Challenges and strategies among women and men with Parkinson’s disease: Striving toward joie de vivre in daily life

Abstract

Introduction

To offer people with Parkinson’s disease optimal occupational therapy, it is important to have a detailed understanding of how they manage everyday life. The aims of this study were to explore how people with Parkinson’s disease manage the effect of the disease on everyday life and to investigate gender similarities and differences concerning this issue.

Method

We interviewed 24 people with Parkinson’s disease (14 men), at a mean of 8 years after diagnosis. The interviews were analysed according to Grounded Theory.

Findings

‘Striving to maintain a good everyday life’ was established as a core category. To overcome obstacles caused by the disease, the interviewees struggled with perpetual adaptation to the medication regime and ongoing changes in their abilities. To achieve best possible everyday life, it was essential to keep their own spirit up; for example, by prioritising valued occupations. Women and men contributed to all categories and used the same strategies.

Conclusion

Men and women with Parkinson’s disease used the same strategies to manage daily life challenges. Our findings support the relevance of disease-specific occupational therapy interventions focusing on the individual fit between person, environment and occupation, and highlight the need for joyful occupations to attain a satisfactory daily life.

Keywords

Parkinson’s disease occupational therapy activity of daily living coping strategies quality of life gender

Introduction

Parkinson’s disease is a common and disabling neurodegenerative disorder (Poewe et al., 2017). It is caused by loss of dopamine-producing cells in the brain, and the reason for this is not yet understood. It is characterised by motor symptoms such as tremor, stiffness, slowness of movements, gait and balance difficulties, and also by non-motor symptoms such as depression, sleeping disorders, fatigue, sexual dysfunction, pain and cognitive decline.

According to recent estimations, more than 10 million people worldwide are living with Parkinson’s disease (Parkinson's Foundation, 2018), and due to an ageing population, this number is expected to increase (Poewe et al., 2017). In the UK, about 127,000 people are living with Parkinson’s disease (National Health Service, 2018), and for Sweden the estimated number is about 22,000 (Lökk et al., 2012). Parkinson’s disease may affect people before 40 years of age but the onset of disease is most common between 60 and 75 years. The disease occurs in all ethnic groups and affects both women and men (Poewe et al., 2017).

Currently, there is no cure for Parkinson’s disease and the primary goal of treatment is to enable persons living with Parkinson’s disease (PwPD) to achieve the best possible quality of life (QoL) (van Uem et al., 2016). Oral medications with levodopa and dopamine agonists are the main treatments. A persons’ daily intake of various antiparkinsonian medications is described by the levodopa equivalent dose per day (LEDD) (Tomlinson et al., 2010). For those with a more advanced disease, treatment with pumps delivering medication continuously and/or neurosurgery with implantation of electrodes into the basal ganglia area (deep brain stimulation; DBS) may be an alternative (Poewe et al., 2017). There is also increasing evidence about the importance of gaining access to multi-disciplinary teams for PwPD (Monticone et al., 2015; The National Board of Health and Welfare, 2016). The National Institute for Health and Care Excellence (NICE) guidelines (NICE, 2017) recommend that occupational therapy should be available for PwPD both early in the course of illness and also with a disease-specific competence, when PwPD experience difficulties in daily living.

Since the late 1990s our team at the University Hospital of Northern Sweden in Umeå has conducted research covering broad perspectives of Parkinson’s disease and its treatments. Restrictions in activities of daily living (ADL) and QoL have been found to be present already in the first year after diagnosis (Hariz and Forsgren, 2011). In both literature reviews and quantitative studies we have shown gender differences in access to advanced neurosurgical treatment (DBS) (Hariz et al., 2003, 2011), as well as in the outcome of DBS, in terms of disability and health-related quality of life (HRQoL) (Hariz et al., 2013). The present study is part two of a two-piece qualitative interview study including 24 persons living with idiopathic Parkinson’s disease (Sperens et al., 2017). The first study explored the participants’ attitudes toward neurosurgical treatment (DBS), and showed their process of balancing fears and hopes in relation to an advanced treatment they considered to be the last alternative. It also showed that men and women reasoned in a similar way about DBS (Sperens et al., 2017).

Literature review

In Parkinson’s disease, the rate of disease progression is individual but eventually will affect the persons’ ability to maintain ADL and independence, with significant impact on work, leisure and family life (Foster, 2014; Herlofson and Kluger, 2017). Both visible (tremor, dyskinesias and freezing of gait) and invisible features of the disease (pain, fatigue and stress sensitivity) negatively affect performance and participation (Herlofson and Kluger, 2017; Thordardottir et al., 2014). Feeling disabled and socially stigmatised have a negative effect on HRQoL, (Rosqvist et al., 2017).

Occupational therapy for PwPD has been described in guidelines from the UK and The Netherlands (Aragon and Kings, 2015; Sturkenboom et al., 2011). A randomised controlled trial by Sturkenboom et al. (2014) indicated that home-based occupational therapy intervention led to improvement in self-perceived ADL, but also emphasised the need for further research to identify important factors to make occupational therapy interventions more suitable for PwPD.

The importance of including gender analysis in rehabilitation and healthcare has been highlighted by Ahlgren et al. (2016) and Risberg et al. (2009). In gender research the term sex usually refers to biology (for example, genetics, hormones and biological processes) and the term gender refers to the socially constructed aspects of being men and women, related to upbringing conditions, daily life, norms and culture (Connell and Pearse, 2014). In health research, a dichotomy between sex and gender is difficult to handle, and it is often practical to see biology as part of the concept of gender. Therefore, in this study we use the word gender with the meaning of both the socially constructed and biological aspects of being a woman or a man (Connell and Pearce, 2014).

A recent review of the literature concerning gender differences in Parkinson’s disease (Georgiev et al., 2017) points out that such studies are scarce. This review showed that existing research about gender differences in Parkinson’s disease suggests that men are at higher risk to develop the disease and have worse motor symptoms. Women, on the other hand, have more motor complications related to medical treatment. Furthermore, this literature review revealed gender differences for some non-motor symptoms; for example, in cognition, where women show better results on measures of verbal memory and executive tasks whereas men show better visuospatial abilities, and in measures of depression and pain, where women show higher levels than men. These differences, however, are not unique to Parkinson’s disease but mirror what is also seen when comparing men and women in the general population. For QoL and ADL the evidence is unclear: some studies show that the effect the disease has on these areas is worse for men, whereas others show the opposite (Georgiev et al., 2017).

To offer PwPD the best possible interventions with the goal to maintain skills and improve activity and participation, and ultimately maintain a good HRQoL, it is important for occupational therapists to expand their knowledge of how women and men with Parkinson's disease experience and manage obstacles caused by the disease.

Therefore, the aims of this study were to explore how PwPD experience and manage the effect of the disease on their everyday lives, and to investigate similarities and differences between men and women with respect to this issue.

Method

In this interview-based study, we aimed to understand participants’ experiences and how they handled their life in relation to Parkinson’s disease. For this purpose, the methodology of Grounded Theory was found to be suitable (Charmaz, 2014). Although aspects of the method (such as recruitment and overall conduct of the interviews) were the same as those reported in Sperens et al. (2017), the analysis in the current study focused on other issues.

Data collection and participants

Together with a Parkinson’s disease specialist nurse at the University Hospital of Northern Sweden, we searched the records of all patients diagnosed with idiopathic Parkinson’s disease without dementia, who were known to have expressed difficulties in daily life due to the disease. Thirty-six people (23 men, 13 women) were identified and sent an information letter, asking if they agreed to participate in this study. One reminder was sent to those who did not answer. Twenty-one people (14 men, 7 women) accepted the invitation. Later, three more women fulfilling the same inclusion criteria were recruited through contact with the chair of the Swedish Parkinson Trust (The Swedish Parkinson Trust, 2018). Hence, a total of 24 people were included (14 men, 10 women).

Data were collected through qualitative interviews (Charmaz, 2014). The majority of the interviews were conducted face to face, by one interviewer (MS, GMH or KH), usually in the person’s home. Four participants, living far away, were interviewed by telephone. The interviews were semi-structured, with open-ended questions concerning broad areas, such as the participants’ feelings and reactions when receiving the diagnosis, their experiences of the disease and its treatments over time, and their everyday life (Sperens et al., 2017). Sample questions focused on in this study included the following: ‘Can you please describe how an ordinary day looks like for you?’, ‘What would you like most to do on an ordinary day?’, ‘What causes you most trouble/is most difficult in an ordinary day?’, ‘How do you deal with this?’ The interviewer tried to facilitate the narrative with follow-up questions such as ’Please can you explain further’, ‘Please could you give me an example?’

To secure sociodemographic data, participants were asked to answer structured questions about civil status, education level, employment status, membership of the Parkinson Society and whether they received help at home. The interviews lasted 60–140 minutes, and were digitally recorded and transcribed verbatim (Sperens et al., 2017).

The patients’ LEDD (Tomlinson et al., 2010) at time of the interview were obtained from the patients’ medical records.

Analysis

The analysis was performed according to the constant comparison technique in Grounded Theory (Charmaz, 2014). When the first three interviews were conducted and transcribed, all researchers separately read and coded them line by line (initial coding). The research group then met to compare initial codes and discuss content and meaning of the participants’ experiences. Thereby, the authors could learn and reflect during the interview process, refine interview questions and be alert when new aspects were described (Sperens et al., 2017). Another three interviews were then conducted, coded and compared. In this process, with interviewing, coding and sessions for joint analysis, preliminary categories were identified, written down in memos and mind-maps and successively developed and modified. After analysing the first 21 interviews, a core category grounded in the meaning and content in the participants’ narratives was elaborated, and categories and subcategories were established. To make sure that the comparisons regarding gender patterns would be well grounded in the data, we decided to interview more women. We considered the data to be saturated and stopped recruiting when we found that the analyses of the interviews with the three additional women fitted well into the already developed findings.

At a last step, we analysed the data for similarities and differences between women and men. To include this as the last step of the analysis was a conscious decision to avoid the risk of reconstructing preconceived gender differences when outlining the categories and subcategories (Risberg et al., 2009).

Finally, all interviews were re-read to ensure that the results were grounded in the data and that categories and interpretations could be re-contextualised into the interviews.

The local ethical board at Umeå University approved the project (D. No: 2012-36-32 M), and all participants gave written informed consent before the interviews.

Results

Characteristics of the participants

Table 1 shows the sociodemographic and clinical characteristics of the interviewees and their LEDD (Tomlinson et al., 2010). The mean duration of Parkinson’s disease since diagnosis was 8 years and the mean LEDD was 1191 mg. The number of daily medication doses varied between three and nine. Men had higher and more frequent daily medication doses than women. One man was treated with levodopa gel (Duodopa) through a duodenal pump. Thirteen patients (six women) reported need for help in some of the daily activities. Eight patients (five women) were still working part or full time.

Table 1.

Sociodemographic and clinical characteristics of 14 men and 10 women with Parkinson’s disease.

	Whole group, n = 24	Men, n = 14	Women, n = 10
Age at diagnosis, years	53 (40–63)	54 (41–63)	51 (40–61)
Duration of disease, years	8 (1–19)	9 (3–19)	8 (1–19)
Age at interview, years	61 (46–80)	63 (46–80)	58 (47–67)
Daily medication doses^a	5 (3–9)^a	6 (3–9)	4 (3–6)^a
LEDD, mg^b	1191 (525–2322)^b	1353 (525–2322)^b	890 (600–1310)^b
Civil status
Cohabitant	19 (79)	11 (79)	8 (80)
Single	5 (21)	3 (21)	2 (20)
Level of education^c
Primary school	5 (22)	3 (23)	2 (20)
High school	7 (30)	4 (31)	3 (30)
University	11 (48)	6 (46)	5 (50)
Self-reported need for help in daily life
Need help	13 (54)	7 (50)	6 (60)
Do not need help	11 (46)	7 (50)	4 (40)
Employment status at time of interview
Working full time	1 (5)	1 (7)	0
Working part time	7 (29)	2 (14)	5 (50)
Sick-listed	8 (33)	4 (29)	4 (40)
Retired	8 (33)	7 (50)	1 (10)
Member of Parkinson Society	20 (83)	12 (85)	8 (80)

LEDD: levodopa equivalent daily dose.

Note: Data are shown as n (%) or mean (range).

Missing data in two female patients.

Missing data in four (one male) patients.

Missing data in one male patient.

The participants described a great variance of experienced symptoms of the disease, including motor symptoms (rigidity, shaking, cramps, wearing off, speech problems and involuntary movements) and non-motor symptoms (fatigue, sensitivity to stress, sleeping problems, memory complaints and mental slowness). Also, they gave personal and detailed descriptions of the effect of the disease on their everyday lives. ‘Striving to maintain a good everyday life’ was established as the core category, grounded in the following three categories: ‘Adapting to medication regime’, ‘Doing in a different way’ and ‘Pepping the gusto and keeping up the body’. The three categories were underpinned by subcategories (see Table 2), each of them are illustrated with quotations from the participants. The participants are identified from Mr 1 to Ms 24, in the order they were interviewed. The aim when choosing quotes was to use the most illustrative as well as to have both men and women represented.

Table 2.

Core category, categories and subcategories following in-depth interviews with 24 people (10 women) with Parkinson’s disease.

Core category	Striving to maintain a good everyday life
Categories	Adapting to medication regime	Doing in a different way	Pepping the gusto and keeping up the body
Subcategories	Struggling to live by a schedule	Managing time and energy	Keeping a positive mind
	Dealing with unpredictable effects of medication	Using aids and new techniques	Striving for worthwhile occupations
		Sharing practical tasks	Aspiring to have rewarding social relations
			Replenishing energy in areas of comfort
			Putting physical exercise into practise

Striving to maintain a good everyday life

Living with Parkinson’s disease was described by both women and men as a conscious and rather demanding strive toward the goal of establishing and keeping up a satisfying everyday life. Not knowing the real effect of the disease in the future, from a lifetime perspective to the next several hours, implied an unpredictability in ordinary life. To achieve a satisfactory and enjoyable everyday life despite this uncertainty, the participants described it as essential to keep up a good mood. They expressed the importance of having a good social life, enjoyable occupations and places of comfort for recovery. To make everyday life easier and to handle obstacles caused by the disease, the participants outlined the need to adapt their occupational performance and also stated the crucial role of having an efficacious medical treatment. Both women and men contributed to all categories and subcategories, and the strive to maintain a good everyday life was narrated in similar ways.

Adapting to medication regime

Struggling to live by a schedule

Most important for the interviewees to have a manageable everyday life was to remember to take the medication at the given time, no matter where they were or what they were busy with, as explained by Mr 13: ‘When the timer rings, I might be busy with something and think “oh not now”, then, after a while, I feel how my body gets stiff and creeping and I realise; Oh! I am one hour late’.

To optimise the effect of medication and reduce symptoms, it was essential to coordinate both timing and content of meals with the intake of medications. Everyday life became scheduled by this need of interplay between medications and food. However, managing this interplay was no guarantee for participants’ ability to fulfil their plans for the day because their medication need also varied according to their daily activities:

I have tried to live according to a schedule but my body does not use the medication according to a schedule; it depends on how I feel, how and when I eat, when I sleep, how much I do, how stressed I am … (Ms 9).

Dealing with unpredictable effects of medication

Sometimes the effect of medication could fail, even when following the schedule and eating properly. Then, a persisting slowness of movement (bradykinesia) and increasing stiffness and shakiness could easily put an end to planned activities. One solution then was to take it easy and wait until the next scheduled medication intake, hoping the symptoms then would respond to the medication: ‘If I take my pills and the expected effect doesn’t come as it should do, then I have to wait for the next round, and maybe not get any effect then either’ (Mr 20).

Another unpredictable issue was the side-effects of medications, such as erratic involuntary movements in arms and legs and cramps, challenging daily activities, as expressed by Ms 19: ‘Now I have learned to put my hand in my pocket when I go shopping, in order to avoid to tear down items from the shelves, if my hand would start to move without control’.

Doing in a different way

Managing time and energy

The participants adapted the time and energy spent on different activities according to daily functioning and ability. To be in charge of what to do, when and how, was generally important for wellbeing. One strategy to counteract the consequences of ‘being slow’ was to have foresight and always plan ahead to ensure sufficient time, as described by Mr 18: ‘Today, I had to travel to the hospital by bus, and had to wake up at 3 am. I have to get up very early since I am not able to rush …’

Reducing one’s expectations about what to achieve in performance was another way to deal with being slower physically and mentally. Some described this adaptation just as an unproblematic matter of fact, as expressed by Mr 15: ‘it is not crucial to keep up with everything, a little dust in the corners, who cares? I don’t’.

For others, this was a more troublesome process, even threatening their personal identity, as put by Ms 11: ‘It has been a conversion of my personality from being such a quick and swift person before, but not anymore; I am still working on that change’.

Using aids and new techniques

The use of aids and techniques to facilitate ADL varied considerably among the interviewees. Some told about techniques that helped them on a day-to-day basis, such as giving oneself verbal commands to walk with less effort and to get going when stuck (freezing). Some participants used technical aids, such as a walking stick, door opener and bathing aids. Those aids made some daily tasks much easier, exemplified by Mr 2: ‘The occupational therapist helped me with new useful tools, some of them trivial; she showed me a simple adapted scissor for cutting nails, and it worked perfectly’.

The participants described techniques for structuring the day and for remembering, such as using digital or paper diaries, writing memos on paper and using functions as memos and alarms on their cell phone. In a complex situation, the need of a compensating technique could be very obvious, as described by Ms 11, who works in childcare: ‘I have been asked to send one child home at 2 pm, then I immediately have to write it down, I can’t help another child with the clothes first. I have to do one thing at a time’.

Sharing practical tasks

To receive practical support from family and friends was seen as a natural arrangement by the participants and was often described as a kind of collaboration. This was particularly applied at home, but also at work, as narrated by Ms 19, who works as a nurse-aid: ‘We swap duties … my colleague helps the patients putting on their pants, while I make that phone call to the nurse for bringing the medication. In that way we help each other …’

Both women and men told of doing a wide range of household tasks, like cooking, cleaning, washing up, baking and shopping. Some of the interviewed women told about changes in the division of household tasks, their husbands now doing more and taking more responsibility. Mr 13, on the other hand, spoke about having difficulties meeting expectations from his wife, such as going shopping and doing cleaning while she was at work. Concerning home repairs and outdoor projects, women described that they no longer could assist in this type of task. The men were performing these tasks, both by themselves and with help of other men, but they also expressed worries (now or in the future) about requesting outside help or assistance to manage the chores around the house, the summer cottage or the boat:

I do as I am used to, but it becomes more and more difficult. It feels awkward for me to hire people for help with our summer house and our boat (Mr 4).

Pepping the gusto and keeping up the body

Keeping a positive mind

To keep a positive attitude and maintain good mood was expressed as being of vital importance to preserve a good everyday life. For some of the participants, positive thinking was described as part of their personality and the way they always had tackled obstacles. For others, thinking positive was more of a striving, a conscious strategy or an attitude they felt obliged to keep in mind, as stated by Mr 1: ‘I have tried to act a little, or not act, but one has to try to be positive with one self and jump out of bed in the morning and say “Good morning Mr.1! A new day with new opportunities!”’

The participants described the increased risk of being afflicted by depression when having Parkinson’s disease, and that this was something they had to live and deal with. To take each day at a time, to try to make every day worthwhile and not to worry about future troubles was a common approach to deal with the uncertainty of the future:

I do not want to feel that I am going to get depressed. One should not anticipate the sorrow. I want to anticipate happiness instead (Ms 17).

Striving for worthwhile occupations

The participants emphasised the need to be occupied with stimulating and engaging activities: ‘To do things, to feel stimulated, is as important as medication’ (Mr 12). To be creative, to experience a sense of being absorbed, forgetting time and space, was crucial for wellbeing, as described by Ms 23: ‘You feel so engaged in what you are doing, you feel so very good when you are sitting there, painting’. Among the activities described by women, sewing, needle-craft and shopping were quite common, but additionally activities such as genealogical research, downhill skiing, fishing and pole walking were mentioned. Men described repairing and constructing, hunting and fishing, but also dealing with antiques, being a radio amateur and photography as valuable occupations.

It was also acknowledged that ‘having flow’ could mean forgetting time and therefore risking becoming rigid and feeling pain, as expressed by Mr 12: ‘Now I’ll keep on with my own photos, in black and white. I think that’s fun. The problem is, when I’ve been sitting with the photos for a while, I get stuck’.

Aspiring for rewarding social relations

Being together with family and friends was described as essential, as exemplified by Ms 24: ‘And then we have grandchildren! I must say, they are pearls in my life’. The participants were very aware that their illness had a huge effect on their families’ situation, and sometimes tried to keep their own spirits up for the sake of them, for example by taking antidepressant medication.

To choose among social activities and get most out of these events was expressed in terms of actively keeping up with people and events that were enriching, as described by Ms 19: ‘I’ve got to choose relations myself that I can handle and I have made contact with people that I really enjoy’. Joining the Parkinson Society had, for several of the participants (both men and women) been important socially, making friends with people they did not have to explain their health issues to. However, even withdrawing socially was a strategy to avoid feeling uncomfortable, when one’s own mind and speech were experienced as too slow to participate in a conversation, as expressed by Mr 18: ‘When together in a company of people who are talking, I avoid saying something because it will sound so weird, and that will stress me out so much and it will be noticed’.

Replenishing energy in areas of comfort

The value of certain places and environments such as outdoors, the summer house and the home, was spontaneously expressed by the participants when asked about what made them feel good in everyday life. The importance of ‘the home’ was described in various ways, such as a place for peace, tranquillity and comfort. Living in beautiful surroundings and close to relatives was also important qualities related to the home. Also, the summer house and the boat were environments where participants could relax and ‘just be’: ‘It is a relief to get to the summer house. It is a change of environment. You can breathe, relax, and just sit and enjoy’ (Ms 7). Mr 20 described his feeling when being on the boat: ‘I feel really good when I cuddle up in the boat, it is entirely my own desire’. The tasks required of the physical environment in, for example, the home were seen as valuable to keep busy and occupied in a self-managed way: ‘Taking care of the house keeps me busy, I enjoy doing woodwork and there is always something to attend to’ (Mr 16).

Putting physical exercise into practise

Physical exercise to keep up both mobility and wellbeing was emphasised as important by the participants. Meetings with physiotherapists, exercising at the local rehabilitation unit and being coached and encouraged by someone with knowledge and experience with Parkinson’s disease were appreciated. It was a challenge to practise on one’s own, at home. The need of a group to join, to have a partner/friend while exercising or someone coaching was obvious, as expressed by Mr 12: ‘as soon as I leave the Rehab Centre, I stop exercising: I need company, and a group to motivate me’.

Some, who lived in a town, joined weekly exercises during daytime arranged by the local Parkinson’s association; this was also described as a valuable social gathering. Those who were still working or living in the countryside made arrangements with friends or family to exercise regularly together, as described by Ms 11: ‘Every day at six o’clock regardless of weather, my friend passes by, and we go for a walk’.

Discussion

The aim of this study was to explore how women and men living with Parkinson's disease experienced and managed the effect of the disease on their everyday lives, and to investigate eventual differences due to gender. Despite challenges, the participants strived to maintain a daily life as worthy and meaningful as possible. The unpredictable manifestations of Parkinson’s disease, as well as the mandatory and timely need for medication, had to be planned and taken into consideration in relation to the need to pursue daily chores and other desired activities. This constant endeavour for PwPD, to plan ordinary daily life to coordinate medication, food intake and activities, is described by Shin et al. (2015) as a struggle. Aragon and Kings (2015) outlined the need for occupational therapists to promote self-care routines for PwPD, including planning and prioritising activities and the implication of Parkinson’s disease medication. This support could be given by occupational therapists, provided they have specific knowledge about the effects of the disease itself, as recommended in the NICE guidelines (NICE, 2017), and not only knowledge about activities, their meaning and organisation.

To remain positive and to keep up one’s own spirit to counteract the consequences of the disease was considered as important, but not always an easy task. Hurt et al. (2014) advocated that therapeutic interventions should facilitate an optimistic attitude among persons living with a chronic disease, to contribute to a higher level of wellbeing. In contrast, Ruthig et al. (2012) argue that there is an obvious risk that those living with a lifelong illness feel forced to be positive and also obliged to keep their spirits up. Also, this way of thinking could enhance feelings of a person’s own responsibility for the outcome of treatment. Occupational therapists and other healthcare professionals have to make judgements for each individual’s need of support, whether and when it is proper to encourage a client to be more optimistic, discuss measures to facilitate improved wellbeing or justify the right to feel sorrow and anger (McCreaddie et al., 2010).

Given the participants’ descriptions of the importance of being occupied, and the crucial role of a supportive physical and social environment for wellbeing, our study supports the relevance of occupational therapy focusing on the individual fit between person, environment and occupation for PwPD (Aragon and Kings, 2015; Law et al., 1996; Sturkenboom et al., 2011; Townsend and Polatajko, 2007). Vann-Ward et al. (2017) recommend support for PwPD to develop relationships and be involved with sensory integrating activities, which is highly concordant with the findings in our study. Our results support the importance of PwPD being engaged in meaningful activities as a means of optimising HRQoL (van Uem et al., 2016). Both the NICE recommendations (NICE, 2017) and national guidelines (Aragon and Kings, 2015; Sturkenboom et al., 2011) for occupational therapy for PwPD are broad in targeting activities, family roles and environmental adaption. Our results suggest that engagement in meaningful occupation as a contributor to good HRQoL and joie de vivre should be emphasised more.

Gender patterns

It is well known that men with Parkinson’s disease have higher doses of dopaminergic medication than women (Nyholm et al., 2010). This gender difference can be explained by bigger body mass index in men and by higher bioavailability of levodopa in women (Kumagai et al., 2014). However, the relatively high LEDD for both men and women in our study indicate that the participants are in a more advanced stage of the disease.

A strong and major finding in the gender analysis was that men’s and women’s ways of managing their difficulties related to Parkinson’s disease were the same. All strategies used by the participants to maintain a good everyday life were well grounded in the accounts from both men and women, which is also illustrated in the quotations throughout the results. This is an important finding and challenges common preconceptions about women and men acting and reacting differently in situations of stress and disease; for example, that women are more fearful, or more patient and able to adapt to new circumstances (Ridgeway and Correll, 2004). The gender differences found were foremost related to a gender segregated distribution of the duties and activities that the participants tried to manage, for example, regarding household tasks and leisure activities. More than being a Parkinson’s disease-specific pattern, these differences mirror the gender order in society and the fact that men and women are occupied with different tasks (Statistics Sweden, 2016).

Implications for occupational therapy

Occupational therapists who have knowledge about the interaction between ‘the person, the environment and occupations’ (Law et al., 1996) are important to support PwPD in a challenging daily life. Knowledge about Parkinson’s disease as such is pertinent to understand the dynamic relationship between PwPD, their occupations and their environment. PwPD need information on how occupational therapy interventions can facilitate their daily life to achieve a more joyful life, with less struggle.

Limitations of this study

Because some people did not reply or declined to participate in this study, there could be a selection bias favouring more outgoing PwPD, who are more willing to discuss their experiences. Also, many of our participants were members of the Parkinson Society, implying that they had a good knowledge about the disease and its consequences. Furthermore, all participants were living in Sweden, a country with a high degree of social welfare and with free healthcare, which would imply less economic worries. Additionally, the context of a nationally high level of gender equality must be considered when evaluating our findings (United Nations Development Programme, 2016). Feedback from the participants on the results could have improved the reliability of this study.

Conclusion

Our findings support the importance for occupational therapists to be well knowledgeable about Parkinson’s disease, its various expressions and their effect on PwPD. This will enable the development of disease-specific occupational therapy interventions, focusing on the individual fit between person, environment and occupation, with special emphasis on promoting joyful occupations to enable a regular and satisfying daily life. Although women and men displayed a gendered-pattern in distribution of daily activities, they used the same strategies in their strive toward a good everyday life.

Key findings

Important strategies toward a gratifying everyday life in people with Parkinson’s disease are daily scheduling, adapting performance and keeping up in both mind and body.

The strategies used to achieve a good everyday life were the same in women and men.

What the study has added

This study extends occupational therapists’ knowledge about the importance of a client-centred, disease-competent approach, which includes medication regime, adapting of performance and the importance of engaging in pleasurable activities to support PwPD in keeping up an enjoyable everyday life.

Footnotes

Research ethics

Ethical approval was granted by the local ethical board at Umeå University, (D. No: 2012-36-32 M).

Consent

All participants provided written informed consent to be interviewed for, and have their anonymised data used in the research study.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship and publication of this article: The Swedish Research Council Dnr. 2009-5833, Dnr. 2012-5210 and The Parkinson Foundation in Sweden.

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