Barriers and facilitators to people with Parkinson’s disease and carers being active members of the health team

Ms Mary Danoudis1,2, Assoc Prof Rosemary Higgins3,4,5, Prof Robert Iansek1,2

1Monash Health, Kingston Centre, Parkinson’s Foundation Center of Excellence, Cheltenham, Australia, 2Faculty of Medicine, Nursing and Health Sciences, School of Clinical Sciences, Monash University, Clayton, , Australia, 3Deakin University School of Psychology , Burwood, Australia, 4The University of Melbourne School of Health Sciences, Carlton, Australia, 5Australian Centre for Heart Health, North Melbourne, Australia

Involvement in health care decision making is associated with improved treatment outcomes and increased patient satisfaction. A survey of the health care experiences of over 80 people with Parkinson’s disease (PD) attending a Melbourne movement disorders program showed involvement in decision making was rated as their poorest health care experience.
This current study aimed to explore in more detail the consultation experiences of patients and carers from the service and to identify strategies to improve this experience.

This qualitative study used recorded focus groups with people with PD and their carers. The focus group schedule covered varying topics including relationships with health professionals, barriers to satisfactory consultations and strategies used by patients and carers to improve the consultation process. Twenty two participants attended the focus groups, 11 with PD, mean age 72.7 years (SD 9.1) and 11 carers, mean age 70.1 years (SD 10.7). Focus groups were audio recorded and transcribed. Qualitative thematic analysis was used to identify key themes.

Themes identified highlighted the importance of a respectful relationship and a shared partnership.
Challenges experienced during consultations included issues with communication, time constraints and difficulty accessing relevant information. Respondents reported using various strategies to improve the consultation process, including having a checklist, setting goals and clarifying their needs.

People with PD and carers developed a range of strategies to ensure greater involvement in the consultation process. These strategies may inform patient and health professional training aimed at maximising patient involvement in care and decision making processes.


Ms Mary Danoudis is the Research Physiotherapist with the Clinical Research Centre for Movement Disorders and Gait (CRCMDG), the research department of the Monash Health Kingston Centre Movement Disorders Program.

Mary Danoudis has been the lead and co-investigator for several research projects in the field of movement disorders. Her most recent works include lead investigator of the survey of the health care experiences of people living with Parkinson’s disease; principal investigator for the evaluation of an evidence based community gym program for people with PD and lead investigator for the patient driven development of the Monash Health Movement Disorders Program website. Ms Danoudis has over 20 peer-reviewed publications and several book chapters relating to the specialized area of movement disorders.

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