Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Rastgardani, Tara; Armstrong, Melissa J.; Marras, Connie; Gagliardi, Anna R.

doi:10.1111/hex.12884

Cited by 17 publications

(11 citation statements)

References 34 publications

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“…It is interesting that a higher proportion of carepartners reported recalling discussion of all aspects of OFF periods than patients, suggesting incomplete recall on the part of more patients and supporting the value of carepartner involvement. Our qualitative interviews also support the perceived value of carepartner input by all parties and the desire for carepartners to be part of the discussion (16). It was clear from those interviews, however, that they are often not included in the conversation.…”

Section: Discussionsupporting

confidence: 64%

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

et al. 2019

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Background: OFF periods impair quality of life in Parkinson's disease and are often amenable to treatment. Optimal treatment decisions rely on effective communication between physicians, patients and carepartners regarding this highly variable and complex phenomenon. Little is published in the literature about communication about OFF periods. Methods: Informed by interviews with physicians, patients and carepartners we designed questionnaires for each group. We surveyed these parties using an online platform to investigate the frequency, content and ease of communication about OFF periods and barriers and facilitators of communication with physicians. Results: Fifty movement disorder neurologists, 50 general neurologists, 442 patients and 97 carepartners participated. A free-flowing dialogue is the mainstay of communication according to all parties. Motor aspects of OFF periods are discussed more frequently than non-motor aspects (90 vs. <50% according to both general neurologists and movement disorder neurologists). The most common physician-reported barriers to communication are patient cognitive impairment, patient difficulty recognizing OFF periods and poor patient understanding of OFF periods' relationship to medication timing. The barriers most commonly cited as major by patients were that they perceived OFF periods to be part of the disease (i.e., not a clinical aspect that could be improved by a physician), variability of symptoms, and difficulty in describing symptoms. The most commonly described facilitator (by physicians) was the input of a caregiver. Positively viewed but less commonly used facilitators included pre-visit questionnaires or diaries, digital apps and wearable devices to monitor fluctuations. The majority of patients and carepartners identified a free-flowing dialogue with their physicians and having an agenda as helpful facilitators of communication about OFF periods which they already use. The majority of both groups felt that keeping a diary and pre-visit questionnaires were potentially helpful facilitators that were not currently in use. Conclusions: Perceived barriers and facilitators to communication about OFF periods are different between health care providers and receivers of health care. Modifiable barriers and facilitators that could be implemented were identified by both groups. Future research should develop and test strategies based on this input to optimize communication and thus clinical care for this common and debilitating problem.

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Section: Discussionsupporting

confidence: 64%

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

et al. 2019

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“…Although the reduction in symptoms was something she enjoyed, she reported feeling certain social distance from people who had not experienced undergoing DBS. Nevertheless, the improvement in PD symptoms did not led her to experience radical adjustment problems or behavioral changes negatively affecting her as shown in other studies [50,52,69].…”

Section: Discussionsupporting

confidence: 63%

“…The FCs (especially in the case of spouses) are not only emotionally involved in the illness of their loved ones, but they also provide care at home. Not only do they need to learn to manage the internal impact on their lives that the fact that their spouses have a chronic illness has, in most cases, they also adapt their routines to assist their loved ones in different tasks, such as helping with personal care and hygiene, managing the patient’s treatment, or organizing medical appointments [ 50 , 52 , 69 ]. In most cases, they are a great source of support and understanding for patients [ 49 , 70 ].…”

Section: Discussionmentioning

confidence: 99%

“…We applied a multimodal approach by means of narrative semi-structured interviews and drawings to better understand how they experience life with PD and DBS and the impact of both on their personal and social lives. We decided to include the point of view of family caregivers (FCs) because their experiences are a highly valuable source of knowledge for two reasons [ 49 , 50 ]. First, FCs are sometimes more sensitive to changes in the patients caused by either disease or therapy than patients themselves, and hence their experiences are of great value to complement the patient’s account [ 51 ].…”

Section: Introductionmentioning

confidence: 99%

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Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Gámez

Brugger

Biller‐Andorno

2021

IJERPH

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Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.

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“…To address symptom-related disabilities of PD, design guidelines for touch screen gestures have been suggested [ 55 ], as well as calibration of touch screen sensitivity [ 56 ]. Previous research also emphasizes the important role of informal caregivers in supporting self-care and symptom assessments [ 57 , 58 ]. Acknowledging caregivers’ role in self-care, it has been suggested that eHealth services for PD should be designed to support collaboration between PwP and their informal caregivers [ 59 ].…”

Section: Discussionmentioning

confidence: 99%

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

Wannheden¹,

Revenäs²

2020

J Med Internet Res

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Background Worldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. Objective This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. Methods Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). Conclusions This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID) RR2-10.2196/11278

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Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Cited by 17 publications

References 34 publications

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

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