Parkinson rehabilitation in nursing homes: a qualitative exploration of the experiences of patients and caregivers

Abstract

Purpose Worldwide, an increasing number of people are diagnosed with atypical Parkinsonism or idiopathic Parkinson’s disease (PD). Periods of acute functional decline, triggered by acute disease, are common. Rehabilitation is often necessary to restore functioning. Skilled nursing facilities (SNFs) in the Netherlands have developed evidence-based geriatric rehabilitation for Parkinson (GR-P) programs. However, data on the experiences and needs of patients and their caregivers are lacking. This study aims to address these, in order to propose recommendations for improvement. Methods We performed a qualitative study, using semi-structured interviews in two Dutch SNFs offering GR-P. Nine patients with PD and six informal caregivers were included. We subjected verbatim transcripts of 15 interviews to qualitative analysis. Results Data saturation was reached after 15 interviews. Three overarching themes emerged: (1) autonomy, (2) sharing information and (3) contact with others. Loss of autonomy was linked to the underlying disease and the rehabilitation environment itself. Patients and caregivers felt overwhelmed by events before and during rehabilitation, expressing a need to receive information and discuss prior experiences. They considered communication between hospitals and SNFs to be poor. Patients did not always appreciate contact with peers. Both patients and caregivers appreciated empathic healthcare personnel with a firm knowledge on PD. Conclusions Autonomy, sharing information and contact with others are central themes for patients and caregivers during GR-P in SNFs. We recommend actively exploring these three central themes with every patient and caregiver entering a GR-P program and offering staff continuing education on PD, in order to improve care.

Experiences of People Living with Parkinson’s Disease in Care Homes: A Qualitative Systematic Review

“…And then they ask me: 'Excuse me madam, what are you saying?' That is rather tiring, in the mornings' [31]. This was a consistent finding within the literature, with other participants expressing frustration at broader systemic failures, such as the care homes policies [33].…”

“…The studies included in this review were predominantly based on a qualitative methodology (n = 4) [31][32][33][34] with one mixed-methods study [30]. All studies (n = 5) used semistructured qualitative interviews with people living with PD in care homes, with one study [31] also including informal caregivers, another including close relatives [33] and a third also using focus groups to collect data from informal caregivers, nursing staff and other allied healthcare professionals involved in the care of people living with PD in care homes.…”

“…Disease duration ranged across the studies from 1 to 26 years, while age ranged from 59 to 93 years. All studies (n = 5) were based within Europe: the United Kingdom (n = 2) [32,33], The Netherlands (n = 2) [31,34] and Austria (n = 1) [30]. No studies from low or lower-middle income countries were identified for inclusion.…”

“…Another relative recalled a time when staff were consistently administering 'normal Sinemet tablets at 7pm and then a controlled release Sinemet an hour later-double the dose-but it was a fight with the staff as they said they must follow the hospital prescription' [33]. Others found it contradictory that medication had to be administered, and subsequent supervision provided by staff while patients take their tablets due to 'safety regulations', while they recalled medication being frequently distributed too late or not at all [31].…”

“…Although most participants valued the staff's expertise, there were some reports of concern regarding staff competency [31,33]. For example, patients who received duodenal levodopa infusion stated that nursing staff were not always capable of handling the pump [31]. One patient commented: 'Sometimes they ask me what to do [with the pump].…”