INTRODUCTION
Parkinson's disease (PD) is a progressive neurodegenerative brain condition resulting from the death of the dopamine-containing cells of the substantia nigra, estimated to affect 100–180 per 100,000 of the population (National Institute for Clinical Excellence [NICE], 2006). The causes of the disease are unknown. There is no cure, and the treatment approaches can be described as palliative.
Palliative care is the active holistic care of patients with advanced progressive illness that focuses on the person rather than the disease, and aims to ensure quality of life for those living with an advanced incurable condition (Department of Health, Social Services and Public Safety Northern Ireland, [DHSSPSNI], 2010). Palliative care originally developed within the discipline of cancer care, but there has been a strengthening opinion that people suffering with incurable neurodegenerative diseases such as PD are also candidates for palliative care since their treatment is about relieving symptoms (Clarkson, Reference Clarkson2008; NICE, 2006). NICE also proposed that the principles of palliative care be applied throughout the course of the disease, not just during the terminal end-of-life period. The World Health Organization (2010) stated that palliative care services should offer a support system to help people with life-threatening illness live as actively as possible. Rehabilitation as a component of palliative care offers the opportunity to do just this, affirming life, giving an opportunity to find purpose and autonomy, and enhancing quality of life, regardless of the timescale (National Council for Hospice and Specialist Palliative Care Services [NCHSPCS], 2000; Schleinich et al., Reference Schleinich, Warren and Nekolaichuk2008; Tookman et al., Reference Tookman, Hopkins, Scharpen-von-Heussen and Doyle2004).
Rehabilitation has also been identified as a key element to support people with long-term neurological conditions throughout their disease trajectory (Department of Health, 2005). Brown and Sutton (Reference Brown and Sutton2009) defined a concept of neuropalliative rehabilitation as “a holistic approach to the care of neurological patients with significant disability, complex needs, and a potentially shortened lifespan.”
An occupational therapist working within palliative rehabilitation has the responsibility of adding “life to days, rather than days to life,” putting an emphasis on the importance of quality of life: “In essence, we are all what we do and what we have done. The very things that we do are what identify and individualize us” (Marcil, Reference Marcil2006). In palliative rehabilitation, time is of the essence, and the person's condition is constantly changing. People have limited energy and numerous, often complex symptoms with which they are dealing and to which they have to adjust (Bray & Cooper, Reference Bray, Cooper and Doyle2004). Occupational therapy is based on the belief that there is a relationship among occupation, health, and well-being, and that what people do from day to day can impact their health, well-being, survival, and life satisfaction (Wilcock, Reference Wilcock2005; Wilding, Reference Wilding and Curtin2010). The concept of “occupation” is a key tenet within the profession (Creek, Reference Creek2010). To most people, occupation means the job they do to earn an income or living. However, within occupational therapy, occupation is considered to be comprised of all the daily tasks and purposeful activities in which we engage along with the meaning or value these tasks provide for us personally (Hinojosa et al., Reference Hinojosa, Kramer, Royeen and Kramer2003). Occupation is linked to the experience of everyday life. It involves the subjective experience of the individual participating in the occupation. Experiences emerge from engaging in occupations, and these experiences link the past with the present and the present with the future.
A literature review identified only eight studies relevant to the concept of occupation with life-limiting neurodegenerative illness, six of which explored the concept of occupation for persons with progressive neurodegenerative conditions, including PD, multiple sclerosis [MS], and motor neurone disease [MND] (Elliott & Velde, Reference Elliott and Velde2005; Wressle et al., Reference Wressle, Engstrand and Granerus2007; Pretzer-Aboff et al., Reference Pretzer-Aboff, Galik and Resnick2009; Lexell et al., Reference Lexell, Iwarsson and Lund2011; Brott et al., Reference Brott, Hocking and Paddy2007). Another study examined the daily occupations of people with the sequelae of poliomyelitis, a progressive condition (Jönsson et al., Reference Jönsson, Moller and Grimby1998), and a final study was also reviewed as it explored the concept of occupation in those with advanced cancer (Sviden et al., Reference Sviden, Tham and Borell2010).
While these studies provided information on the losses and restrictions associated with living with a life-limiting illness and particularly PD, they also provided evidence that people who are living with PD and other conditions are continuing to participate in the occupations of daily life in spite of the limitations of their disease. None of the studies exploring participation in occupation for people with PD considered palliative care as an intervention.
Hence, our study aimed to explore participation in occupation and the experiences of people with PD to gain an understanding of the potential contribution of occupational therapy as part of palliative care to enhance and maximize quality of life.
METHOD
To explore how people with PD participate in and value activities in their daily life, a qualitative approach based on phenomenological philosophy was adopted, as it provided a particularly relevant method with which to uncover the essence of what occupation means to participants (Reed et al., Reference Reed, Hocking and Smythe2011).
The specific methods were based on Heideggerian phenomenology, as it is consistent with philosophical beliefs about the importance of everyday life and doing things. This allows for exploration of such rich multifaceted, intangible, and dynamic phenomena as occupation and the everyday aspects of life (Wilding & Whiteford, Reference Wilding and Whiteford2005).
This study was regarded as “low risk” under the arrangements for research governance at the University of Ulster and approved by the research network of Parkinson's UK for recruitment purposes.
Study Participants
Purposive sampling was employed to identify participants, applying inclusion criteria for people with a diagnosis of Parkinson's disease, who were experiencing symptoms of the disease, who had the ability to communicate clearly, and who were living at home. These criteria identified the appropriate target group, along with symptoms, who could provide data from their experience of everyday living at home.
Individuals were invited to attend through their local branch of Parkinson's UK.
Data Collection
An unstructured open-ended interview was utilized with an interview protocol adapted from Creswell (Reference Creswell2007). As well as a digital recording of the interview and the interview protocol, a journal was used for reflection to record field notes and memos. Reflection is an important aspect of Heideggerian phenomenology and a tool for enhancing rigor within a study (Polit & Beck, Reference Polit and Beck2012). Seven interviews were conducted in a participant's own home and three in suitable venues at their convenience. Two interviews were conducted with a carer present at the request of participants; the others involved just the researcher and the participant. The researcher provided information on support available should any of the participants find the interview distressing. A summary of each interview was prepared and discussed with each participant over the phone to verify the data and ensure agreement to use anonymous quotes to illustrate themes.
Printed data were stored in a locked filing cabinet, and any information stored on a computer was protected by password.
Data Analysis
Inductive analysis within qualitative research employs the data itself to derive the structure for analysis, and the categories emerge from the data rather than the researcher looking for them. The pragmatic approach of thematic content analysis described by Newell and Burnard (Reference Newell and Burnard2011) was adopted.
RESULTS
Participants
Some 11 people with PD expressed interest by phoning or emailing the researcher and were sent written information and allowed time to consider whether they wanted to take part. One case, six months post-diagnosis, failed to meet all the inclusion criteria.
A total of 10 people took part in the study (6 males and 4 females), aged between 58 and 86 years (mean = 67). Participants had experienced PD for between 3 and 15 years (mean = 8.5). Participants were from both rural and urban communities. Three lived alone and seven lived with a spouse.
Themes
Four main themes and associated subthemes emerged from the data: physical, psychological, social, and spiritual experiences. The themes provide meaning for the idea of occupation for people with PD (Figure 1). While these themes and subthemes sometimes overlap, they are presented separately here for the purpose of clarity.
An illustration of the experience of occupation described by people with PD reflecting the palliative nature of this condition. The four themes map closely to the components of modern palliative care with subthemes explaining these in more detail.
THEME 1: PHYSICAL EXPERIENCE
All participants felt that PD had an influence on their physical ability to participate in occupation in their daily lives. This broad theme reflected the physical experience of participating in occupation, and four subthemes emerged from the data to capture the essence of physical participation.
Independent Living
Basically being able to look after myself. (Participant 3 [P3])
Being able to look after themselves and their home was considered important by several participants. Having to depend on others was a source of frustration, and one participant felt it was not only frustrating but also demoralizing. Use of gadgets was discussed by several participants, including specialist chairs, walking equipment, and tools to open jars and cans. Participants also talked about environmental adaptations, including moving from a house with stairs to ground-floor living. Practical advice was also discussed by many participants, including wearing satin pajamas to make it easier to turn in bed or using a mug for soup instead of a spoon and bowl. Driving was considered an important contribution to independent living. Participants who had to give up driving felt that this loss had contributed to their lack of independence and was significant:
I miss that they won't let me [drive]. It's like whenever you pass your test— You feel such elation when you pass your test. When you have to give up your license, you experience the opposite in reverse. (P1)
This subtheme of independent living represented a range of occupations and highlighted the importance of occupations to maintain independence in daily life.
Keeping Active
All but one of the participants talked about the importance and value of participation in occupations to keep active and keep moving:
I know that it [exercise] has definitely helped me a lot more than people who don't take any exercise. (P7)
Participants discussed various types of exercise, with walking being the most popular form. Swimming was considered a means of exercise by two participants, but two others described how they had been forced to give it up. One participant found that a lack of coordination meant that using their arms and legs to keep afloat was impossible, and for another the effort of having to get dried and dressed at the swimming pool was too much. Another aspect of keeping active was specific exercises to overcome stiffness. Many reported that exercises often relieved stiffness in joints and cramping, particularly in the morning when stiffness was worst:
When I get up, I would be very stiff in the morning, and sometimes I would lie in bed and do a few wee exercises. (P3)
For some participants, keeping active involved just simply keeping moving. One participant described how even if she was sitting and reading she would get up regularly to move about. Another summed up the value of remaining active in this manner:
Running water won't freeze. (P10)
Symptoms of Parkinson's Disease
This subtheme reflected the impact of the condition on occupation. Participants talked at length about their condition and the many varied symptoms they had experienced. The most frequent symptoms mentioned were tremor, stiffness, and rigidity. All participants described one or more of these symptoms. Mobility and balance affected participants in their daily life. Several reported falls and fear of falling as impacting on their activities. Participants described the difficulty with their mobility as their feet “freezing” and being unable to move:
I get a message from my brain saying “Move your feet.” My feet just will not move, and I just have to stand, and when I start to sway, I would overbalance very quickly. (P3)
One woman found that humming or singing helped her to start moving, and the rhythm helped her to walk and take bigger strides.
Eating and drinking were also affected by PD. One participant captured the essence of the disease as follows:
The simplest things are so difficult, things that, you know, you just take for granted. It just makes you feel like an old person before your time really. (P10)
The symptoms of PD varied from individual to individual but clearly impacted significantly on their participation in occupations, with the level of disability decreasing the ability to participate.
Medication
Participants reported that their medication regime was critical to their ability to carry out any activity. One described a typical morning before her medication had taken effect thus:
I'm shuffling about. I'm holding onto walls and doors, and that kind of thing, so when I come downstairs in the morning after I feed the dog, I just sit down and read until a quarter to nine or so, and then I can get up and carry on. (P3)
Some participants experienced dyskinesia as a result of their medication regime, and this presented an added burden. For another participant the on/off nature of their medication regime very much dictated what they could and could not do:
It depends whether I'm “on” or “off.” When the tablets are working, I'm on, and when the tablets aren't working, I'm “off,” so I can't really do much. I just sort of sit around waiting for them to come “on.” (P10)
Regular dosing of medication was seen as a prerequisite to any occupation, and this affected daily routine. Participants also described frequent changes in their medication regime, having to cope with side effects, and needing time to adjust to new medicines. Some participants were aware of the need for increased medications as their Parkinson's progressed:
I am on the outer limits of my Parkinson's treatment. (P1)
Another participant felt encouraged because, despite having PD for 10 years, her consultant had told her he was amazed by the effectiveness of low-dose medication.
The appropriate use of medicine played an important role in symptom management and hence occupation.
THEME 2: PSYCHOLOGICAL EXPERIENCE
Participants reported on the psychological effects of PD and how this reduced their ability to participate in occupation. This was explained using the following subthemes.
Sleep Pattern and Fatigue
Sleep and fatigue featured strongly in the interviews as a major influence on participation in the activities of daily life:
I sleep very badly, so I'm usually downstairs by half five in the morning. I maybe read the paper or watch television until it's time to go to work (P8)
Many reasons for not sleeping were suggested. One participant recounted how his tremor affected his sleep. Another participant described restlessness as the main problem, and two participants described pain as a factor in their sleep pattern. One participant recounted that getting to sleep was not a problem but that some nights were a bit “rough” because of nightmares:
I'm getting sleep, but it's sleep that doesn't seem to give me any rest. You're nearly as tired when you get up. (P2)
Strategies for dealing with lack of sleep were discussed, such as getting up and doing other things. Fatigue, tiredness, and exhaustion were all blamed on poor sleep. One participant related the exhaustion to the on/off phenomenon of her drug regime, recounting feelings of extreme exhaustion when the drugs were “off.” Lack of energy was a common theme. Fatigue contributed significantly to participation in occupation for the majority of participants.
Cognition
The data included discussions around cognition and how this impacted on participation in occupation. Several participants described a need to be organized and to plan what they needed to do:
That [organizing things] is one of the big things— I can't multitask. (P9)
She told of having to plan for things and not being able to do things at the last minute or tackle several jobs at once.
Another aspect of cognition reflected in the data was the effect on memory. One participant felt that his memory was a lot worse since he had been diagnosed with PD, and this affected his daily life. Another participant explained how often he struggled to find the words he wanted to say:
I know in my mind what I want to say, but I don't know how to get my lips to my mouth what my mind is thinking. (P1)
Impairment of cognitive skills emerged consistently from the data and was an important part of their psychological experience.
Depression
Participants described the difficulties and frustrations of PD, as illustrated by one person's description of struggling with depression:
I called it a “no” mood—neither sad nor happy. You're just totally apathetic. (P1)
His carer also explained the further complication of extreme fatigue and how the feelings of apathy and extreme tiredness were very difficult to cope with. Another effect on mood highlighted in the data was a feeling of loneliness and isolation following the diagnosis.
Stress and Anxiety
A common symptom of PD highlighted in the findings was stress, and this had a considerable impact on daily life. Participants reported a vicious cycle of stress:
Parkinson's makes you stressed, and then when you get stressed you get more stressed. (. . .) [It's an] I-work-myself-up sort of thing. (P10)
This stress can in turn make the impact of disease symptoms worse.
Coping Strategies
Participants described certain coping strategies to deal with day-to-day life along with the Parkinson's disease and allow participation in occupation. A positive attitude was an important way of coping for many participants:
My idea with Parkinson's is I'll do what I was doing beforehand and as best I can, and if it holds me up, it holds me up. (P9)
Many participants felt very thankful for what they had:
Thankfully, I'm [still] able to play it [golf] and long may that continue. (P6)
One person felt that having PD had given them the opportunity to get things prioritized and find out what was important in life, while for other participants a sense of humor was very important:
We found that by having a good hearty laugh, it's like cleaning the boiler, cleaning all the soot and dirt blocking— that's blocking up your life. It really does help. (P1)
Comparing themselves with others was also a way of coping and being thankful that they were able to cope better than others with PD and often that their symptoms were not as severe. Other more specific coping strategies were expressed. For one participant, spending time in meditation and prayer was helpful. Both specific strategies and attitudes and thinking contributed to participation in occupation.
THEME 3: SOCIAL EXPERIENCE
The data revealed a strong emphasis on the social aspect of participation in occupation and the desire and need to form connections with others. Participants described this theme in terms of the following subthemes: work, leisure, and support from others.
Work
Four participants were involved in work-related occupations. Two worked part time, one was involved in voluntary work, and the other was still employed full time. Work was described by all involved as an important occupation, and for many they valued the opportunity to get out and meet others:
I enjoy it, and I don't know what I would do if I didn't get out meeting people and work[ing] with them. (P6)
The participant who was working full time described work as an important occupation but questioned whether he would describe it as “valued.”
Leisure
There was much discussion around leisure occupations with participants valuing these activities, with certain activities still being enjoyed, even if not in the same way as before. Other activities were no longer possible.
Participants explained their enjoyment in sporting activities, notably golf or walking. These activities combined exercise with social benefits. Such creative activities as art, story writing, poetry, and photography were valued. Reading was another valued activity, with one person describing how getting a Kindle had helped him to continue to enjoy reading as he could enlarge the print.
Many participants talked about television and working on a computer as occupations they enjoyed. For some participants, computers provided entertainment and access to the outside world through the internet and email, particularly for those who were not able to go out much.
Gardening was mentioned as a valued activity along with do-it-yourself tasks, decorating, and generally being able to look after the house. Shopping was another occupation many valued, while others found it less enjoyable and reported it as something they had to do.
Several participants recounted activities they could no longer take on. One woman enjoyed dancing, especially the jive and quickstep, but found she could no longer dance due to a lack of coordination:
To me it was just lovely to jive, and I still tap my feet and wish I could get out there, but I can't. (P9)
For another participant, it was a lack of coordination and balance that made him give up cycling for fear of having an accident.
Support from Family and Friends
The data revealed many examples of support from family and friends being crucial in facilitating participation in occupation.
Many identified support from their spouse or partner as an important part of daily life. Practical help from friends and family was important as well. They highly valued practical help and support:
She encourages me. Even when she's helping me, she's still encouraging me to be independent, you know, to get up and go out, you know. She'll not sit and say, “Oh, you poor thing.” (P10)
For another person, family support was supplemented with help from daily carers who called four times a day. As well as help from family and friends, many felt that being able to be with family and having them visit was important. Looking after their grandchildren was also a valued activity:
So it's great to have them [the grandchildren] coming in and out. It gives us motivation for living. (P7)
One gentleman identified being able to visit his wife who was in a nursing home every day as the most important thing he needed to be able to do.
Socializing with family and friends was also important for many participants. For many, friendships developed through the Parkinson's UK organization were also very important and significant in their lives.
Support from Professionals
Support from healthcare professionals emerged as an important factor in continuing to participate in an occupation. Participants highlighted the importance of seeing the consultant regularly and ensuring they were on the right medications. While many outlined the benefits, some also identified not being able to access specialist consultant support as contributing to their worsening symptoms and subsequent difficulty in engaging in any form of occupation.
The Parkinson's nurse specialist was identified as an important source of support for many. Participants also discussed support from allied health professionals. One described difficulty accessing services for pain management and felt that he and his wife had often been left to cope alone. Another participant attended a day center, which he found very beneficial and an important part of his routine.
THEME 4: SPIRITUAL EXPERIENCE
Throughout the data, spiritual elements emerged to explain how people coped with Parkinson's. These are presented in the following subthemes.
Living with Daily Uncertainty
All participants spoke about the unpredictability of the disease and the fluctuation in their symptoms and subsequent variability in ability to participate in an occupation. They talked about good days and bad days. For others, the fluctuation could be from hour to hour or even minute to minute:
I'm not free to plan my day really— I have to take it as it comes, you know. I can't say to you, “Now I'll go out with you this afternoon,” because until this afternoon I don't know how I'm going to be. (P3)
Some found this uncertainty very stressful and embarrassing. One described how his tremor would start with no warning, particularly on occasions when he sat down to eat:
I have to tell the people sitting around me what it was and say to them, “It's Parkinson's,” and I say to them [that] it's a terrible thing, and you have to confess to people you're not well, and to such an extent. (P4)
The “on/off” syndrome described when discussing medication also contributed to this uncertainty, and for many the “off” phase they experienced severely influenced their participation in the activities of daily life:
It's almost as if we've been chipped into gradually until we've been reduced to really very little. (P1)
Participants who described this syndrome talked of the frustration and distress brought about by the uncertainty and inability to participate in occupations.
Planning for the Future
Some participants expressed a positive outlook, while others made reference to uncertainty about their future. They expressed gratitude that they could cope with their symptoms and that the medication kept things under control. One participant discussed the medication as follows:
It's working, and long may it last. I just thank God that's all I have, and long may it last. (P8)
Some described a need to be as proactive as possible to influence their future:
How might I be next year? How will I be affected? Will I be worse? What do I have to do to get myself organized and ensure that I'm not going to be as bad as I possibly could be. (P6)
Many discussed the progressive nature of PD and reflected on the progression of their disease and their worries about the future:
This is my goal: to get everything that I want to do started, before Parkinson's gets too bad. (P9)
It's better controlled, but slowly but surely Parkinson's gains a wee bit over the year, over the months. (P7)
The variable of the deteriorating PD process can make the future look quite unpredictable.
Creating Meaning in Life
Participants talked about activities they were involved in that reflected their personal lives. One was restoring a patchwork quilt for her family, and she had also started to write poetry. She had written poems for close family members, and was writing a poem to go along with the quilt. Another was typing a history of his life, while another enjoyed story writing and had written about events in his life:
I write about my experiences, coming up to all the years I was working— I've got that down on paper. (P2)
Another described taking part in reminiscence sessions within the day center he attended. This was an activity he enjoyed and looked forward to. Reminiscence can be regarded as a means of reflecting on life and contributing to meaning.
Other participants referred to their religious beliefs and their relationship with God as adding meaning to their lives. Some talked of going to church as an important occupation, and another recounted how prayer was an important occupation in his daily life. Others made reference to God and how they were thankful they were able to cope. One participant said that God had given him good health when he was younger and had needed to work.
The findings highlighted a wide variety of important and valued occupations within the lives of participants. The data provided insight into how people with Parkinson's participate in these various occupations and some of the strategies they utilize to enhance that participation.
DISCUSSION
Our study examined the experience of occupation for people living with Parkinson's and the potential relevance of palliative care for these individuals. A palliative care approach could enhance this experience of occupation for people with PD and thereby enhance quality of life with meaningful and valued activities. From the emergent themes, it is clear that occupational therapy and palliative care have a strong connection and shared ethos. The four main themes that emerged to represent the experience of occupation also reflect the four domains recognized as requiring assessment and intervention within palliative care.
It is the experience of occupation that is important, not the occupation itself or the outcome (Hasselkus, Reference Hasselkus2011). Hence, a palliative approach may be applicable throughout the entirety of the disease (from diagnosis onward) and not merely limited to the terminal end-of-life period (NICE, 2006; National Council of Palliative Care [NCPC], 2010). During their discussions about occupation, participants identified experiences within all four domains regardless of the stage of their disease. The data supported the suggestion that people with a progressive illness have needs across the physical, psychological, social and spiritual domains from the point of diagnosis to the final weeks and months of life (Department of Health, 2005), which would benefit from palliative interventions. People suffering with incurable neurodegenerative diseases such as PD are ideal candidates for palliative care since the treatment from diagnosis onward is all about relieving symptoms (Clarkson, Reference Clarkson2008; Waldron et al., Reference Waldron, Kernohan and Foster2011).
The PD trajectory is complex. Time is of the essence, and the condition is constantly changing. People have limited energy and numerous complex variable symptoms that they are dealing with and to which they have to adjust (Bray & Cooper, Reference Bray, Cooper and Doyle2004). Our findings highlighted this observation as individuals had different priorities for occupations they valued, and they were aware of the deteriorating nature of their illness. Many reported complex symptoms, and many experienced fatigue and exhaustion. This need for individualized intervention and management of complex symptoms would further support the link between palliative care and occupational therapy for this group of patients. Our results suggest that a person-centered approach and the management of symptoms are central components of both palliative care and occupational therapy.
The themes that emerged from the data also reflect the necessity for occupational therapy practice to focus on the wider social and psychosocial aspects of occupation and not just self-care activities.
The experience of occupation is subjective and often linked to the value and meaning accorded to the occupation within each individual's everyday life. The experiences of occupations described by our participants influenced all domains of their life and their experience of life itself.
The rich data generated in our study illustrates the complexity and diverse nature of the concept of occupation and the impact on participation in occupations when faced with a deteriorating condition. It also provides an opportunity to provide deeper insights into mundane and everyday experiences (Lala & Kinsella, Reference Lala and Kinsella2011).
STRENGTHS AND LIMITATIONS OF THE STUDY
Participants were willing to share rich descriptions of their experience of Parkinson's disease and participation in an occupation. Their experiences gave valuable insight into their participation in an occupation, which is of benefit to all healthcare professionals and particularly occupational therapists.
However, as with all qualitative studies, generalization of findings is not possible. Findings were based on a convenience sample of people with PD. They all belonged to the organization Parkinson's UK, and many participated in local support groups, which may have exerted an influence on the type of person who volunteered.
CONCLUSION
This study adds to the limited literature on the concept of occupation within the context of a life-limiting neurodegenerative illness. Our findings suggest that a palliative care approach has the potential to enhance this experience of occupation for people with Parkinson's disease and as a result offer improved quality of life for this population. People with PD may not be considered a “traditional” palliative or end-of-life population, but they are nevertheless living with a deteriorating condition and a continuum of loss, with the resulting impact on quality of life. This being the case, the palliative approach has something to offer this population. People living with PD would benefit from multiprofessional, generalist palliative care supported where necessary by specialist services (Hudson et al., Reference Hudson, Toye and Kristijanson2006; NCPC, 2006; Kernohan et al., Reference Kernohan, Waldron and Hardyway2011; Waldron et al., Reference Waldron, Kernohan and Foster2011).
The findings also suggest that there is a valuable role for occupational therapy within palliative care. As medical management of illness extends life expectancy, many more people are living with life-limiting illness. This provides an ideal opportunity for occupational therapists to support people to fulfill their priorities for living, while dying, and to enable participation in valued occupations (Pearson, Reference Pearson2010).
The experience of occupation in daily life emerged as reflecting all domains of life, so that occupational therapy that adopts a palliative approach and occupation-focused interventions would greatly enhance quality of life for people with Parkinson's disease. Occupational therapy is underutilized in palliative care, and there is a need for more research to strengthen the evidence for its value within palliative care (Halkett et al., Reference Halkett, Ciccarelli and Keesing2010; Keesing & Rosenwax, Reference Keesing and Rosenwax2011).
The importance of occupation for those living with advanced PD was pithily vocalized by one participant in a succinct metaphor encapsulating both the essence of occupation and the restrictions of the disease itself:
As I always say, “running water won't freeze.”
