Caring Interactions in Secondary Prevention Programs: A Qualitative Inquiry of Individuals With Parkinson's Disease

With Parkinson's disease (PD) prevalence rates steadily increasing and long-term adherence to regular physical activity and exercise often difficult to achieve, it is imperative to investigate factors promoting adherence to secondary prevention programs (SPP) that help limit the progression of motor and nonmotor signs and symptoms of the disease. Caring interactions between patients and their rehabilitation team may be particularly germane to individuals with PD, given the physical and psychosocial issues that often accompany this disease (eg, loss of physical function, depression, apathy, and cognitive impairments). Considering this reasoning, the purpose of the present study was twofold: (1) to gain a better understanding of the nature of caring in an SPP setting from a patient perspective and (2) to discover what implications, if any, caring has on relevant patient-centered behaviors such as effort and adherence to SPPs.

Ten individuals with PD were recruited. In-depth, qualitative interviews were performed using a semistructured interview guide. Inductive content analysis was used to identify themes representing participants' experiences of caring in the SPP setting.

Six themes emerged from the data analysis. The first 4 themes described how rehabilitation providers fostered caring in the SPP setting: showing interest, creating a supportive atmosphere, benevolence, and paying attention. Participants described instances when rehabilitation providers (physical therapy assistants, physical therapy students, and exercise specialists) showed interest by asking personal questions and remembering personal information. A supportive environment was facilitated by making participants feel supported, welcomed, and valued. Benevolence was apparent when rehabilitation providers demonstrated kindness and approached their work as "more than just a job." Finally, the importance of feeling that rehabilitation providers "paid attention" to patients by giving them undivided consideration and by aiding with exercises was emphasized. This latter finding is akin to Nodding's concept of "engrossment," a key component of caring, which may be an important issue in the face of increasing use of technological devices (eg, laptop computers and i-pads) that may unintentionally direct rehabilitation providers' attention away from their patients. The final 2 themes-rehabilitation attendance and rehabilitation effort-pertaining to aim 2 of the study, are novel in underscoring the importance of caring with respect to patient behaviors.

Several practical implications can be gleaned from the current study including (but not limited to) remembering personal information about the patient, providing patients with undivided attention, providing support for patients, and making patients feel welcome. These findings underscore the importance of addressing affective skills in training future rehabilitation practitioners. Findings also reveal salient implications associated with caring, namely enhanced rehabilitation attendance and effort. Finally, results highlight the need to examine the generalizability of caring elements identified in the current study and to quantitatively assess caring antecedents and outcomes in SPP settings.