http://informahealthcare.com/bij ISSN: 0269-9052 (print), 1362-301X (electronic) Brain Inj, 2014; 28(10): 1342–1352 ! 2014 Informa UK Ltd. DOI: 10.3109/02699052.2014.916417

ORIGINAL ARTICLE

Quality-of-life of patients with Parkinson’s disease Linda Dauwerse1, Annette Hendrikx1, Karen Schipper1, Chris Struiksma2, & Tineke A. Abma1 1

VU University Medical Centre, Department of Medical Humanities, EMGO+ Institute for Health and Care Research, Amsterdam, The Netherlands and 2Dutch Parkinson Association, Amsterdam, The Netherlands Abstract

Keywords

Primary objective: To describe factors influencing the QoL of patients with Parkinson’s Disease (PD), as experienced by patients themselves. Research design: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives. Methods and procedures: Interviews with patients (n ¼ 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV). Main outcomes and results: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person’s life differs per patient and per situation. Conclusions: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD.

Parkinson’s disease, patient involvement, quality-of-life

Introduction Parkinson’s Disease (PD) is, after Alzheimer’s disease, the most common progressive neurodegenerative disorder. PD is a motor system disorder, which is the result of the loss of dopamine-producing brain cells. PD usually affects people over the age of 50 [1] and it is clear that PD is age-related, affecting 1% of the population aged 65 and over, although the onset can occur much earlier [2]. Early symptoms are subtle and occur gradually. PD can be characterized by physical impairment [1], neuropsychological deficits [3, 4] and/or psychiatric symptoms such as depression and other emotional changes [1] which influence quality-of-life (QoL). QoL research is a developing field. QoL is defined by the World Health Organization as: ‘Individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’ [6]. Previous quantitative QoL research on PD has provided an important and broad overview of determinants affecting quality-of-life. Research has, for example, been aimed at developing and translating questionnaires, at determining QoL of people with PD (from now on the term patients will be used) and at factors Correspondence: Linda Dauwerse, VU University Medical Centre, Department of Medical Humanities, EMGO+ Institute for Health and Care Research, Amsterdam, The Netherlands. Tel: +31 204448266. Fax: +31 204448394 l. E-mail: [email protected]

History Received 16 August 2013 Revised 9 January 2014 Accepted 11 April 2014 Published online 19 May 2014

that influence their QoL [7–10]. Researchers have developed new standardized questionnaires [11] and used either diseasespecific or generic quantitative questionnaires [12–15]. Examples of PD-specific QoL instruments are the 39-item Parkinson Disease Questionnaire, Parkinson’s disease qualityof-life questionnaire and Parkinson’s impact scale [16]. Examples of generic questionnaires are the Quality-of-Life Questionnaire, the Schedule for the evaluation of individual quality-of-life direct weighing and the World Health Organization Quality-of-Life (WHQOQoL) [16]. A limitation of these quantitative questionnaires and studies is that they often do not focus sufficiently on the experiences of patients and their perspectives on issues that affect their quality-of-life. Factors influencing the QoL of patients may as a result remain undescribed. PD researchers have recognized this limitation and they have, therefore, increasingly used qualitative methods to investigate the lived experiences of PD [17–21]. An example is the qualitative study by Van Oudsten et al. [17] who investigated the perceptions of patients with PD on QoL. Den Oudsten et al. [17] aimed to further develop the WHOQoL framework for PD patients by using focus groups and demonstrated that this qualitative method is a valid and reliable way of eliciting views on QoL from patients [17, 18]. Van Oudsten et al. [17] have added knowledge to the emerging body of knowledge on PD by pointing out (from the perspective of caregivers and professionals) that the

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impact of PD on QoL goes beyond the physical, social and emotional domains of health-related QoL. Their study identified three new themes: (1) practical adaptations to PD, (2) personal adaptations to PD and (3) the ability to communicate and the availability of communication supports [17]. Other qualitative studies showed (1) the severity of the disease and the functional status of the patient [19], (2) depression, disability, motor impairment, postural instability and cognitive impairment [20] and (3) nocturnal sleep disturbance, together with depressive symptoms and severity of motor symptoms, highly influence the QoL of patients [21]. Other qualitative studies have shown that the unpredictability of PD [22], the role of partners [23] and mental and psychosocial symptoms [24] highly influence the QoL of people with PD. What is missing is an overview of all factors influencing the QoL of PD patients and the relation between these factors, formulated by patients themselves. Therefore, the aim of this research is to give an overview of QoL from the perspective of patients with PD.

Methods Study design A transformative qualitative research design is used as qualitative research is most suitable to gain an understanding of the meaning of experiences [25]. The focus of transformative research is on the people’s participation in setting the agenda, participating in data collection and analysis and controlling the use of the results [26]. An important aspect of transformative research is that the sense making comes from the community under investigation. Transformative research emphasizes the role of the researcher as a change agent who establishes conditions for liberating dialogue with oppressed groups and the political production of knowledge [27]. Within this transformative qualitative research design, responsive research was used as a methodological framework. Previous research shows that responsive methodology is a proved method to actively involve patients in research and it provides a practical framework for active patient participation in research [28]. This framework includes the following research phases: exploration, consultation, prioritization, integration, programming and implementation [28]. The philosophical basis of the research approach is hermeneutics. From a hermeneutic point of view interpretation of meaning is not a given and should be continuously subject of dialogue. Every interpretation is based upon pre-understandings which are embedded in knowledge (of how to handle a situation) [29]. As hermeneutics is a theory of experience, the articulation of various aspects of patients’ experiences of living with PD and how this affected their QoL was fostered. This dialogue facilitated a process of mutual understanding through applying and refining ones preconceptions and learning from conversations with fellow patients. More concretely, interviews and focus groups with patients were combined. Interviews are appropriate to give insight into personal experiences and opinions. Focus groups are useful to create deliberations and gain a variety of experiences on the particular topic [30]. Outcomes of the interviews were

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used as input for the focus groups to validate and further refine the findings. Data were collected and analysed in the period between April 2010 and December 2011 in the Netherlands. Research team, voice over group and support The research team consisted of four academic researchers with various disciplinary backgrounds (healthcare sciences, cultural studies, psychology, ethics) and three non-academic research partners (two patients with PD (male and female) and a spouse (male) of a patient with PD). This collaboration increases the interviewers’ empathic understanding of respondents in interviews, which leads to more genuine answers and richer conversations [31, 32]. A voice over group with patients gave feedback on the data, analysis and reports. This voice over group included enthusiastic patients who wanted to have an active role on a structural base in the research and found it important to have a say. An advisory group of seven professionals and six patients monitored the research process and met three times. As taking initiative can be a problem for patients with PD and reading long texts might be hard for them, this study supported participating patients with personal support, working structure, taking enough time and using visual support. This, for example, means that this study reflected regularly on the experiences of the non-academic research partners, used an agenda for all meetings with patients and used pictures and visualizations to analyse the data. Data collection This article reports about the exploration and consultation phase of the framework for patient participation [28] used as the methodology to systematically collect data. Exploration Within the exploration phase, participants were recruited for interviews and focus groups and a quick scan of the literature was completed on Parkinson’s disease. Selection of participants took place via the Dutch Parkinson Association (PV) that placed an advert on their website and in their magazine. Sixty-three PV members responded to the advert, among them 54 patients and nine family members. A purposive sampling approach was used to choose participants that reflected the diversity among patients. This means that the sampling activities began with an exploration of the variety of experiences with QoL among PD patients [33]. Initial selection criteria included age, sex, living environment (rural, urban), onset and duration of the disease, living conditions (single, with partner) and work. As more insight was gained in the experiences after the analysis of a first set of interviews, one could purposefully select and add respondents with other experiences to cover the whole spectrum of the phenomenon [34]. This emergent sampling strategy enabled one to select participants who varied in terms of experiences with QoL. In addition, interviews (n ¼ 9) were held with researchers, caregivers and patients to become familiar with the stakeholder’s issues and to develop a semistructured topic list for the consultation phase.

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Consultation Within the consultation phase the focus was to identify the perspective of patients and to gain an understanding of the issues influencing daily life with PD. Therefore, interviews were conducted and focus groups organized which are described in the following paragraphs. Interviews To understand the issues influencing daily life with PD, 27 interviews were conducted with patients and their spouses. The rationale for selecting 27 people with PD was that it aimed at reaching saturation; the point were no new information is added and repetition occurs. The interviews were, in accordance with patients’ preferences, at patients’ homes and a semi-structured topic list was used (see Table I). This list was developed based on exploratory interviews (see exploration phase) with patients, researchers and caregivers and a quick scan of the literature on PD (including scientific literature and biographies). Participants of the explorative interviews were not a part of the interviews in the consultation phase. The topic list included the following items: experiences with the disease and living with the disease day-to-day; how to deal with the illness and environment; and wishes and dreams about improvements. The topic list was used as a reminder for the

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interviewer. The actual conversation during the interview followed the structure of the interviewee. The interviews were conducted by a duo consisting of an academic researcher and a research partner to gain rapport and depth [25, 30, 31]. The interviews were held in three regions of The Netherlands (north, middle and south) for practical reasons; this enabled the non-academic research partners to join in the interviews by limiting the transportation time and effort. The interviews lasted 1.5–2 hours and were audio-recorded (with permission). All interviewees received a summary as a member check. When interviewees disagreed or made additions, this was integrated within the summary and initial analysis. Interviews were written out (transcribed) for a more detailed analysis. Focus groups After the interviews, the authors searched for new people to participate within the four focus groups with, respectively, six, six, nine and seven participants. In total, 30 participants were involved in four focus groups. An exclusion criterion was participation in the interviews. As an important inclusion criteria for the focus group was that participants were able to have dialogue about QoL on a collective level, voice-over group members were invited in the focus groups. Other advantages of asking members of the voice-over group to participate in the focus groups

Table I. Interview guide with topic list patients. Introduction  Goal interview: discover to what extent the research field around PD connects to the perspective of PD patients.  Own background and information needed.  Confidentiality, member check, duration of the interview, option to take a break. Points of interest during the interview Concentrate on the story of the patient, take enough time to evaluate what he/she told and ask for clarification (for example: ‘you mentioned various things. . . do I understand it correctly that you mean. . .)? Background information Age, education and work, living situation (family situation, living together or alone, age you experienced complaints, age PD was diagnosed, member of Parkinson’s association). Openings questions:  How are you currently doing?  Can you tell about the moment you first experienced complaints? Perception and experience of PD:  Diagnosis of PD (for example, what do you see as concerns, what went well with the diagnosis?)  Level of progressivity (for example. how do you think about it, what do you feel in relation to progressivity?)  Medical treatment/possibilities for medical treatment/medication.  Care received/support (for example: which care is offered? Perception and experience in living with PD Exemplary question: what does the disease mean for you?  Bottlenecks in daily practice (work; hobby’s; mobility)?  Bottlenecks in social contact (friends, family)?  Bottlenecks in own relation/family?  Characteristic story of experience/anecdote? To hear the perception and experience it is good to keep on asking questions. For example with slowness: how does your slowness feel and do you also think slow (mental inertia). With poker face: how do you experience this? How do you deal with responses to this? Strengths to deal with PD  Which solutions did you invent to be able to function? Desires  Possible question: Imagine, you receive a million and would be able to use it for PD, what would you do with it? Expectations  What do you expect from patient participation in research?  What do you expect from this research project? Which contribution could it make? Parkinson’s association  What does the Parkinson’s association mean for you (why are you or are you not a member?)  What would you expect from the Parkinson’s association? Evaluation of the interview:  How did you experience the interview?

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were (1) voice-over group members were familiar with the results from the interviews and could bring in these data; (2) there was continuity between the four focus groups; (3) the voice of engaged patients was acknowledged and a collective learning process started, in line with the transformative design of the research; and (4) these homogenous focus group meetings prepared for heterogeneous focus groups in additional phases. The focus groups were prepared by the whole research team and included the goals of the meeting, the working methods and the preparation for the participants. The focus groups were held at a central location and moderated by two researchers and one research partner. These researchers and research partners were the same people as the ones conducting the interviews in the previous phase. Each focus group lasted for 4 hours, including a break. The first two focus groups were focused on validation and deepening of the interview data. A short story, based on the emerging topics within the interviews, was used as a base for dialogue and participants added new insights like the importance of diversity (besides searching for shared issues) and the impact of taboos (including talking about death). Within the last two (3rd and 4th) focus groups, participants completed, clustered and labelled findings from former phases and within this process again new insights emerged. Within these last two focus groups participants visualized the issues influencing QoL with PD using the interior mechanism of a watch as a metaphor. This metaphor, which is presented and explained in the results section (and is referred to as radar wheel), was recognized by all focus group participants. The academic researchers have adopted this metaphor and asked patients to complete and define all aspects of this metaphor, which ultimately resulted in Figure 1. Within focus group 3, the themes (cognitive-, body and psychological functioning, communication, stress, energy level, coping, image, diagnosis and quality-of-life) were completed and described. In focus group 4, the themes (medication, good care, time, ownership, family, societal contacts, societal services, societal culture, societal position and taboos) were discussed and adapted where necessary. The research team related the findings to this framework. After each focus group a summary of the transcript was returned for comment and correction. Additional comments were integrated into the summary. The focus group participants were compensated for their time and contributions by travel cost reimbursement and a small token. After the series of interviews and focus groups, data saturation was reached.

Co

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Societal position This axis within the middle of the wheel illustrates the central cluster for living with PD (QoL and time). Lubricant (crossing cluster) which drips through the whole wheel (influencing and connecting the outer layer (societal cluster), care cluster, inter- and intra-personal cluster and axis of the figure. Arms of the clock, connecting the lubricant with the other layers These star categories (tracing wheels) are all a part of the inter- and intra-personal cluster. They turn around the axis and influence each other. Care ring: directly influencing the inter- and intra-personal tracing wheels and directly (dripping as lubricant) and indirectly (via theinterand intra-personal cluster) influencing the axis in the middle (QoL). Societal ring: directly influencing the care ring and directly (dripping as lubricant) and indirectly influencing the inter- and intra-personal tracing wheels and axis in the middle (QoL).

Figure 1. Quality-of-life from the perspective of patients with PD.

starts with (specific) data and not with a (general) theoretical framework. In latter stages one may compare the results with existing frameworks from literature, in order to deepen the findings. In this study first all the data from the interviews and focus groups were analysed. At the end of the research process, the results were compared with a theoretical framework which will be explained in the discussion section. This theory was not used in the primary analysis (and did not influence the development of the framework in Figure 1). Figure 1 was developed first, then it was discovered that the theoretical framework as presented in the discussion connected to the results. Quality criteria

Data analysis The interviews were analysed using content analysis [35]. All interviews were, with permission, written out line-by-line (transcripts). All transcripts were read and analysed by at least two team members. The analysis was done by coding and labelling text parts. Those labels were compared and discussed in the research team and later clustered. Afterwards they were again compared and discussed in the research team. Data analysis was an open and inductive process in which one intentionally moved between the diverse data collection methods and collected data. In an inductive analysis one

The techniques of prolonged engagement, triangulation and respondent validation (member check) have been used to enhance the credibility of the research. In this study, prolonged engagement meant that a long-standing and direct relationship was had with the Dutch Parkinson Association and its members. There was an atmosphere of trust and openness during the interviews and focus groups which also contributed to the credibility of the findings. Triangulation refers to the use of multiple data sources and methods and the participation of and analyses by different persons. In this research, triangulation was applied by combining individual

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interviews and focus groups and by involving various perspectives in the analysis. The interviews provided personal experiences and opinions of patients with PD and the outcome of the focus groups was a collective opinion about QoL with PD. These two kinds of data collection differed from each other and completed each other. So, data triangulation enriched insights by using various methods and verifying data from various methods. Respondent validation means that a member check was sent to all research participants, asking them to give feedback. Eventual comments were incorporated. To enhance the reliability, the analyses were performed by multiple researchers and codes and labels were discussed until consensus was reached. Ethical considerations All participants who participated in the study took part on a voluntary basis after having given their consent. Names and other characteristics of the participants were deleted. Their transcripts were not shared with their clinicians or other external parties and the transcripts and tapes were destroyed after the study. Permission was not requested from a medical ethical committee as it was known, from previous, comparable research, that these kinds of research projects do not require ethical approval, as they do not see it as invasive medical scientific research [36].

Results Table II shows that 15 interviewees were patients alone, nine of them included patients and a spouse and in three of them only a family member (as representative for the patient) participated within the interview. Table III shows characteristics of interviewees. The youngest participant was 42 years old and the oldest was 88. They were almost all living at home (n ¼ 25), although the illness was severe on some of them and most of them needed help with daily activities. Complaints they experienced included concentration problems, being overactive, having a bad short-term memory, difficulties with walking and eating, communication problems, hallucinations and being very tired. As a consequence of those complaints Table II. Participants consultation phase.

interviews

Participants

n

Only patient Patient and family member Only family member

15 9 3

they, for example, are almost completely dependent on their spouse for activities of daily living, do not drive a car, do not participate in group conversations or dinners, are dependent on an electric wheelchair and do not work anymore. One spouse, for example, explained that her husband with PD went to a nursing home when she had a vacation. Characteristics of the participants of the focus groups are described in Table IV. Participants of the focus groups were relatively healthy, energetic and had a will to deal well with PD. Compared to the interviewees, more of them were still relatively close to the diagnosis. The data collection resulted in an overview of QoL from the perspective of patients (see Table V). Patients visualized their QoL and its affecting factors in a radar wheel (see Figure 1). The quotes, including the sex, age and onset of PD per participants, are used to illustrate the themes. This inter-related radar wheel consists of several elements and for each patient each element has a different influence. Not only per stage, as the illness progresses, but even per day. Patients indicate that daily QoL forms the heart of their experience. Being a patient means being confronted with PD every hour of the day, every day of the week. This confrontation is about small and (seemingly) unimportant everyday issues, which become large and important. Issues like turning over in bed, dressing, eating and shopping. ‘Before you actually go to work, you have done a day’s work already’ (Man, 54, 2002), one patient said. PD is capricious: one’s condition differs per day and even per moment. As a consequence patients often lack selfconfidence: ‘One moment you can do something and the next moment you can’t do it anymore’ (Man, 63, 1994). Time is an important factor in PD and has several dimensions, namely: (1) the progression of the disease; (2) its chronic character; (3) dealing with the past and the future; (4) the everyday moments for taking medication; and (5) the delay and acceleration in movements. In total the wheel has four clusters which represent different areas of functioning according to patients: inter- and intra-relational cluster, care-related cluster, societal cluster and crossing or transcending cluster (see Figure 1). Crossing cluster: Communication, ownership, taboos and image Figure 1 shows that patients position communication, ownership, taboos and image on the same level. The metaphor used for these issues is lubricant, which drips through the whole wheel. These issues can hinder or facilitate the QoL. Communication not only includes the poker face, but also physical communication, personal communication and information. Speech, language, idea of grammar and linguistic

Table III. Characteristics for participants’ interviews (n ¼ 27).

Table IV. Participants’ focus groups (n ¼ 30).

Age division

Age division

Gender Time since diagnosis Setting

5556 years old 22  56 years old 15 male 12 female 7  3 years 2043 years 25 living at home 2 living in a nursing home

Gender Time since diagnosis Setting

11556 years old 19  56 years old 20 male 10 female 11  3 years 1943 years 30 living at home 0 living in a nursing home

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Table V. Identified research clusters, themes and definitions of patients. Research cluster Intra- and inter-personal cluster

Theme Stress Psychological functioning Family Energy level Physical functioning Cognitive functioning Coping Social contacts

Care cluster Societal cluster

Medication Diagnosis Good care Position in society Societal culture Societal services

Definition of patients Feeling burdened as a consequence of PD and as a consequence of the confrontation with oneself, the changed behaviour and the symptoms or the responses of the environment. Emotional and psychological symptoms caused by PD (primary), as well as emotions and psychological reactions as a consequence of the changes caused by PD (secondary). Support from or absence of partner and/or children. Everything concerning experienced tiredness and change in energy. Experiencing physical symptoms as a consequence of PD. The experience of cognitive symptoms as a consequence of PD. Continuous adaptation. Relationships patients with PD have with family, neighbours, participants in courses and members of hobby clubs. Medication and side-effects of medication in relation to PD. The process before the final label PD (pre-diagnostic phase) and the diagnosis itself. Reducing the disadvantages caused by PD. Patients want to have a meaningful societal contribution, they do not want to be approached disrespectfully. Recognition of PD on a collective level. Aids and work-oriented regulations.

usage (physical communication) influence QoL. Some patients, for example, miss verbal fluency and others have problems with remembering words: ‘My short term memory fails’ (Man, 68, 2004). Others find that they are no longer attractive conversation partners: ‘You do not have an enjoyable chat anymore but sit silently at the table’ (Man, 61, 2009). Contact is more difficult because patients articulate less and speak softly: ‘He is not interested anymore, I think a lot of people think that of him’ (Spouse of man with PD, 68, 2004). For participants, ownership means: having the experience to influence and direct your own life. Patients still want to carry their own responsibility and want to be heard. Changes in ownership lead to various tensions in QoL, like the loss of involvement, independence and autonomy: ‘I am of course very dependent’ (Woman, 79, 2006). As a consequence, patients would like to trust caregivers and spouses because they feel dependent on the knowledge and experience of caregivers and spouses. Image refers to the ideas the public has about PD on the basis of (less or wrong) information, for example from the media. This can lead to an attitude in which patients are not seen as equal citizens. Societal images influence one’s selfperception and perceived level of understanding. A young person with Parkinson’s disease (so-called ‘yoppers’), for example, explains: Because I look young, people do not understand it. They think: ‘who is this fool walking around here’. Because they do not expect it to be due to the disease [PD]. When they think of Parkinson’s disease, they immediately think about older people. They look at you, especially in the beginning (Man, 42, 2008). Taboos play an important role in QoL with PD. Examples are: leaking urine and using a wheeled walker. Shame, fear for loss of face and societal disapproval are the result. Taboos are the opposite of lubricant; a taboo makes the radars stiffer.

Participants indicate they live day-by-day and do not think about the future. This means that the (relatively big risk of) dementia and cognitive problems do not emerge automatically within the interviews. The data indicate that having Parkinson’s disease itself is also a taboo. A participant who is a member of the Parkinson’s association, for example, explains: ‘I think many people have difficulties with the label ‘‘Parkinson’s’’. I do think that, yes, I am almost sure’ (Woman, 55, 2010). Inter- and intra-personal cluster The inter- and intra-personal cluster covers the issues which are directly related to the individual person. They turn and work around the axis and include stress, psychological functioning, family, energy level, physical functioning, cognitive functioning, coping and social contacts. Patients experience stress as a separate radar as it highly influences the QoL. Patients not only see stress as a consequence of PD (primary factor), but also as a consequence of the confrontation with oneself, the changed behaviour and the symptoms or the responses of the environment. From the patients’ perspective, psychological functioning includes emotional and physical symptoms caused by PD (primary), as well as emotions and physical reactions as a consequence of the changes caused by PD (secondary). Examples of primary psychological functioning are: loss of initiative, emotional sensitivity, depression, delusion/ hallucination and fear. Examples of secondary psychological functioning are: shame and feelings of loss. Family (partner, children) is an important radar for patients, as family has a great influence on QoL. In an interview with a woman with PD, her husband and a research partner, for example, the woman explained that it is difficult to stand in a row and shake hands (for example for congratulations or condolences) as this increases the risk of heavy shaking (and even shaking

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with one’s arms and legs). The research partner asks: ‘But you do this?’ (Spouse of woman, 66, 1991). The participant answers: Yes, it is difficult, but I do it because, once I stop, I will never do it again, due to fear. But for me it is clear that when it does not work, my husband helps me and we do it together (Woman, 64, 1978). Energy level includes everything concerning experienced tiredness and change in energy. It is an important symptom of PD which has a huge influence on the QoL. When the energy level is good enough, daily functioning gets better, for instance, one experiences less stress and emotional instability. Therefore, a participant indicated: ‘You have to take advantage of your energy when it is there’ (Man, 61, 2009). A low level of energy involves many other areas, such as loss of initiative. A participant explains: ‘It is a terrible kind of being tired. It is not being tired because of physical effort, but tiredness which comes from within. It makes me very insecure’ (Woman, 79, 2006). The lack of energy also concerns activities like eating, going out and walking. Another participant noted: ‘Sometimes it is easier for you to reconcile with your condition; at other times you need a kick in the ass’ (Woman, 61, 2007). Physical functioning means experiencing physical symptoms as a consequence of PD. Several examples of physical complaints were mentioned, like shaking, moving a lot and losing physical control, disturbance of balance and freezing, choking, poor articulation and being soft-spoken and problems with eating, leaking urine, masked face and staring. Cognitive functioning is defined by patients as ‘the experience of cognitive symptoms as a consequence of PD’. Several issues were mentioned: attention and concentration, planning and memory, slowness and loss of initiative, memory problems and lack of overview and (non) verbal expressions and speed. Cognitive functioning has a major impact on QoL, for example: To concentrate on two things at the same time doesn’t work for me. No, that’s impossible, watching television and reading at the same time or reading and listening to the radio at the same time. That really doesn’t work. Then I lose the thread (Man, 42, 2006). Patients define coping as: ‘(continuous) adaptation’. Focus group members formulated a central question when defining coping, namely: how do you deal with restrictions and possibilities? It is about the attitude a person with PD has and it determines the choices people make. It is an interactive process and the following issues emerge: acceptance of the diagnosis, acceptance of the disease, acceptance of losing one’s job, acceptance of new self-image and fighting and resilience. Social contacts are about the relationships patients with PD have with family, neighbours, participants in courses and members of hobby clubs. Changes in social contacts substantially influence QoL, for example, losing social

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contacts as a consequence of losing one’s job. Some patients experience support from fellow patients, whereas others do not or even resent these contacts. Care-related cluster The care-related cluster covers issues related to medication, diagnosis and good care. This care-ring is clustered around the inter- and intra-personal tracing wheels (former paragraph) and influences the functioning of the inter- and intrapersonal radar wheels (hence, the quality of daily life). Medication frequently emerged in the stories of participants. A participant (who has had PD for a long time), for example, still participates in a 4-day cycle course on a tandem with her husband. The research partner indicates he used to do this too, but when it takes too long, his wife with PD falls off her bike. He asks: ‘Doesn’t that happen to you? Can you cycle for a long time?’ (Spouse of woman, 66, 1991). The participant replies: ‘Yes, I use a nose spray which works very fast, within 3 or 4 minutes. When I become stiff and shake, I use it and that keeps me on course’ (Woman, 64, 1978). For patients, diagnosis includes: the process before the final label PD (pre-diagnostic phase) and the diagnosis itself. Within the pre-diagnostic phase patients already have symptoms, but they are not recognized as consequences of PD yet. The diagnostic phase includes the process from the first step to the physician to the final ‘diagnosis’. This influences QoL, as in the pre-diagnostic phase people have complaints and cannot do their usual activities, but do not recognize this. As such, the diagnosis itself contributes to the QoL as it gives an explanation and helps to manage expectations. A participant explains: You have many vague complaints which you do not understand, like: ‘What do I have? Why don’t I have any energy? Why is it so difficult to ride this bike?’ while everyone says: ‘You’re imagining it, this bike is fine’. They blamed me. And when the neurologist said it was Parkinson’s, on the one hand I had a bit of a fright, but on the other hand I thought: ‘You see, I do have something’. In that sense it was a release (Woman, 61, 2007). For patients, good care means: reducing the disadvantages caused by PD. From the patients’ perspective, good care requires expertise in PD (including empathy) and a multidisciplinary approach including informing and negotiating with the patient. Also competences like listening are very important for patients. A participant, for instance, experiences differences in competencies between the neurologist and Parkinson nurse: The neurologist focuses on ‘you should do the exercises like this’ and I have to walk up and down and he says: ‘oh, you are still stiff, well, than we will increase the medication a little bit’. While, with the specialized PD nurse it is possible to talk about: ‘of course it is unpleasant that I am stiff, but currently that is not my main problem. For me it is much worse that I forget things. That I am not able to hold on the connecting thread’ (Woman, 63, 2002).

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Societal cluster The societal cluster covers issues related to the position in society, societal culture and societal services. The societal ring circles around the care ring and includes the issues related to society. This cluster influences (directly or indirectly by the care ring) the functioning of the tracing wheels and the quality of daily life. Position in society means that patients want to have a meaningful societal contribution, they do not want to be approached disrespectfully and use the capabilities they still have. It is about being recognized as a human being. Patients indicate that having PD limits the possibilities to have a meaningful social contribution and participating in this research is one of their attempts to work on this: I have the feeling that I loaf around, that I am not useful anymore. I think that is a pity and I try to do things. By participating in this research as an interviewee, I have the idea that I can do something meaningful (Woman, 61, 2007). Societal culture is about (lack of) recognition on a collective level. Many participants do not feel recognized or supported by society. Factors like the lack of understanding, lack of knowledge and wrong imaging are at play. For example: At a certain moment she went to the garage or another place and then she did not know why she was there. Other people said: yes, that is age, we also have that. But I noticed it happened more often than what I thought was normal (Spouse of woman, 71, 2006). They also experience this lack of involvement and support when talking about societal services like: aids and workoriented regulations (such as WIA, IVA and WGA and the WMO in the Netherlands). Many patients are 100% disabled and finding the right help, the right institution and possibilities is difficult. Many regulations are not flexible and cannot be tailored to individual needs. There is contradictory information and patients sometimes feel: ‘You are sent from pillar to post’ (Spouse of man, 66, 2009).

Discussion This study gives insight into the factors that, according to patients with PD, influence their QoL. The findings suggest that the QoL of people with PD is influenced by a broad set of interacting factors which will differ per patient and per situation (time, location). In total, 19 factors mutually influencing the daily QoL of patients have been found. Patients in this study strongly emphasize that their QoL is not only related to their health, medical care and intra-personal factors, but also to inter-personal and broader contextual factors. Other studies have also revealed several of the factors found in the study participants, such as the severity of the disease [19], the functional status of the patient [17, 19, 20], mood or psychological functioning, cognitive problems [17, 20], sleep problems [21], social relationships [17] and

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environmental factors [17]. These existing QoL instruments are often based on problems/needs (instead of capabilities/ things people still can do) and strongly focused on health (instead of wellbeing) and on the individual (instead of on partner/family relations and the broader social network/ context/society). This study is, however, one of the first studies that reveals the complexity and inter-relatedness of the factors influencing QoL in PD patients. This inter-relatedness of factors influencing QoL is of utmost importance for a good understanding of what it means to live with PD. The findings also provide tools for other kind of QoL instruments, which are focused on capabilities, wellbeing and family relations and the broader social network. While professionals—with their specializations—are often focused on some aspects of the QoL, patients ask for an interdisciplinary approach. This study recommends needs-oriented care, as this takes into account all the factors that influence QoL. Furthermore, participants stress the personal and contextual differences to emphasize their identity and individuality and the situatedness of their disability. Living with PD is a personalized experience. Professionals are, however, according to patients, often oriented towards the collective characteristics of QoL. Although patients recognize the importance of collectivity, they also ask for more personcentred care and attention to their unique experiences. Participants in this study do not want to focus solely on the pathology of their chronic condition. Even the term ‘patients’ is problematic to them as they want to stress that they are human beings. Their identity cannot be reduced to their illness and patient role. As human beings they have their capabilities and want to realize these capabilities. They often experience the environment as discriminatory and disenabling. It is, for instance, very troublesome according to the participants that they are viewed as having no role and being useless (economically unproductive) in society. With the focus on capabilities, these findings are also in accordance with the QoL definition offered by Huber et al. [37] and Nussbaum’s [38] capabilities approach. Nussbaums’s [38] conceptualization of QoL is based on the realization of important human values and capabilities and grounded in Aristotle’s notion of human flourishing. She stresses that a person’s capabilities are significantly shaped by relationships and social circumstances. She describes 10 capabilities that influence QoL: Life; Bodily health; Bodily integrity; Senses, imagination and thought; Emotions; Practical reason; Affiliation; Other species; Play, and lastly Control over one’s environment. These capabilities are further described in Table VI. This table also shows the similarity between the 10 capabilities of Nussbaum and these findings. In line with Nussbaum’s conceptualization, person-centred care can be described as care that recognizes and cultivates the capabilities of persons. Nussbaum’s theory places these findings in a broader context, away from the responsibility of patients and healthcare professionals. Those stakeholders do, of course, have a responsibility to try to improve the QoL of themselves/their patients as much as possible. Nussbaum [38] argues, however, that government and public policy also has an important role in improving the QoL of citizens.

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Table VI. Comparing central capabilities* and radar wheel. Capability

Definition

Issue Radar wheel

Life

Being able to live to the end of a human life of normal length; not dying prematurely or before one’s life is so reduced as to be not worth living.

Bodily health

Being able to have good health, including reproductive health; to be adequately nourished, to have adequate shelter.

Bodily integrity

Being able to move freely from place to place; to be secure against violent assault, including sexual assault and domestic violence; having opportunities for sexual satisfaction and for choices in matter of reproduction. Being able to use the senses, to imagine, think and reason and to do these things in a ‘truly human’ way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. Being able to use imagination and thought in connection with experiencing and producing works and events of one’s own choice, religious, literary, musical and so forth. Being able to use one’s mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech and freedom of religious exercise. Being able to have pleasurable experiences and to avoid non-beneficial pain. Being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude and justified anger. Not having one’s emotional development blighted by fear and anxiety. (Supporting this capability means supporting forms of human association that can be shown to be crucial in their development.) Being able to form a conception of the good and to engage in critical reflections about the planning of one’s life. (This entails protection for the liberty of conscience and religious observance.) A: Being able to live with and towards others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another (protecting this capability means protecting institutions that constitute and nourish such forms of affiliation and also protecting the freedom of assembly and political speech). B: Having the social bases of self-respect and non-humiliation; being able to be treated as a dignified being whose worth is equal to that of others. This entails provisions of nondiscrimination on the basis of race, sex, sexual orientation, ethnicity, caste, religion, national origin. Being able to live with concern for and in relation to animals, plants and the world of nature. Being able to laugh, to play, to enjoy recreational activities.

Senses, imagination and thought

Emotions

Practical reason Affiliation

Other species Play Control over one’s environment

A: Political. Being able to participate effectively in political choices that govern one’s life; having the right of political participation, protection of free speech and association. B: Material. Being able to hold property (both land and movable goods) and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure. In work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers.

Quality of daily life, Time, Medication, Good care, diagnosis Body functioning, societal services, good care, diagnosis, medication Taboos, societal culture, social contacts, energy level Communication, image, cognitive functioning, coping, energy level

Family, psychological functioning, stress, coping, social contacts, image

Cognitive functioning, image, taboos, ownership Social contacts, family, cognitive functioning, taboos, image, societal culture, ownership, coping

Societal culture, cognitive functioning, ownership Coping, family, social contacts, ownership Societal position, societal culture, ownership

*Columns 1 and 2 of Table IV are from Nussbaum [38] and column 3 are findings from this research.

Improving the QoL of patients with PD should, therefore, be seen as a collective responsibility. Despite the valuable findings, this study has some limitations. This study is first of all mainly focused on patients with PD living independently at home. Two patients in a nursing home were spoken to and it was decided not to include more nursing home patient as their perceptions on QoL had already been studied [39]. However, when comparing the member check reports of the PD patients living in a nursing home with other participants in the study, it was concluded that their perceptions might not vary much. Another limitation relates to the fact that this study mainly included members of the Parkinson Association. This group might be more articulate and active than other patients. However, interviewees experienced severe

disablement as a result of PD, including concentration problems, being overactive, having a bad short-term memory, difficulties with walking and eating, communication problems, hallucinations and being very tired. As a consequence they were, for example, dependent on the help of their spouse for activities of daily living. Even participants of the voice-over group often felt disabled and experienced serious limitations due to their illness. Many of them, for example, could not participate in the focus groups since they were too ill to travel and/or participate within a group conversation. A possible exception were the participants of the focus groups, who felt relatively healthy and had mild disablement (although also within the focus groups some participants had severe difficulties with communication and could not travel alone). All together the findings cover a wide variety of experiences with QoL among patients with PD.

DOI: 10.3109/02699052.2014.916417

Although the initial selection criteria were limited to age, sex and living environment, the emergent sampling strategy allowed for the inclusion of various experiences with QoL in patients with PD, including people who experienced severe disablement. The findings are grounded in the experiences of patients with PD and their perception of QoL. The strength of this study relates to its qualitative nature, the inclusion of patients in the research team and the contribution of the voice-over group to the analyses of the findings.

Acknowledgements We want to thank all participants in the research project for their openness and effort. We thank the PV for making this research possible. Special thanks go to the research partners, the other experiential researchers, the participants in the voice-over group and on the advisory committee.

Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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