Affiliations: [a] Department of Health Sciences, Lund University, Lund, Sweden | [b] Department of Health Care Sciences and Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden | [c] Capio Palliative Care Unit, Stockholm, Sweden | [d] Center for Collaborative Palliative Care, Linnaeus University, Kalmar, Sweden | [e] Department of Medical and Health Sciences, Linköping University, Sweden | [f] The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden
Correspondence:
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Correspondence to: Peter Hagell, PhD, School of Health and Society, Kristianstad University, SE-291 88 Kristianstad, Sweden. Tel.: +46 44 204056; E-mail: Peter.Hagell@hkr.se.
Note: [1] Both authors are first authors.
Abstract: Background: Being a family caregiver for a person with Parkinson’s disease (PD) can negatively impact health and wellbeing, but it appears less clear to what extent caregivers’ health/social service needs are met. Objective: We explored the extent to which PD family caregivers experience sufficient access to health/social services, as compared to age-matched controls; and the associations between this and demographic and health-related variables. Methods: A cross-sectional survey of 66 PD family caregivers and 79 age-matched control subjects including the SF-36 health survey, the Nottingham Health Profile Sleep section (NHP-Sleep), and questions regarding contacts with various health/social related services and whether these were perceived as sufficient. Results: People reporting insufficient access (n = 29) were more often PD family caregivers than controls (83% vs. 37%), did more often have a disease of their own (79% vs. 46%), and reported poorer health according to the SF-36 and the NHP-Sleep. Being a PD family caregiver (OR, 8.90), reporting more pain (OR, 1.02) and having an own disease (OR, 3.46) were independently associated with insufficient health/social service access. Conclusions: Our results imply that those in greatest need for health/social services (i.e., those with poorer health, an own disease, and who are PD family caregivers) are those whose health/social service needs are least met. Larger studies are needed for firmer conclusions and regarding how unmet health/social service needs impacts caregiver health and wellbeing. Health/social service providers should not only focus on patients but also consider their family members’ needs.
Keywords: Caregivers, health, health services needs and demand, Parkinson disease
