Formative Evaluation And Pilot-Testing Of A Communication Program For People With Parkinson's Disease
Health professionals and people with Parkinson’s disease both agree that lapses in communication interfere with efficient and effective health care. The Talk4HealthCare program was developed with the aim of helping people with Parkinson's disease to have a collaborative healthcare journey by improving their knowledge, self-efficacy, health communication, and health service navigation. The aim of this thesis was to assess the potential of the program for further development and investment in terms of fit with literature, expert opinion, feasibility, and effect. This aim was achieved through three studies: scoping review, formative evaluation and pilot testing. A scoping review was conducted that provided theoretical justification for the program and helped in the refinement of the program. We found person-level and system-level barriers prevent people with Parkinson’s disease from accessing healthcare. Communication barriers may arise at both levels. A formative evaluation was conducted by contacting fifteen Parkinson’s disease experts (people with Parkinson’s n=5, healthcare professionals n=4, educators n=4, family members n=2). These experts took part in semi-structured focus group or individual interviews and indicated that the program covered essential and significant topics to promote communication skills through a well-designed format. They recommended changes to adapt the program to the physical needs of people with Parkinson’s disease. The program was thus refined and prepared for the pilot test. A pilot test, using a multiple-methods study design, tested feasibility and achievement of outcomes, and a qualitative study was aimed to obtain feedback from the participants. Eight people with Parkinson’s disease (median age 72 years; male: female = 3:5) were recruited from Parkinson Canada. Data collection took place by administering questionnaires and telephone interviews. The pilot study showed a large effect size for knowledge (0.59) and communication skills (0.51), and moderate effect size for self-efficacy (0.25). The participants of the pilot study found that the program well organized with appropriate content and format. Overall, the program was found to be consistent with the literature; acceptable to Parkinson’s Disease experts, feasible to implement, and effective in improving the communication skills. The efficacy of the program should be tested in a further study with larger sample size.