group. But patients in the included studies also mentioned more relational features, such as shared understanding, socialisation and inspiration, camaraderie between group members, the accountability that came with belonging to the group, an understanding and supportive environment, and experiencing solidarity and community. Furthermore, patients also expressed a desire for empathy (not to be confused with pity), which they experienced among peers who understood the challenges of living with PD.
Last but not least, Support from informal caregivers fell within this analytic theme. This descriptive theme is characterised by both vulnerability due to patients’ dependency and concerns regarding the burdens on their caregiver s. Patients with PD were very much aware of their dependence on their informal caregivers, from whom they received vital support; they recognized the need for caregivers to advocate for them as patients and to act as organisers and mediators regarding contact with healthcare. On the other hand, patients worried that their disease and its attending physical and mental challenges would result in compromised relationships and substantial caregiver burden. Overall, this is a rather complex theme: it captures the joy of being among peers; the dependency on, and need for, help from significant others; and the worry that their caregivers will be burdened by living with a person with PD.
Significance of professionals
This analytic theme was a core theme regarding the aim of this review and a recurring theme in the included studies. It was also the analytic theme with the most codes (97/156). Within this theme, we identified the following descriptive themes: Loss and end of life; Not being met and suffering; Information; Medication; Continuity; Professional professionals; Access to medical expertise; Individualised treatment, care and rehabilitation; and Kindness.
Some of these themes were relatively concrete. Access to medical expertise, for example, covered experiences surrounding the diagnosis, such as the relief in viewing the diagnosis as closure, as well as access to medical specialists when needed. Medical specialists were defined in relation to PD, and the need for expertise changed over time. Thus, this could refer to access to the GP, neurologist or multidisciplinary team, or else acute care if needed. But patients also requested access to help more generally in terms of assisting with their care decisions. In other words, they wished that their GP or other medical specialist would stay in touch with them and be accessible when needed. Another example of a relatively concrete theme was Medication. This theme reflected that patients with PD were quite knowledgeable about their disease and keen to follow a medication routine that suited their particular needs, even if it did not conveniently fit organisational routines. Patients greatly wished for individualised treatment and care and, as a consequence, continuity. Individualised treatment was a broad theme covering the desire for a changing and challenging workout routine and modified exercise programmes to challenge patients as individuals. However, the themes also included a desire for relational individuality, i.e., that healthcare professionals should provide them with one-on-one attention and recall personal details and that care should be tailored and individual. This theme was also expressed in terms of a lack of individualised treatment and institutional inflexibility – patients stated that the fact that they, as individuals, were supposed to fit into the regimented healthcare system was detrimental to their normality, independence, and sense of self. This was again closely related to the theme of Not being met and suffering – a descriptive theme covering both organisational inadequacy (such as lack of privacy and empathy, being offended, feeling misunderstood and humiliated) and also more existential themes such as worthlessness and insecurity. Though patients mentioned information only a few times, this was a key theme, too – both in terms of their desire for sufficient, individualised and tailored information, and also regarding the fact that information helped them cope with their disease (or prevented them from doing so, if the information was not provided). Regarding the behaviour of the professionals, kindness stood out as being particularly important for patients with PD. This was expressed through a number of terms describing helpful caregiver reactions: showing interest and benevolence, creating a supportive atmosphere, asking questions and making patients feel welcomed and supported were all actions that helped provide warmth and a positive experience for patients. Patients with PD wanted a kind staff that was not in a hurry.
The descriptive theme professional professionals represented a variety of codes reflecting what patients with Parkinson’s disease expected – or at least hoped to see – from healthcare professionals. The codes cover treatment, care and rehabilitation, as well as both positive and negative features (i.e., they included what patients did not want from healthcare professionals). On the positive side, patients expressed an overall trust in professional guidance, but they worried and suffered when they encountered a lack of expert knowledge and skills. They deeply wished to be seen by professionals, not amateurs. Regarding treatment, patients mentioned that expertise was of paramount importance in the process of diagnosing PD, while emotional security was most important in relation to care. When patients attended training and rehabilitation interventions, they hoped to meet with physiotherapists who paid attention to them as individuals and who were knowledgeable about how PD affects the body and daily activities. The last descriptive theme within Significance of professionals was Loss and end of life. This descriptive theme dealt with heavier topics, such as suffering through diagnosis, end-of-life decisions, fear of dying, and feeling unprepared for death. When patients went through this phase, they felt a need to sort out their affairs and make decisions in advance. They experienced physical disability, loss of ability and loss of identity, and they sought to focus on not losing more. In going through this process, they desperately needed professional and kind professionals.
This theme can be roughly condensed into three core aspects: the need for timely and sufficient information, the need for professionals that are true professionals and the desire to be met with empathy and kindness.