Coherence and incoherence: doctors' and patients' perspectives on the diagnosis of Parkinson's Disease (original) (raw)

Patient experiences of receiving a diagnosis of Parkinson’s disease

Journal of Neurology, 2018

Objective To report patients' own experiences of receiving a diagnosis of Parkinson's disease (PD) and to identify factors influencing this experience. Methods A survey by the European Parkinson's Disease Association in 11 European countries. Results 1775 patients with an average age of 69.7 years participated of whom 54% were male. Those living in rural areas reported having waited longer to seek medical help (p < 0.05). A possible diagnosis of PD was made at the first appointment in a third of respondents. When the diagnosis was made, only 50% reported that the diagnosis was communicated sensitively. 38% of patients reported having been given enough time to ask questions and discuss concerns, but 29% did not. 98% of participants reported having been given information about PD at the time of diagnosis but 36% did not find the information given helpful. Patient satisfaction with the diagnostic consultation was positively associated with more sensitive delivery of diagnosis, the helpfulness and quantity of the information provided and time to ask questions (all p < 0.001). Where diagnosis was given by a specialist, participants reported greater perceived satisfaction with the diagnostic consultation, greater sensitivity of communicating the diagnosis, time to ask questions, provision and helpfulness of information, and earlier medication prescription (all p < 0.0001). Conclusions There is a need to improve how the diagnosis of PD is communicated to patients, the opportunity to ask questions soon after diagnosis, and the amount, timing and quality of life information provided, as this is associated with greater satisfaction with the diagnostic process.

Patients' Awareness of Symptoms, Understanding and Perception of Parkinson's Disease

Environment-behaviour proceedings journal, 2024

This study investigates the crucial role of Parkinson's disease (PD) patients' awareness, understanding and perception in achieving positive treatment outcomes. Using the Knowledge and Perception of Parkinson's Disease Questionnaire (KPPDQ), a survey was conducted among 169 PD patients in one of the teaching hospital's Neurology Clinic. Significant correlations were found between age, duration since diagnosis, ethnicity, employment status, information sources, and patients' understanding levels. The study highlights the necessity for targeted interventions and continuous research to enhance patient education, correct misconceptions, and foster a more informed and supportive society for PD patients and their families, contributing to overall well-being.

The Experience of Parkinson's Disease: Toward a Phenomenological Understanding

Despite being the second most common neurodegenerative disorder, Parkinson’s disease (PD) has received little attention in the phenomenological literature. This study aims to contribute to this limited body of research by exploring the questions of what it is like to be a Parkinson’s patient and what meanings can be ascribed to their experience. To answer these questions the study thematically analyzed seven accounts of PD through a hermeneutic, phenomenological lens using a combination of Wertz’s Phenomenological Psychological method (2011) and McCracken’s The Long Interview method (1988). The participants of this study consisted of 6 men and 1 woman, ranging in ages 58 to 71, who have been diagnosed with PD for between 3 and 10 years. Three of these accounts were gathered via in-person interviews and the other four accounts were obtained through published, autobiographical writings. The phenomenological analysis identified four themes that appear to be characteristic of the experience of PD: (1) Denial, (2) Emotion and symptom expression, (3) Alteration of temporal perspective, and (4) Volitional and spontaneous action. The themes are reflected upon by using concepts in existential philosophy to clarify their psychological significance and to synthesize them into an account of the subjective experience of PD. The findings of the study were compared to other findings in the phenomenological literature. Limitations of the current study were discussed and suggestions for further research were posed.

Time intervals in diagnosing Parkinson's disease: The patients' views

Patient education and counseling, 2015

To explore patients' views on their pathway to the diagnosis of Parkinson's disease (PD). A qualitative study of 52 essays written by patients with PD, using comparative content analysis. Patients divide their diagnostic pathway into three time intervals: recognition of the symptoms; the decision to seek help; and the process of diagnosing PD. Patients have difficulties recognizing the prodromal symptoms of PD (their knowledge is based on public figures with advanced PD) and mention their general practitioners do as well. The decision to seek help is influenced by the patient's attitude toward health care and by their significant others. More than half of the patients believe their diagnosis was delayed. However, the majority of all patients are satisfied with their diagnostic trajectory. The pathway to diagnosing PD is an iterative process influenced by patient-, health care provider- and disease-related factors. Despite possible delay in diagnosis, patients are content...

Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Psychology & Health, 2017

Objective: Dominant models of illness uncertainty define uncertainty as 'an inability to determine the meaning of illness-related events'. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson's disease (PD). Design: Eighteen carers of a spouse with PD participated in semi-structured interviews. Transcripts were thematically analysed, statements were coded as uncertain if they reflected 'a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome'. Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, selfmanagement, social functioning and impact. An additional 'carer-role' domain was identified. Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness. The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being.

Sailing the stormy seas: The illness experience of persons with parkinson's disease

The Qualitative Report, 2010

Parkinson’s disease is a chronic, progressive disorder with no known cause or promising cure. While substantial information is known about the pathophysiology, little is known about the illness experience of living with the disease. A qualitative study using an ethnographic approach was conducted to provide a rich understanding of the illness experience. The illness experience was apprehended through field work in two support groups and the personal accounts of 14 participants with Parkinson’s disease. The metaphor, “Sailing the Sea in The Eye of the Storm,” is the overarching theme and was chosen to conceptualize the voyage of persons living with Parkinson’s disease. Two prevailing sub-themes were Daily Negotiations in the Midst of Uncertainty and Reconstruction of the Self.

Sailing the Stormy Seas: The Illness Experience of Persons with Parkinson

Qualitative Report, 2010

Parkinson's disease is a chronic, progressive disorder with no known cause or promising cure. While substantial information is known about the pathophysiology, little is known about the illness experience of living with the disease. A qualitative study using an ethnographic ...

From Passive Patient to Engaged Partner: My Journey With Parkinson Disease (Preprint)

2018

UNSTRUCTURED This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.