Occupations to Enhance Responsibility Among Patients With Parkinson’s Disease: An International Delphi Study

Method

Participants

To recruit participants, a preliminary email describing the aim of the study, detailed information the study’s purpose, and instructions was sent to renowned experts in the management of PD. Our objective was to recruit a group of international experts with various professional backgrounds, including physical therapists, occupational therapists, speech-language pathologists, general practitioners, neurologists, neuroscientists, psychologists, and psychiatrists. Professionals were invited (1) if they were clinicians or researchers and (2) had the ability to read and write in the English language. Health professionals were identified through their research interests, clinical expertise, and recently published articles and through academic university profiles and occupational therapy and physical therapy association lists (Association of Occupational Therapists of Ireland, Canadian Association of Occupational Therapists, WA Occupational Therapy Association, Australian Physiotherapy Association, Occupational Therapy Australia) by means of a Google search.

According to de Villiers et al.’s (2005) recommendations, participants were considered eligible if they were clinicians or researchers with the professional qualifications required for diagnosis or management of people with PD. Participants were allowed to contact us if they had questions while completing the questionnaires. Approximately 669 potential participants were invited through the invitations disseminated by email. According to the Consensus-based Standards for the Selection of Health Measurement Instruments recommendations, we planned to enroll at least 100 experts in the first round (Terwee et al., 2018), and 116 experts agreed to participate in the first round of the study (Figure 1).

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Figure 1.

Flow diagram of the stages of the Delphi process.

Results

In the first round, responses were obtained from 116 international experts from 16 countries with a variety of geographical locations. Ninety-five (81.89%) participated in the second round. The experts’ mean age and years of experience were 36.93 (SD = 12.19) and 8.39 (SD = 7.60), respectively. The majority of respondents were occupational therapists (n = 76; 65.51%). Experts were clinicians, researchers, or both. The demographic characteristics of the Delphi panel are summarized in Table 1.

In the first round, consensus was reached on 19 of 77 occupations. Also, consensus was achieved regarding all 38 types of patient-related information. Five types of patient-related information—“living alone or with others,” “severity of activity limitations,” “balance disorders,” “cognitive function,” and “psychological disorders”—were considered very important when choosing an occupation with an emphasis on the concept of responsibility for intervention (Table 2 and Appendix Table A.1).

In the second round, consensus was reached for all the presented occupations and types of patient-related information. Moreover, consensus was reached on additional occupations and types of patient-related information proposed by respondents. Of the 16 additional types of patient-related information, “on and off medication phases,” “motivation,” and “reliance on rehabilitation” were deemed very important. “Social interactions with other people with PD” and “leisure and recreational interests” were also considered to be important. However, “having children,” “family problems, such as financial issues,” “living in urban or rural areas,” “awareness of the disease,” “self-confidence,” “awareness of the concept of responsibility,” “culture,” “pragmatism in managing symptoms,” “availability of support based on location,” “ecological status in place of residence, such as pollution,” and “presence of domestic animals” were regarded as uncertain.

In subgroup analyses, the ratings of the level of inherent responsibility for each occupation were similar regardless of profession, panelists’ gender, years of experience, and Hoehn and Yahr Scale stage of PD of patients with whom they most frequently worked. We found no significant difference among experts in regard to region of practice in all occupations, except “going to clinical appointments and maintaining contact with health care practitioners” (p = .001), “feeding pets at home” (p = .011), “planning a routine for meaningful activities” (p = .002), “engaging in leisure activities” (p = .044), “gathering information about their disease” (p = .004), “doing physical activities or walking” (p = .0001), “making sure about safety” (p = .022), “present[ing] a book, film, etc. [to] family members/friends” (p = .002), “disseminating useful and practical contents” (p = .024), and “remembering to drink 8 glasses of water daily” (p = .003).

In addition, panelists reached consensus on all types of patient-related information regardless of whether they were occupational therapists or male. However, we found a difference in the number of types of patient-related information on which consensus was reached for physical therapists and female experts. Physical therapists reached consensus on all of the patient-related information except for “presence of domestic animals” (IQR = 1.5), “having children” (IQR = 2.0), and “gender” (IQR = 3.0). Furthermore, female panelists reached consensus on all types of patient-related information except for “personality type,” “PD onset,” and “having children” (IQRs = 2.0). Panelists with 2 to 4 yr of experience in PD management reached consensus on all patient-related information except for “personality type” (IQR = 1.5). Panelists who work most frequently with people living with Hoehn and Yahr Scale Stages 2 and 3 of PD reached consensus on all patient-related information except for “personality type” and “marital status.”

Discussion

Through a two-round Delphi procedure involving heterogeneous health specialists in PD management, occupations were rated on their inherent sense of responsibility. Sixty-one occupations were deemed as having a moderate to very high inherent sense of responsibility. In addition, our results showed that experts consider a wide range of patient-related information as very important or important when selecting an occupation that has the potential to enhance a sense of responsibility.

In the second round of the study, we found changes in the median scores of several occupations, which were influenced by the input from the first round’s response data. “Responsibility for remembering his/her own medication hours” was considered an occupation with very high inherent responsibility. This finding is in line with the results of Grosset and Grosset’s (2007) study, which indicated that the timing of medication usage is potentially important in PD management. Furthermore, medication management interventions have been recognized in occupational therapy practice as ameliorating occupational participation (AOTA, 2017 ; Foster et al., 2021). Thirteen occupations, such as “maintaining personal hygiene,” “dressing and undressing his/her own [self],” and “personal device care” were deemed to have high inherent responsibility. Also, 47 occupations, such as “home maintenance,” “taking out garbage from home,” and “washing his/her own clothes,” were considered to have moderate inherent responsibility. In a Delphi survey of best occupational therapy practice for people with PD, Deane et al. (2003) reported that more than 95% of occupational therapists would focus their intervention on improving or maintaining domestic skills, washing, and dressing, which is in line with the results of the current study. Wannheden and Revenäs (2020) reported that health professionals expect people living with PD to take responsibility for activities that are important for their health and to be more independent in self-care activities. Rehabilitation is an ongoing process, and clients should feel a sense of responsibility in the intervention process (Baskett et al., 1999). Moreover, increased patient involvement creates greater responsibility, which leads to increased motivation and participation (Grosset et al., 2005; Li et al., 2011).

Significant differences in ratings of some occupations between experts in different regions of practice may be explained by each country’s different cultures and social contexts. Patients residing in distinct contexts may have a different inherent sense of responsibility in these occupations as a result of diverse circumstances.

Dosing in rehabilitation is a critical element with different parameters, such as frequency, intensity, and duration (Jette, 2017). Evidence does not support low-dose occupational therapy (i.e., using occupations that have a low or very low inherent sense of responsibility) for people with PD (Clarke et al., 2016). Occupational therapy dose is dependent on the client’s goals and progress through the intervention process (Sackley et al., 2009). Occupations can be graded and modified to fit the client’s abilities, capacities, and interests as well as to provide the potential for promotion of occupational performance (Che Daud et al., 2015). Occupational therapy services should be organized with respect to clients’ changing needs and abilities as a result of the progressive nature of the disease (Deane et al., 2003).

Patient-related information is associated with occupational therapy service delivery (Sackley et al., 2009). Our results regarding patient-related factors associated with rehabilitation are supported by previous findings (Lam Wai Shun et al., 2017; Malcolm et al., 2021; Oyake et al., 2020). Further research is needed to explore the occupation-focused interventions that occupational therapists deliver on the basis of client factors.

Consensus-based procedures are recognized as providing a lower level of evidence than experimental designs, such as randomized controlled trials (Atkins et al., 2004). Therefore, future research is required to move beyond this Delphi study and augment the implementation of occupation-focused interventions. We recommend that future experimental studies be required to translate this research into clinical practice.

Strengths and Limitations

The findings from this Delphi study represent the multinational consensus of experts from multiple countries with geographical variations in clinical practice. The Delphi process was executed rigorously in terms of using open-ended and closed-ended questions, anonymity, statistical feedback, an a priori criterion of consensus, and adherence to CREDES recommendations (Hohmann et al., 2018; Jünger et al., 2017). The majority of respondents were occupational therapists (65.51%), which is an important strength of the current study because of occupational therapists’ overall clinical role in client-centered and occupation-focused practice.

The results of the current study should be interpreted in light of the limitations of the Delphi methodology. First, the majority of the panelists were recruited from the Middle East (62.0%), which may limit the generalizability of our findings. Second, several professional disciplines had a small number of contributors. Thus, their viewpoints might be understated in the present data. Third, the study data consist of the opinions of experts in this field. In particular, we are unable to specify how experts determined their stated rating for the level of inherent responsibility in each occupation. Fourth, few occupations related to education, work, and leisure were proposed. The level of responsibility inherent in each occupation is idiosyncratic. Therefore, future studies are needed to investigate how people living with PD experience responsibility while participating in occupations. Fifth, communication with experts when questions were raised was conducted by email, which led to limited opportunities for interaction.

Implications for Occupational Therapy Practice

The results of this study have the following implications for occupational therapy practice:

▪ Occupational therapy practitioners can use the list of occupations in providing occupation- focused care for clients with PD when choosing occupations as a means or an end.

Conclusion

To conclude, 61 occupational categories were deemed as having a moderate to a very high inherent sense of responsibility for people with PD. In addition, a wide range of patient-related information is considered very important or important while delivering these occupation-focused interventions. The outcome of the current study will help occupational therapists strengthen their current practice by considering the concept of responsibility.