RESUMEN
Although the psychosocial sequelae of living with dysphagia secondary to Parkinson disease (PD) are described in the literature as challenging, there has been little focus on using this information to influence the design of dysphagia treatment. A more nuanced understanding of the psychosocial experiences of this population may assist clinicians in providing a patient-centered approach to care. Our study was designed to gather insight into the common psychosocial experiences associated with dysphagia in the context of PD. A semi-structured interview consisting of open- and closed items was conducted with 25 individuals from regions across the country with self-reported oropharyngeal dysphagia secondary to PD. Questions were developed using comprehensive stress and coping frameworks that emphasized psychosocial predictors of specific affective reactions (e.g., grief, anxiety, depression), including self-evaluation (e.g., self-identity), coping strategies, social support, personal expectations (including perceived control over symptoms and prognosis), positive experiences, and perceptions of personal growth. Interview responses were subjected to a qualitative analysis and revealed three dominant themes: (1) Recalibration of a PD Diagnosis, (2) Vigilant Caution to Swallowing, and (3) Grieving the Loss of the Communal Meal. Using these data interpretations, we discuss three concepts for speech-language pathologists working with individuals with dysphagia and PD to consider during clinical interactions; these are reframing swallowing vigilance to engagement with mindful eating, using biofeedback to align patient perceptions and swallow physiology, and understanding the consequences of loss (of their former swallowing ability) through grief and growth reactions.
RESUMEN
Dysphagia is a leading cause of morbidity and mortality among individuals with Parkinson's disease (PD). The primary objectives of the present study were to explore patients' narrative reports focused on what information and evaluation and treatment experiences they identified as they manage dysphagia, and to identify practice patterns relevant to dysphagia management. A secondary objective was to produce an educational resource for this population that addressed their questions about dysphagia. A sample of individuals with oropharyngeal dysphagia secondary to PD (n = 25) across all regions of the United States were interviewed using open- and closed questions and a written questionnaire. Verbatim interview transcripts were interrogated using qualitative content analysis (QCA) with an inductive approach to identify themes from the participants' reported knowledge of dysphagia and experiences with swallowing evaluation and treatment. Authors developed a pamphlet addressing common questions that participants posed in the interviews and conducted a member check to revise it with their feedback. Most participants reported having been asked about their swallowing function by a healthcare professional. 60% of the sample reported having had a swallowing evaluation. Only 20% (5/25) of participants reported having completed swallowing therapy. Some participants did not know that swallowing therapy exists. Nearly all participants reported having a strong desire to know more about dysphagia and preferred a pamphlet as a resource format. Few of the study participants had received swallowing therapy, and nearly all participants were eager to learn about the nature of dysphagia, its progression, and treatment options. Given the physical, emotional, and social ramifications of living with dysphagia, access to swallowing education and treatment needs to be a stronger focus of PD management.
RESUMEN
In a sample of 59 chronically ill pediatric patients and their maternal caregivers, both child-reported pain and caregiver-reported depression predicted child-reported depression. Results further suggested that the association between pain and depression in children is ameliorated by caregiver coping strategies and that how caregivers cope is a function of their attachment-related representations of the self and others. Caregivers with a negative model of the self were more depressed. and those with a negative model of others were more prone to use avoidant coping strategies, and, in turn, to be more depressed. However, the extent to which caregivers with negative models of self used more avoidant and less approach coping appeared to depend on whether they perceived that others were likely to respond to their needs.
