Social work scope of practice with Parkinson's disease: A qualitative study

Summary The field of social work has seen increased recognition across many sectors in recent years. Evolving racial, political, and medical paradigms and the COVID-19 pandemic have shown the importance of a person-centered approach to health and mental health. One such area of practice is neurology, specifically work with people with Parkinson's disease (PD), which is the second most common neurodegenerative disease, currently impacting more than 10 million people worldwide. While social workers have long played key roles in multidisciplinary teams in PD care settings, research and literature offering assessment and evidence in this area remain limited. This research study used a mixed-methods approach with additional in-depth qualitative interviews conducted with 11 social workers. This article presents findings from the 11 interviewees who are presently working with people with PD using thematic analysis. Findings Themes emerging were an in-depth detailed role of the social worker, the importance of strong relationships working with people with PD and their families, multidisciplinary teams, and the community. Institutional challenges were highlighted concerning supporting social work positions and encouraging social work intervention from the beginning of diagnosis to the end stages of the disease. COVID-19 proved very challenging for social workers, multidisciplinary teams, and families, and yet positive practices were identified as well. Applications The impact of this study reinforces the essential role specialized PD social workers play in multidisciplinary PD teams and recognition needed to increase their role through early intervention reflected in increasing social work positions in neurology

More than medications: a patient-centered assessment of Parkinson’s disease care needs during hospitalization

BackgroundParkinson’s disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population.ObjectivesThis qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting.MethodsFocus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis.ResultsA total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD.ConclusionPD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes

More than medications: a patient-centered assessment of Parkinson’s disease care needs during hospitalization

Background Parkinson’s disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population. Objectives This qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting. Methods Focus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis. Results A total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD. Conclusion PD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes

Table_1_More than medications: a patient-centered assessment of Parkinson’s disease care needs during hospitalization.pdf

BackgroundParkinson’s disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population.ObjectivesThis qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting.MethodsFocus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis.ResultsA total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD.ConclusionPD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes.</p