Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Abstract

This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link AbstractObjective: Dominant models of illness uncertainty define uncertainty as 'an inability to determine the meaning of illness-related events'. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson's disease (PD).Design: Eighteen carers of a spouse with PD participated in semi-structured interviews.Transcripts were thematically analysed, statements were coded as uncertain if they reflected 'a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome'.Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, selfmanagement, social functioning and impact. An additional 'carer-role' domain was identified.Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness.The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being.

Factors Associated With Uncertainty in Illness Among People With Parkinson’s Disease

“…Uncertainty in caregivers' of individuals with PD has also been reported. Particular uncertainties included illness status, progression, effectiveness, and side effects of treatment, rapport, management of symptoms, and planning for the future, as well as uncertainty over their appropriate role and coping strategies (Hurt, Cleanthous, & Newman, 2017). Moreover, a diagnosis of PD compromises the caregiver's quality of life because of the incurable and unpredictable characteristics of PD.…”

Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study

“…We therefore recommend including homework, individual home sessions and booster sessions in future research to identify significant differences in long‐term measurements in patients with PD and their informal caregivers. In clinical practice, it is necessary that health care professionals reinforce the knowledge of patients with PD and their caregivers about the illness over the time, because this knowledge can promote better self‐management (Stenberg et al, 2016) and reduce uncertainty (Årestedt et al, 2015; Hurt et al, 2017).…”

The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis

“…23 According to Mishel, 24 uncertainty arises from the complexity and lack of understanding of the disease and the unpredictability or ambiguity of events, all of which are aspects mentioned by the caregivers we interviewed. More recently, Hurt et al 25 linked carer uncertainty to a number of different aspects, including a lack of information about symptoms and prognosis and how to manage the patient’s medical needs, alongside difficulties in self-management and changes in the caregiver’s social role. In this context, health professionals, who are key figures and a source of information for caregivers, can play an important role in reducing uncertainty.…”