Everyday Occupations and Other Factors in Relation to Mental Well-Being among Persons with Advanced Parkinson’s Disease

Abstract

This cross-sectional study investigated performed activities and the level of satisfaction with everyday occupations among people (n = 67) with advanced Parkinson’s disease (PD), and how these factors and experiences of social relationships were related to mental well-being. Managing one’s hygiene and physical exercises were activities that the majority still performed, whereas few were engaged in work or other productive occupations. Perceived health problems and satisfaction with everyday occupations were important factors for mental well-being since satisfaction with everyday occupations may be an important focus for occupational therapists and other health professionals when supporting mental well-being among persons with advanced PD.

Keywords:

• Device-aided therapy
• everyday occupations
• health
• mental well-being
• occupational therapy
• Parkinson’s disease

Parkinson’s disease (PD) is a progressive neurodegenerative disorder that affects people’s lives in many respects, not least the everyday occupations they need and want to perform. PD also has adverse impacts on mental well-being, including quality of life (Sturkenboom et al., 2014). Research that addresses occupation among persons with PD has mainly focused on occupational therapy assessments (Gaudet, 2002), interventions addressing physical/functional occupational performance (Tickle-Degnen, Lur, & Pickett, 2015), or cognitive aspects (Foster & Hershey, 2011). The outcomes of such interventions have been promising in terms of improved physical performance skills and improved occupational performance (Foster, Bedekar, & Tickle-Degnen, 2014; Murphy & Tickle-Degnen, 2001; Sturkenboom et al., 2014).

Although evaluation of existing interventions is of great importance, it is also imperative to explore and describe regularly performed everyday occupations among persons with PD. Knowledge about how they perceive and value their everyday occupations, as well as various associated factors, may serve as a backdrop to new ideas for psychosocially oriented support and refinement of current interventions. Research with an everyday perspective has far shown that occupations may be a source of physical, psychological, social and spiritual experiences and that loss of occupations entails reduced autonomy and worse quality of life (Murdock, Cousins, & Kernohan, 2015). Studies are rare in this context and there appears to be no published research with a quantitative perspective focusing on how people with PD experience their everyday occupations, including the role of occupation in relation to other factors for mental well-being in this group.

When people have the opportunity for engaging in occupations they perceive as valued, satisfying and meaningful, they experience better mental well-being. This has been shown for a variety of target groups, such as the general population (Law, 2002), people with rheumatic diseases (Sandqvist, Åkesson, & Eklund, 2005), pain syndromes (Persson, Rivano-Fischer, & Eklund, 2004) and mental disorders (Bejerholm & Eklund, 2007; Goldberg, Britnell, & Goldberg, 2002), but so far not for people with PD. Mental well-being is, in this context, defined as “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community” (WHO). Similarly, performing occupations, the “doing” per se, has been found to be linked to mental well-being (Eklund & Leufstadius, 2007; Persson et al., 2004). For people with mental disorders, the link between occupation and mental well-being seems less pronounced among those with more severe disorders (Eklund & Tjörnstrand, 2019). Consequently, one cannot assume that there is a clear-cut link between occupational factors and mental well-being for all target groups, and people with PD should be addressed specifically. Furthermore, when exploring the relationship between everyday occupations and mental well-being it is important to focus on relevant indicators of mental well-being. Anxiety, apathy, depression and psychotic symptoms, which are common among persons with PD in general, have been found to be strongly correlated with well-being in terms of quality of life, as strongly or even stronger than in terms of the motor symptoms defining the disease (e.g., hypokinesia, rigidity and tremor) (Martinez-Martin et al., 2007; Odin & Dietrich, 2011). Absence of psychiatric symptoms could therefore be considered as an indicator of mental well-being.

Another factor of potential importance for mental well-being are social relationships, and there are some indications that relationships with others may be particularly important for people with more severe disorders, as shown among persons with mental disorders (Eklund, Argentzell, Bejerholm, Tjörnstrand, & Brunt, 2017; Eklund, Hermansson, & Håkansson, 2012). Social relationships are thus another factor of potential relevance for mental well-being among people with advanced PD (Simpson, Haines, Lekwuwa, Wardle, & Crawford, 2006). Finally, there is research regarding the relationship between clinical and socio-demographic factors and mental well-being among persons with PD. One factor known to be of importance for mental well-being among people with PD is health status (Martinez-Martin et al., 2007). Brown et al. (2011) found that female gender, younger age, younger age at onset of PD and greater level of disability were associated with depression and anxiety-related symptoms. Conversely, male patients, older age, older age at onset and shorter disease duration, had an overall lower probability of symptoms of depression and/or anxiety. Other research, however, has shown that a later onset of PD was associated with anxiety and cognitive dysfunction (Špica, Pekmezović, Svetel, & Kostić, 2013).

Previous research has indicated that the importance of occupations for mental well-being may differ between groups with disorders of varying severity (Eklund & Tjörnstrand, 2019), which made us consider PD severity when deciding the target group for this study. We chose people with advanced PD since they are likely to experience reduced mental well-being (Poewe, 2008). When people with PD reach an advanced phase, oral medical treatment is not sufficient to control motor fluctuations and device-aided PD therapy is introduced as a supplementary treatment (Odin et al., 2015). Receiving device-aided therapy can therefore be used as a criterion for advanced PD. Such therapy refers to an implant, either electronic stimulation of the brain or a percutane endoscopic gastrostomy for the infusion of medication (Timpka, Nitu, Datieva, Odin, & Antonini, 2017). The device-aided therapy is effective in counteracting motor fluctuations and dyskinesia, often making psychiatric and cognitive symptoms more prominent (Nyholm, Klangemo, & Johansson, 2012). Thus, the aims of this explorative study was to describe currently performed occupations and the level of satisfaction with everyday occupations among people with advanced PD, and to investigate how these factors and experiences of social relationships were related to mental well-being in this group. This knowledge would be vital in further developing and refining occupational therapy interventions for people with PD.

Methods

This was a quantitative, descriptive, cross-sectional study among people with device-aided therapies for advanced PD who were patients at two hospitals in Sweden and one in Denmark. Convenience sampling was applied. The criterion of device-aided therapy was set to ensure a sample with advanced PD. The Regional Ethical Review Board at Lund University approved the Swedish part of the study. According to Danish legislation, the study’s design did not warrant any ethical approval for participants from the Danish hospital. All study participants received oral and written information about the study and provided their written informed consent. The data collection was performed between September 2016 and August 2017.

Participants

The present study was part of a larger project investigating workforce participation and activities among people with advanced PD (Sahlström et al., 2018). The age limit for retirement is 67 years in Sweden and Denmark. Therefore, the inclusion criteria were people with advanced PD with an introduction to device-aided therapy at an age under 68 years and having received it for one or more years. The device-aided therapy consisted of deep brain stimulation (DBS), continuous subcutaneous apomorphine infusion (CSAI) or levodopa-carbidopa intestinal gel (LCIG), identified by their treating neurologist or the Swedish national Parkinson patient registry (ParkReg). The exclusion criteria included severe dysarthria and/or dementia (assessed by the treating neurologist, who also supplied the contacts). Eligible persons (N = 114) were sent written information about the study, together with a consent form. They were asked to sign the form and return it by mail. Those who consented this way were then contacted for a telephone interview. Forty-seven persons were excluded in all, based on their unavailability or unwillingness to participate or further detection of severe dysarthria (during the interview attempt). This resulted in a total of 67 participants and a response rate of 59%. Socio-demographic and clinical characteristics of the participants are displayed in Table 1. The participants are hereafter named as people with advanced PD.

Table 1. Demographic and clinical characteristics of the participants.

Characteristics
n (F/M)	67 (26/41)
Age, mean (min-max)	62.3 (47–73)
Years since diagnosis, mean (min-max)	17.2 (7–25)
No. of participants with DBS/ CSAI /LCIG/^¹ mixed	30/11/22/4
Years since start of device-aided therapy, mean (min-max)	5.6 (2–14)
Available to the employment market (yes/no)²	8/58
PDQ-8, mean (SD)	11.4 (5.5)
Mental well-being factors, %
Daytime sleepiness	76%
Hallucinations	31%
Anxiety	24%
Depressive symptoms	31%
Problems with memory and attention	57%
Able to walk without aid in off-periods	40%
Able to walk without live support in off-periods	69%
Able to walk without aid in on-periods	84%
Able to walk without live support in on-period	94%

¹ Deep brain stimulation (DBS), continuous subcutaneous apomorphine infusion (CSAI), levodopa-carbidopa intestinal gel (LCIG).

² Working or on temporary sick-leave was regarded as being available on the employment market whereas disability pension or retirement was not.

Instruments

Well-established questionnaires, as described below were used to address health status, everyday occupations and social relationships. A questionnaire to address socio-demographic factors, including availability to the employment market, and additional questions indicating mental well-being, was devised specifically for this study. The questionnaires were answered during the telephone interview, conducted by author TS.

Perceived health problems

Parkinson’s Disease Quality of Life Questionnaire with eight items (PDQ-8) (Hagell & Nygren, 2007; Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman, 1997) was used to address perceived health status. The items reflect physical capacity, mood, and social and cognitive functioning. The participants rate the frequency with which they experience health problems (never = 0, occasionally = 1, sometimes = 2, often = 3, always or cannot do at all = 4) for each item and the responses are then compiled into a PDQ-8 index by summing the eight items from the PDQ-8 (26). The participants answered the PDQ-8 based on the last month’s symptoms and problems. Psychometric testing of the PDQ-8 has shown acceptable internal consistency and convergent validity (Franchignoni, Giordano, & Ferriero, 2008).

Satisfaction with everyday occupations

The 13-items Satisfaction with Daily Occupations (SDO-13) is divided into four domains: work (items 1–3), leisure (items 4–6), home management tasks (items 7–10) and self-care (items 11–13). For each item, the patient is asked to state if the occupation was performed or not, generating an activity level score (yes = 1, no = 0). Either the patient currently performs the occupation or not, a corresponding satisfaction score rating is made, using a seven-point scale from 1 = extremely dissatisfied to 7 = extremely satisfied. The total activity level score may range from zero to 13 and the satisfaction score from 13 to 91. Psychometric testing of the SDO-13 showed good internal consistency and also confirmed convergent validity (Wästberg, Persson, & Eklund, 2016).

Experience close relationships

The Experiences in Close Relationships-Relationship Structures (ECR-RS) questionnaire has nine items, each of which can be answered in relation to a variety of relationship domains: partner, parents, children and friends (Fraley, Heffernan, Vicary, & Brumbaugh, 2011; Fraley, Waller, & Brennan, 2000). Only the partner relationship was in focus in the current study. The six first ECR-RS items target attachment-related avoidance (items 1–4 reversed) and form one of two subscales. The other subscale is attachment-related anxiety, formed by the last three items. The response scale has seven alternatives, from 1 = strongly disagree to 7 = strongly agree, and a higher rating indicates more of the attachment type addressed in the respective subscales. A validated Danish version of ECR-RS (Feddern Donbaek & Elklit, 2014), and a Swedish version of ECR-RS (Hovelius & Lindén, 2015) not yet psychometrically validated, were used in the study. The Cronbach’s alpha based on the current sample for the two subscales were 0.88 and 0.92 respectively.

Socio-demographic variables

The socio-demographics concerned age, sex, civil status, people in the household and work situation. Included in this questionnaire was also a question on any need for a walking device.

Mental well-being

Five questions targeting mental well-being were posed. They addressed daytime fatigue, hallucinations, anxiety, depression and cognitive dysfunction/inattention. The same questions are used to address non-motor symptoms in the Registry for Parkinson’s disease which is a national quality registry. The participants responded yes or no to these questions, referring to the perceived problems during the past month. These questions thus generated dichotomous variables.

Data analyses

Since the questionnaires produced ordinal data, analyses were mainly non-parametric statistics (Altman, 1993). Arithmetic mean and standard deviation (SD) were use to describe central tendency and dispersion. The Mann-Whitney U-test or the Kruskal Wallis test were employed to compare independent groups on ordinal data and the Chi-square test for categorical data. Bivariate associations were calculated by Spearman correlations. Multivariate logistic regression analyses were then performed to investigate the simultaneous influence of occupational and relational factors on the indicators of mental well-being, set as dependent factors, while also controlling for sociodemographic factors in terms of age, gender and availability to the employment market. Type of therapy was used for descriptive purposes only and was not included in the multivariate analyses. Five regression models were performed this way, one for each of the mental well-being factors. The factors with statistically significant associations according to bivariate analyses were set as independent factors (predictors). Goodness of fit for the regression analyses was estimate by the Hosmer and Lemeshow test, which should be non-significant (Altman, 1993). Explained variation in the dependent factor was assessed by the Nagelkerke R square. The cross-sectional design of this study means that no causal relationships could be determined. The term ‘predictor’ is thus used in its statistical notion and only in the context of the logistic regression analyses.

A p-value <0.05 was seen as statistically significant in all analyses and the SPSS software package (“IBM SPSS Statistics 24 core system user's guide” ) was used.

Results

Activity level and satisfaction with everyday occupations

The participants as a group were currently engaged in 7.1 (SD = 2.3) of the SDO-13 occupations (=their activity level). Their mean sum score regarding satisfaction with everyday occupations was 65.3 (SD = 11.1). Age was negatively associated with activity level (r_s = −0.26, p = 0.038), whereas age was unrelated to satisfaction with everyday occupations (p = 0.532). Gender was unrelated to both activity level (p = 0.364) and satisfaction with everyday occupations (p = 0.985). Type of received therapy was not related to activity level (p = 0.409) but showed an association with satisfaction with everyday occupations (p = 0.045). Post-hoc analyses indicated that the DBS group scored higher than the CSAI group (p = 0.033) but not the LCIG group (p = 0.059).

Table 2 shows the proportion of participants engaged in each of the occupations together with their mean satisfaction ratings per item/occupation. Only a few participated in work-related occupations (<20%) and cultural occupations (e.g., concerts, art exhibitions) (30%), whereas approximately 80% took part in self-care occupations and leisure on their own. Organized leisure occupations and home management chores engaged 50–60% of the participants. The ratings of satisfaction with everyday occupations varied between 4.9 (for item 7/doing household work) and 6 (for items 9/organizing the household and item 11/personal hygiene). Although the proportions of participants engaged in the various occupations thus varied, they rated their satisfaction with the everyday occupations fairly similarly.

Table 2. The participants’ involvement in occupations targeted in the SDO-13, presented as share of patients presently performing each type of occupation, and their satisfaction scores (range 1–7) per item in brackets.

Item no.	Percentage (mean rating/SD)	Content of the SDO-13 item
1	18% (5.1/1.8)	Presently employed or enrolled in college/folk high school
2	16% (5.1/1.8)	Working or enrolled in college/folk high school in past 2 months
3	15% (5.7/1.8)	Attending work training in past 2 months
4	60% (5.8/1.3)	Engaged in organized leisure occupations/hobbies at least once a week in past 2 months
5	85% (5.7/1.6)	Performing leisure occupations/hobbies on one’s own at least once a week in past 2 months
6	30% (5.1/1.7)	Taking part in cultural occupations at least once a week in past 2 months
7	67% (4.9/1.7)	Doing household work, such as cleaning and cooking, almost daily in past 2 months
8	51% (5/1.7)	Doing repairs and/or gardening in past 2 months
9	55% (6/1.4)	Organizing and planning the household work in the past 2 months
10	51% (5.3/1.6)	Taking care of children, parent, or other close persons at least once a week in the past 2 months
11	87% (6.0/1.4)	Managing own personal hygiene on a daily basis
12	88% (5.4/1.8)	Doing physical exercises at least once a week in the past 2 months
13	79% (5.7/1.4)	Doing activities to relax at least once a week in the past 2 months

Predictors of mental well-being

Table 3 outlines the independent variables that according to bivariate analyses showed statistically significant associations with the mental well-being indicators targeted for the logistic regression analyses. Neither activity level based on the SDO-13 or work situation, in terms of being available to the employment market or not, showed any statistically significant association with the mental well-being indicators. Similarly, the attachment-related subscales from the ECR-RS did not show any statistically significant association with the mental well-being indicators. Hallucinations showed no association with an occupational or health-related factor and this variable was thus eliminated from the logistic regression analyses.

Table 3. Occupational and health-related factors with statistically significant bivariate associations with the mental well-being indicators.

Variable	Day-time fatigue	Hallucinations	Anxiety	Depression	Cognitive dysfunction/inattention
Satisfaction with daily occupations			rs = −0.392, p = 0.001	rs = −0.321, p = 0.008	rs = −0.301, p = 0.013
Health problems	rs = −0.252, p = 0.039)		rs = 0.39, p = 0.001	rs = 0.483, p < 0.001	rs = 0.301, p = 0.013
Ability to walk without aids			rs = 4.06, p = 0.044

The logistic regression models performed are presented in Table 4. All of these had only one final independent variable. Health problems explained 10% of the total variation in daytime fatigue. For each increased scale step in perceived health problems, the odds for daytime fatigue increased by 13% as indicated by the odds ratio of 1.13. Hosmer and Lemeshow test was insignificant (p = 0.520) and thus indicated good fit. The model predicted 74% of participants to the correct groups of reporting/not reporting daytime fatigue.

Table 4. Occupational and health-related factors predicting mental well-being factors among people with PD, while controlling for age, gender and availability to the employment market.

Mental well-being factors, significant predictors and explained variance (%; Nagelkerke R Square)	Wald	p-value	Odds ratio	95% CI
Daytime fatigue (10%) Health problems (PDQ-8)	4.06	0.044	1.13	1.03–1.26
Anxiety (26%) Satisfaction with occupations (SDO)	9.60	0.002	0.91	0.85–.97
Depression (31%) Health problems (PDQ-8)	11.77	0.001	1.26	1.11–1.45
Cognitive dysfunction/inattention (13%) Health problems	6.09	0.009	1.13	1.25–1.25

Satisfaction with everyday occupations was the significant predictor of reported anxiety, explaining 26% of the variation. For each increased scale step on occupational satisfaction the odds for perceiving anxiety was reduced by about 9%. The Hosmer and Lemeshow test was insignificant at p = 0.498 and the model predicted 80% of the participants correctly.

Perceived health problems, which could explain 32% of the variation in reported depression, showed an odds ratio indicating an increased risk for depression of 26% for each increase in score on health problems. An insignificant Hosmer and Lemeshow (p = 0.707) indicated good model fit and 73% of the participants were predicted to the right group of reporting/not reporting depression.

Health problems explained 13% of the variance in cognitive dysfunction/inattention. For each increased scale step, the odds for belonging to the group reporting cognitive dysfunction/inattention increased by 25%. Hosmer and Lemeshow test was insignificant at p = 0.558, indicating good fit of a model that predicted 67% of the participants correctly.

Discussion

This study explored performed activities and satisfaction with everyday occupations among people with advanced PD, and investigated how occupational factors and experiences of social relationships and health were related to mental well-being. Socio-demographic factors were also addressed. To the authors’ knowledge, these relationships have not been targeted previously in research among people with PD at any stage of the illness. As the study had a cross-sectional design, associations were explored but no causal relationships could be determined.

Activity level and satisfaction with everyday occupations as operationalized in the SDO-13 do not appear to have been investigated among people with PD in previous research, which thus makes comparisons with other studies difficult. Moreover, no comparable study has been found regarding the involvement in different types of occupations for this group. The current findings show that only a few participants were currently involved in work-related occupations, which appears to be a logical finding, considering both the severity of PD and the age of the participants. Managing one’s hygiene and physical exercises were occupations that the majority of the participants still performed. As these occupations have shown to be linked with autonomy and preventing deteriorated physical functions (Giladi, 2009; Miertová, Tomagová, Jarošová, & Kiabová, 2014; Soleimani, Negarandeh, & Bastani, 2015), it is possible that they had high priority for the participants.

Regarding the participants’ satisfaction with everyday occupations, similar ratings (central tendency of 4–6 for separate items) were found among both women with scleroderma and healthy women (Sandqvist et al., 2005). Moreover the SDO-13 ratings in the current study indicated that the participants valued the occupations fairly equally regardless whether a larger or smaller proportion of the participants were engaged in the occupation. All participants rated their satisfaction, including those who did not currently perform the occupation in question. Accordingly, a person can be pleased with not performing an occupation, which has also been shown in research among people with mental illness (Eklund, Bäckström, & Eakman, 2014).

Higher satisfaction with everyday occupations showed to be associated with lower levels of anxiety, depression and cognitive dysfunction/inattention. The multivariate analysis showed that satisfaction with everyday occupation was a significant predictor of anxiety, reducing anxiety with 9% for every increased scale step of satisfaction. The results are in line with previous research where satisfaction with everyday occupations has been shown to be important for mental well-being in various populations (Eklund & Sandqvist, 2006; Hultqvist, Wästberg, & Eklund, 2017).

Furthermore, the results showed that activity levels were not associated with any of the targeted mental well-being indicators. This finding is in line with research among people with mental illness, showing only weak correlations between people’s actual doing and well-being factors, but strong associations between satisfaction with occupations and well-being (Eklund & Leufstadius, 2007). Our findings suggest that occupational therapists working with people with PD can support their clients’ mental well-being by considering their satisfaction with everyday occupations.

The results further showed that perceived health problems were associated with anxiety, depression, cognitive dysfunction/inattention and day-time fatigue, which is supported by previous research (Lutz, Holmes, Ready, Jenkins, & Johnson, 2016; Nicoletti et al., 2017). Perceived health problems also showed to be a predictor of depression and day-time fatigue in the multivariate analyses. These results suggest that occupational therapy interventions striving to improve health in general among people with advanced PD (operationalized as physical capacity, mood, and social and cognitive functioning in the present study) might be more effective when also addressing additional important factors for mental well-being, such as satisfaction with everyday occupations.

Ability to walk without aids showed a bivariate association with anxiety (Table 3). This supports research showing that people with PD with a gait dysfunction were more likely to experience anxiety (Dissanayaka et al., 2010; Martens, Ellard, & Almeida, 2014), but the association did not become significant in the multivariate analysis.

Mental well-being is not only important for the person itself. Research has shown that symptoms of depression and hallucinations in people with PD increase caregiver stress (Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2006) and impede the caregiver’s quality of life (Martínez-Martín, Guerrero-Díaz, & Frades-Payo, 2004), which in turn is likely to negatively affect the informal care and the quality of life of the person with PD (Oguh, Kwasny, Carter, Stell, & Simuni, 2013; Schrag et al., 2006). Additionally, research comparing the effects of the person’s non-motor and motor symptoms on caregiver health, found that the symptoms of depression and cognitive impairment had a greater impact on a caregiver’s depression and burden than the physical disability (Carter, Stewart, Lyons, & Archbold, 2008). This adds to the importance of occupational therapists prioritizing factors of relevance for the person's mental well-being (Forjaz, Chandiramani, & Martinez-Martin, 2011). Potentially, this may be even more significant when considering people with advanced PD, as the demands on the caregiver increase. A common observation clinically is that those who receive device-aided therapy experience a significant improvement in motor symptoms making the non-motor symptoms more prominent (Nyholm et al., 2012).

Finally, in terms of being available to the employment market or not, work situation did not show any statistically significant association with the mental well-being indicators. Nor did the attachment-related subscales from the ECR-RS, or any of the demographic factors, indicate any significant associations.

Research shows that occupational therapy treatment and management of PD tend to focus primarily on physical/functional occupational performance (Tickle-Degnen, Ellis, Saint-Hilaire, Thomas, & Wagenaar, 2010), thus the impact of non-motor problems, such as mental health problems, may be under-recognized and under-treated (Gibson, 2016). The results of this study suggest occupational therapists should consider and prioritize psychosocial factors (i.e., mental well-being, satisfaction) when planning and implementing everyday occupations interventions for people with advanced PD. Further research about how people with advanced PD perceive and value their everyday occupations appears to be warranted. A British study by Deane, Ellis-Hill, Dekker, Davies, and Clarke (2003) showed that occupational therapists working with the target group may lack the knowledge, or skills, to include psychosocial aspects into their practice, and one can speculate that this is possibly accentuated by organizational issues. More knowledge in these respects could lead to a refinement of current interventions, and support, for people with advanced PD and their caregivers.

Application to occupational therapy practice

The present study could identify both perceived health problems and satisfaction with everyday occupations as important factors for mental well-being. Occupational therapists and other health professionals thus need to address issues on several fronts simultaneously. This is line with previous research, proposing that occupational therapists working with people with PD should strive to integrate psychosocial aspects into their practice (Deane et al., 2003). This inclusion of psychological and social aspects in the occupational perspective means that occupational therapists should be able to identify strengths and limitations regarding psychosocial issues associated with PD, for example coping skills, self-efficacy and locus of control (Montel, Bonnet, & Bungener, 2009; Rosqvist et al., 2017; Zampieri & Pedroso de Souza, 2011). According to the findings from the present study and from previous research, addressing satisfaction with everyday occupations in interventions focusing on physical occupational limitations, while also considering psychosocial aspects, could be a relevant supplement to support mental well-being among people with PD.

Limitations

The cross-sectional design of this study prevents conclusions about causal associations; research with a longitudinal design would be needed. Furthermore, people who were too affected by their disease, for example by dysarthria, could not participate in this interview-based study and their perspective is thus not included in this study. Moreover, since our target group were people with PD who receive device-aided therapy, and our sample was fairly young, the generalizability of the study is limited, and the results should not be applied to persons not undergoing the same treatment procedures.

The well-being aspects were assessed with only one item each. Although one-item measures have been found valid and reliable (Bowling, 2005), it is also acknowledged that several items render a more robust estimate of a phenomenon (Streiner, Norman, & Cairney, 2015).

Several analyses were performed, entailing a risk of mass-significance. Since this was primarily an explorative study, no corrections for mass-significance were made. However, values close to 0.05 should be interpreted with caution.

Conclusion

The present study could identify both perceived health problems and satisfaction with everyday occupations as important factors for mental well-being. Occupational therapists and other health professionals need to address these issues simultaneously. Further research about how people with advanced PD perceive and value their everyday occupations appears to be warranted to inform practice, and possibly lead to refinement of current interventions and support for persons with advanced PD and their caregivers.

Declaration of interest

JT has served as a consultant to AbbVie. DN and PO have received lecture fees from AbbVie and Nordic InfuCare. TH has received honorary for lectures for AbbVie, EVER Pharma and Nordic InfuCare. JH, TS, and ME have no conflict of interest.

Acknowledgments

This study was accomplished within MultiPark—A Strategic Research Area at Lund University, Lund, Sweden—and the Swedish Parkinson Academy.

Data availability

The data that support the findings of this study are available on request from the corresponding author JH. The data are not publicly available due to restrictions in Swedish legislation, the Swedish Act regarding the Ethical Review of Research Involving Humans.

Additional information

Notes on contributors

Per Odin

ME and PO designed the study and TS performed the data collection. ME performed the statistical analyses and JH and ME drafted the manuscript. All authors reviewed the draft versions critically and approved of the final manuscript.

Mona Eklund

ME and PO designed the study and TS performed the data collection. ME performed the statistical analyses and JH and ME drafted the manuscript. All authors reviewed the draft versions critically and approved of the final manuscript.