The lived experience of sleep disturbance in people with Parkinson’s disease

suddick km & chambers s (2010)  Journal of Nursing and Healthcare of Chronic Illness 2 , 292–301
 The lived experience of sleep disturbance in people with Parkinson’s disease Aims and objectives.  This paper reports on an exploratory study of the lived experience of sleep disturbance in a group of men with Parkinson’s disease (PD). Background.  Research into sleep disturbance in PD has focused on determining prevalence, causative factors, and relationships between the signs and symptoms. Sleep disturbance has not been previously explored from the perspective of the person experiencing it. Design.  An interpretive phenomenological approach, aligned with Heideggerian hermeneutics was used. Method.  A convenience sample of five people from the UK with PD participated in interviews in 2007–2008. Interviews were transcribed and data thematically analysed. Results.  The themes that emerged regarding sleep disturbance in PD were: ‘good and bad’ sleep, a worsening journey, the experience of uncertainty, and the experience of loss. Conclusions.  Sleep disturbance and ‘good and bad’ sleep, had significant implications for the person with PD and their carer. People with PD may accept or fight their sleep disruption, use, restrict, or avoid activity, and give up hobbies and sharing the marital bed. Sleep disturbance meant being part of a worsening journey, and experiencing loss and uncertainty. These may be inseparable essences of living with a progressive neurological condition. Relevance to clinical practice.  Sleep disturbance needs more recognition and improved management. Health professionals may need to better consider issues around uncertainty and loss, and coping with the worsening journey. Services that develop coping styles, self efficacy, and self management, and introduce structured ways of providing education, advice, and ongoing support are needed. This supports the nurse specialist role in PD.