The social impact of Parkinson's is difficult to capture in quantitative research given the condition's variable presentation. Moreover, disability is a complex concept that is based, according to the International Classification of Functioning, Disability and Health (ICF), on the interaction between the subject's health condition and personal and environmental factors (World Health Organization (WHO), 2001) including all the possible psychological and clinical implications (Giardini et al, 2013). Consequently, a quantitative approach may not be sufficient as a methodology to describe disability and deal with the issues of Parkinson's, since it captures little of a person's lived experience (Van Der Bruggen and Widdershoven, 2004) and little of the interconnected psychosocial and medical reality of the disabling implications of Parkinson's.
Therefore, a qualitative approach may be the best method to increase health professionals' understanding of the subjective experience of people living with the condition (Hariz et al, 2011; Valcarenghi et al, 2018). Over the past 10 years, only a few qualitative studies have provided a global view of Parkinson's based on patients' subjective experiences (Williams and Keady, 2008; Chiong-Rivero et al, 2011; Valcarenghi et al, 2018).
The aim of the present study was, therefore, to explore how people with Parkinson's experience living with the condition over time, using a grounded theory approach in order to gain insights that could be useful for clinical practice (Corbin and Strauss, 2008).
Methods
To improve the quality of the study and facilitate understanding, the authors adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al, 2007).
Design
The study design was based on face-to-face semi-structured interviews carried out according to the qualitative approach of grounded theory methodology (Corbin and Strauss, 2008). Interviews were conducted during the first days of hospitalisation and transcribed verbatim. People with Parkinson's were admitted for a 4-week multidisciplinary intensive rehabilitation treatment (MIRT) (Frazzitta et al, 2012; 2015). MIRT consists of three daily sessions of physical therapy and exercise, five days a week, for 4 weeks; this rehabilitation method has been fully described in previous articles (Frazzitta et al, 2012; Pierobon et al, 2014; Frazzitta et al, 2015; Giardini et al, 2017).
Sample
Data consisted of 27 recorded interviews with Parkinson's inpatients. Inclusion criteria were:
Exclusion criteria were:
The 27 inpatients with Parkinson's interviewed in this study constituted a sub-sample of a larger group. They were consecutively enrolled for the purpose of this study until saturation according to the grounded theory methodology (Corbin and Strauss, 2008). The wider sample is described in a previous study focusing on the impact of dysexecutive functions and mood on rehabilitation outcome (Pierobon et al, 2014). The present study should be considered original research: none of the interviews reported here were presented, in whole or in part, in the previous study, notwithstanding the same sub-sample of persons was involved.
Ethical considerations
The study was approved by the local scientific committee and institutional review board and was conducted in accordance with the code of ethics set out in the Declaration of Helsinki (World Medical Association, 2013). Written and voluntary informed consent was obtained from all patients before taking part in the study. Patients' anonymity was also guaranteed.
Interview and qualitative data analysis
Before study recruitment, a pilot version of the semi-structured clinical interview, based on field knowledge and clinical experience, was conducted by senior clinical psychologists (AP, SC, AG) on four people with Parkinson's. They investigated areas of the final version covered: Parkinson's knowledge and acceptance, everyday life, relations with family and friends, and future expectations.
In the main study, one audio-recorded semi-structured interview was conducted with each participant on a one-on-one basis by a senior clinical psychologist (SC, AG or AP) and was transcribed verbatim by trainee psychotherapists. The interviews each lasted around 30 minutes. Patient recruitment for interviews ran parallel with data analysis until there was sufficient saturation of the categories to satisfy the requirements of theoretical sampling (Corbin and Strauss, 2008).
The data were analysed using the qualitative methodology of grounded theory (Corbin and Strauss, 2008). First, an open coding procedure was carried out by MM, reading line-by-line the verbatim transcriptions of each interview in order to underline the main themes and concepts reported (Corbin and Strauss, 2008). In the second step, axial coding, all authors read and re-read the transcriptions and collectively discussed them, identifying the main categories and subcategories (Corbin and Strauss, 2008). Finally, through selective coding, the authors proceeded to construct a comprehensive explanation accounting for the phenomenon analysed (Corbin and Strauss, 2008). This was done through a constant comparative method according to grounded theory (Corbin and Strauss, 2008) until a theoretical framework explaining the Parkinson's stages was reached.
Quotations, exemplifying salient concepts, were reported without identifying information to guarantee both data trustworthiness and anonymity. Moreover, throughout the entire analysis process, constant debriefing sessions, memos, diagrams and maps were used.
Results
The main characteristics of the study sample are reported in Table 1 (mean age: 70.3±8.5 years; years since diagnosis: 8.3±6.9). Of 40 inpatients enrolled in a previous study (Pierobon et al, 2014), 27 people with Parkinson's were consecutively selected for interview (this was the number at which saturation was reached of the three categories that emerged).
| Patient code number | Age | Sex | Marital status | Education (school years) | Main caregiver | Years since diagnosis | Hoehn-Yahr class |
|---|---|---|---|---|---|---|---|
| 11 | 78 | Female | Widow | 12 | Daughter/son | 6 | 3 |
| 12 | 71 | Female | Married/partner | 4 | Daughter/son | 7 | 3 |
| 13 | 75 | Female | Married/partner | 5 | Partner | 6 | 3 |
| 14 | 76 | Male | Married/partner | 11 | Partner | 2 | 3 |
| 17 | 56 | Female | Widow | 5 | Daughter/son | 5 | 3 |
| 18 | 72 | Female | Married/partner | 3 | Daughter/son | 17 | 3 |
| 19 | 72 | Male | Single | 8 | Friend | 7 | 3 |
| 20 | 79 | Female | Widow | 5 | Sister | 12 | 3 |
| 21 | 63 | Male | Married/partner | 10 | None | 4 | 3 |
| 22 | 68 | Male | Married/partner | 13 | Partner | 4 | 3 |
| 24 | 76 | Female | Widow | 5 | Daughter/son | 5 | 3 |
| 25 | 72 | Female | Married/partner | 5 | Partner | 18 | 3 |
| 26 | 81 | Female | Widow | 10 | Daughter/son | 5 | 3 |
| 27 | 72 | Male | Single | 17 | Paid caregiver | 14 | 3 |
| 28 | 75 | Male | Widower | 13 | Daughter/son | 28 | 3 |
| 29 | 80 | Female | Married/partner | 8 | Daughter/son | 20 | 3 |
| 30 | 73 | Female | Single | 17 | Sister | 1 | 3 |
| 31 | 73 | Male | Married/partner | 17 | Partner | 3 | 3 |
| 32 | 64 | Male | Married/partner | 13 | Partner | 1 | 3 |
| 33 | 59 | Male | Married/partner | 22 | None | 2 | 3 |
| 34 | 60 | Male | Married/partner | 6 | Partner | 1 | 3 |
| 35 | 63 | Male | Married/partner | 17 | Partner | 5 | 3 |
| 36 | 79 | Female | Widow | 4 | Daughter/son | 1 | 3 |
| 37 | 55 | Male | Married/partner | 20 | Partner | 4 | 3 |
| 38 | 79 | Male | Married/partner | 8 | Partner | 15 | 3 |
| 39 | 76 | female | Widow | 5 | Daughter/son | 2 | 3 |
| 40 | 50 | female | Married/partner | 17 | Partner | 8 | 3 |
The three core categories were past, present and future. Interviewees continually moved back and forth between these time periods in their descriptions of living with Parkinson's disease (Figure 1). Parkinson's, seen through the eyes of the individuals affected, can be conceptualised as a process where the person, in the present time, goes back in their mind to the past and/or projects mentally forward into the future. During this ‘journey’ individual experiences related to living with Parkinson's are described, perceived both as ‘resources’ and as ‘hindrances’. The person with Parkinson's experiences a progressive impoverishment and a loss of control that implies the perception of mental and physical obstacles not experienced before the onset of the condition. At the same time, social support, the ongoing search for autonomy and positive acceptance of Parkinson's are seen as resources to use in coping with daily life.
Living with Parkinson's is described as intrinsically characterised both by a sense of limitation and by the presence of resources that change over time. Indeed, after the diagnosis, life drastically changes and it is not the same as before: the time dimension emerges as a central theme among the interviewed individuals since the experience of living and coping with Parkinson's is continuously in a state of change. The diagnosis of Parkinson's has altered people's lives, consequently leading them to re-read the past, readjust the present and rethink the future. Therefore, the significance of living with Parkinson's as expressed by the people in the interviews could be interpreted as their experience of multiple and changing resources and hindrances over this timeline.
The quantitative results of the qualitative analysis are presented in Table 2.
| Category | Identification code numbers of patients who mentioned this aspect of Parkinson's | Total | Male | Female | |
|---|---|---|---|---|---|
| Past | |||||
| Reappraisal of previous experiences, comparison of past and present | 11, 12, 14, 17, 19, 21, 22, 26, 28, 31, 33, 35, 39, 40 (these mentioned this specifically; all referred to it tacitly) | 14 | 8 | 6 | |
| Diagnosis impact | Skepticism and confusion | 24, 25, 26, 32 | 4 | 1 | 3 |
| Sadness and shame | 22, 29, 31, 34 | 4 | 3 | 1 | |
| Present | |||||
| Symptomatology | Pain | 12, 13, 19, 21, 24, 27, 28, 29, 32, 33, 34 | 11 | 7 | 4 |
| Tremor | 13, 14, 17, 18, 19, 20, 25, 30, 32, 34, 35, 36 | 12 | 5 | 7 | |
| Stiffness | 17, 18, 21, 27, 34, 35, 37 | 7 | 5 | 2 | |
| Bradykinesia | 12, 19, 22, 26, 29, 30, 33, 34, 36 | 9 | 4 | 5 | |
| Freezing | 17, 20, 21, 26, 27, 28, 29, 36, 37, 40 | 10 | 4 | 6 | |
| Fatigue | 17, 22, 26, 29, 31, 39 (though implied by all interviewees) | 6 | 2 | 4 | |
| Falls | 11, 18, 24, 26, 29, 39 | 6 | 0 | 6 | |
| Loss of autonomy | All | 27 | 13 | 14 | |
| Acceptance | Serene | 13, 19, 20, 21, 26, 27, 30, 31, 33, 35, 37, 38 | 12 | 8 | 4 |
| Unavoidable | 14, 18, 25, 27, 28, 29, 34, 39 | 8 | 4 | 4 | |
| In progress | 11, 12, 22, 32, 33, 36, 40 | 7 | 3 | 4 | |
| Family and social network | Source of discomfort, embarrassment | 17, 25, 28, 29, 32, 34, 35, 40 | 8 | 4 | 4 |
| Source of physical and moral support | 11, 12, 13, 14, 18, 19, 20, 22, 24, 25, 26, 27, 28, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39 | 23 | 12 | 11 | |
| Source of conflict and misunderstanding | 17, 29, 40 | 3 | 0 | 3 | |
| Matter of concern | 13, 14, 18, 25 | 4 | 1 | 3 | |
| Worried about being a burden on the family | 17, 20, 26, 29, 35, 39 | 6 | 1 | 5 | |
| Future | |||||
| Positive approach | 12, 19, 27, 31, 32, 33, 34, 37, 38, 40 | 10 | 8 | 2 | |
| Worry | 11, 17, 25, 29 | 4 | 0 | 4 | |
| Resignation | 14, 17, 19, 30, 32, 35, 36 | 7 | 4 | 3 | |
| Denial | 13, 20, 21, 24, 28, 29, 30, 39 | 8 | 2 | 6 | |
Past
The past is the time dimension linked to experiences that occurred before the diagnosis of Parkinson's, which were overturned by the communication of diagnosis. Previous experiences and psychophysical potentialities, once taken for granted, are now regretted, when comparing ‘before’ and ‘after’. Diagnosis is a breaking point that declares the beginning of a new life, which has been imposed and not sought. Two interviewees to the study commented:
‘I was shocked. I went out there and I said “She [the doctor] is crazy!”… but she was telling the truth.’
‘Previously I managed to do everything … I had hobbies, now I have had to interrupt all of them.’
Present
The present time is neither a memory nor a potentiality: Parkinson's fully expresses itself in the present. Four sub-categories characterised as a resource or hindrance emerged from the data: symptomatology, autonomy, acceptance, and family and social network (relatives and friends).
Physical and functional symptoms related to Parkinson's (such as pain, tremor, stiffness, bradykinesia, freezing, fatigue, and falls) were perceived as a hindrance. These aspects cage the person with Parkinson's in a body that becomes gradually consumed, more and more alien and uncontrollable. Movements and autonomy were limited, impacting on many daily life activities. Interviewee comments included:
‘… A pain as a burning fire…’
‘Sometimes I look like a robot that goes around the house.’
‘I'm tense like a violin string.’
‘I have unpredictable arrest of movements and suddenly have to stop.’
‘I get tired doing anything.’
Parkinson's undermined the interviewees' self-sufficiency, determining a loss of autonomy. Interviewees described being forced to depend on other people in order to carry out often simple tasks. They felt that to depend on others was like giving in to the condition. Indeed, there was in the background an ongoing ‘search for autonomy’, considering the safeguard of independence as the ultimate goal. One patient explained:
‘[The biggest problem is] not being able to do things by yourself, I have to depend on others. I want independence above all.’
The acceptance process is complex. Nevertheless, it is possible to recognise three acceptance modalities that can help or obstruct. First of all, many interviewees described serene and positive attitudes towards existence, finding the strength to embrace Parkinson's with positive and peaceful acceptance (serene acceptance). Considering a person's entire existence, without focusing only on the last painful periods, may permit a positive balanced view of life. One interviewee said:
‘If I were twenty, to be told that there is no cure would have been a serious problem, but at my age sooner or later we all must deal with chronicity…’
For others, the acceptance process was experienced as something one had no choice but to submit to (unavoidable acceptance). Finally, some interviewees explicitly stated they were not able yet to fully accept the pathology but were working on it (acceptance in progress):
‘I adapt … I accept certain things because they are of necessity.’
‘I struggle to accept it. I hope it won't degenerate so quickly.’
It is important to underline that no patients were in denial about their condition. The need to accept was always present, regardless of whether it was serenely embraced from within, imposed, or still in progress.
Parkinson's may affect the social sphere and the individual is forced to reconsider and re-establish relationships with the outside world (family and social network). Visible symptoms may create discomfort, embarrassment, fear of social stigma and of being a physical and emotional burden. One interviewee said:
‘I am ashamed to go around moving like a robot.’
Concern for the family is also present because the interviewees felt they could not take care of their loved ones as they did before. Moreover, there can also be conflicts and misunderstandings, eg family members could think that individuals are lazy or that they are pretending, as one interviewee said:
‘[Parkinson's] gives the impression that I pretend to be ill.’
Nevertheless, an individual's social network, and primarily family members, were often a source of physical and moral support in Parkinson's management, and can be a resource to help the person cope in daily life. Two interviewees commented:
‘They do what they can to help me … despite everything, they are here.’
‘I feel helped a lot and I would say even understood.’
Future
Four different visions of the future emerged from the interviews, which can represent resources or hindrances.
Positive approach
People embracing a positive approach focused more on what can still be done and not on what has been lost, placing attention on the residual capacities and not on the disadvantageous comparison with the past. One interviewee said:
‘If the disease would remain as it is, I would be quite happy, even when suffering.’
Worry
On the contrary, others reported concerns about their future, focusing more attention on the degenerative nature of the condition. Not being able to know exactly how their Parkinson's will evolve was linked to uncertainty and fear, as one interviewee explained:
‘Now I am fine, it's not really serious, now I'm self-sufficient. And then I think: how will I be tomorrow? … And then, will I be able to live alone? … That scares me!’
Resignation
Some interviewees considered the future with resignation—they had few expectations and desires concerning their health condition, apart from the hope that their condition would not deteriorate further:
‘I adapt, I haven't great future prospects, I just hope it will not get worse.’
Denial
Finally, some individuals did not think of the future; they preferred not to consider the barriers to be faced and chose rather to neglect difficulties:
‘I don't want to break my head before time, when the time comes I will see.’
‘When I'm alone at home, I take out my clothes from the wardrobe and I fold them again and again, just to do something, just not to think about it [the future].’
Discussion
This article describes what living with Parkinson's means based on the narratives of people with the condition. The core categories were past, present and future—three different but interconnected dimensions of time in which Parkinson's determines different and changing hindrances or resources according to the person's perception.
‘Hindrances’ represents the changing obstacles that have to be faced during daily living. ‘Limitations’ is the umbrella term to underline the experience of finding some tasks impossible, both from the point of view of physical functionality and of social and relational aspects. As the condition progresses, Parkinson's can become a material barrier, a condition that has been described as enslaving the subject (Sunvisson and Ekman, 2001). At the same time, it is possible to recognise positive and functional elements that can turn into resources that help the person deal with the disabling condition and face daily life.
Time is a central theme for those who live with a debilitating, chronic and incurable condition (Van Der Bruggen and Widdershoven, 2004; Williams and Keady, 2008; Ellingsen et al, 2015). The passing of time evokes contrasting and sometimes uncontrollable reactions and feelings (Ellingsen et al, 2015; Plouvier et al, 2018). People with Parkinson's are conscious of the passing of time as it is experienced in their body. They are aware of the contrast between their past and future (Smith and Shaw, 2017). Their identity is structured within a timeline and it has to be redefined and rebuilt as the disease progresses and affects their physical abilities (Vescovelli et al, 2018). Understanding this process of constant physical and mental adaptation may aid health professionals when caring for a person with Parkinson's. It is important to be aware that their needs will change over time, and practising empathic listening and understanding and supporting their changing needs is key (Plouvier et al, 2018; Valcarenghi et al, 2018;). Understanding the person's perspective may help health professionals adjust treatments and care to suit the individual, while being aware that the patient is often forced to live ‘one day at a time’ (Valcarenghi et al, 2018: 274).
The past is defined by memories of what the person was able to do before the onset and diagnosis of Parkinson's. A revaluation of previous experiences and prior psychophysical abilities, once taken for granted and now regretted, takes place (Van Der Bruggen and Widdershoven, 2004).
The present is the time dimension in which the person experiences hindrances moment by moment. Symptomatology is the main feature that characterises the present for people with Parkinson's. Mobility and physical symptoms are often the main concerns (Valcarenghi et al, 2018; Vescovelli et al, 2018). The person becomes the recipient of unpredictable ‘bodily attacks’ (Smith and Shaw, 2017). The person's body is ‘first something one is, then something one has, and finally something one no longer has’ (Van Der Bruggen and Widdershoven 2004). The concept of hindrance in the present time is also portrayed in the loss of autonomy.
A sense of independence and autonomy are rooted in human beings and are themes of significant concern for people with Parkinson's (Van Der Bruggen and Widdershoven, 2004; Williams and Keady, 2008; Chiong-Rivero et al, 2011; Giardini et al, 2017; Vescovelli et al, 2018). Having Parkinson's has been described as being like a ‘bird with a broken wing’ striving to endure despite the loss of autonomy (Smith and Shaw 2017). For other patients there is a determination to achieve as much autonomy as possible, which helps them cope with difficulties (Vescovelli et al, 2018).
Human beings have a complex and difficult relationship with chronic disease (Pierobon et al, 2011). Learning to accept a diagnosis of Parkinson's can be particularly difficult. Each person has a different reaction, related both to their personality and to their life history. However, in the study sample there was never any denial of the reality of Parkinson's, probably due to its undeniable concreteness (Giardini et al, 2017). The need to accept the condition can be traced back to the concrete nature of the symptoms—there is no choice but to come to terms with the condition, whether in a functional or dysfunctional way. Hence helping to maintain the person in the ‘here and now’ is one of the most important psychological interventions a health professional can make to help them find anchorage in a realistic self-realisation in which they are aware of what they can still do (Pierobon et al, 2011).
Family members and friends are both an important source of moral and physical support as well as a ‘barrier’ (WHO, 2001). The causes of this duality are various: patients' discomfort and shame at showing their fragility, guilt feelings about being a burden to their loved ones, as well as the social stigma, or the caregiver's dualistic attitude towards the patient (Sunvisson and Ekman, 2001; Van Der Bruggen and Widdershoven, 2004; Chiong-Rivero et al, 2011; Maffoni et al, 2017; Valcarenghi et al, 2018). Therefore, the individual with Parkinson's is continuously searching for a balance in a difficult paradoxical play of ‘keeping contact, keeping a distance’ (Van Der Bruggen and Widdershoven, 2004).
A person's concept of the future and plans for the future will have to be changed abruptly and in an unwanted manner after diagnosis. For the person who lives in the present, the future implies expectations that could be positive or negative, so sometimes plans are not made due to the unpredictable nature of the health status. Coming to terms with the future is personal, complex and demanding (Smith and Shaw, 2017; Valcarenghi et al, 2018). The vision of the future may reflect subjective coping styles and personal factors, which warrant further study.
Limitations
Study findings on the subjective experience of chronicity in relation to Parkinson's may be biased by the method of the subjects' enrolment in a single centre and sampling. However, the study was strengthened by the use of the basic principles of grounded theory, as well as by the in-depth analysis and the constant revision through critical discussions during frequent debriefing sessions by the researchers.
Conclusion
What emerges from the present study is the experience of time lived by individuals with Parkinson's. Physical, mental and relational aspects, both positive and negative, may affect personal identity and the intimate meaning of life, as well as the understanding of the disease over time. Taking into account these subjective aspects, it is possible to view Parkinson's as a condition spanning three stages (past, present and future) that can be dynamically crossed back and forth by the person. During this life voyage, the person's resources and hindrances are in a continuous state of change.
Understanding how people with Parkinson's experience living with the condition may help healthcare providers to anticipate the changes that will occur during as the condition progresses (Plouvier et al, 2018). As a consequence, health professionals may be better able to advocate programmes aimed at functional management and provide adequate support and care to individuals and caregivers as their needs change. The interviewees' subjective experiences revealed in this study may help to guide health professionals to adapt their caring activities to their patients' needs, in order to offer an individually tailored healthcare service for people with this complex, continually changing condition.