Abstract
BACKGROUND
Neurological disorders such as Parkinson’s disease (PD) often impact negatively not only on diagnosed persons but also on family caregivers. The importance of taking caregiver perspectives into account has been increasingly recognized over the past decade [1–5]. Caring for a person with PD can negatively impact caregivers’ health and wellbeing in terms of physical, psychological, social and financial consequences [2, 4]. Factors such as PD severity and duration and activity limitations in daily life of the person with PD, as well as caregiver age and duration of caregiving have been identified as potential contributors to poorer caregiver quality of life and mental health [2].
While it is clear that being a family caregiver for a person with PD can impact caregiver health and wellbeing, it is less clear to what extent caregivers’ own needs for health and social services are met. This is highly relevant since it is reasonable to assume that adequate access to health and social services would be of importance to lessen negative consequences of caregiving. For example, Peters et al. examined PD caregiver experiences of problems with support from health and social care services and found that a majority did experience such problems and that the number of problems experienced was related to poorer health status and greater strain [6]. However, the problem areas considered tended to focus on the caregiving situation relative to the patient, rather than caregivers’ own health related needs. Similarly, a recent study on PD caregiver-identified health care needs and barriers focused on needs related to the caregiver role and patient related issues [7].
Here we explored the extent to which family caregivers of people with PD experience that they have sufficient access to health and social services for their own needs, as compared to age-matched controls; and the associations between their perceived health and social service access and self-reported demographic and health-related variables.
METHODS
The study was conducted in accordance with the Declaration of Helsinki and was reviewed by the local institutional ethics advisory committee. All participants provided informed consent.
Sweden has a tax-financed health care system that covers all citizens. There is a trend towards increased occurrence of outpatient care within health care organizations such as primary home care or specialist home care from multi-professional teams as well as care and support from home help service. In the case of PD, many clinics have PD specialized nurses, who in addition to people with PD also offer support to their family caregivers [8].
The study was conducted as a cross-sectional survey to family caregivers of people with PD and an age-matched control group. All 107 registered PD family caregiver members of a local south Swedish branch of the Swedish PD Society were mailed a questionnaire booklet to be completed anonymously; a reminder was sent 3 weeks later. Controls were recruited consecutively from a primary care clinic in a different south Swedish geographic area than that from which PD family caregivers were recruited; 100 control subjects were approached. Different geographical areas were used in order to avoid potential overlap between samples (i.e., PD family caregivers visiting the primary care clinic). However, both areas were similar in terms of their general demographic and socioeconomic profiles, health care availability, etc.
The survey included demographic questions, the 36-item Short Form Health Survey (SF-36, version 1), and the sleep section of the Nottingham Health Survey (NHP). The survey also included a questionnaire regarding how often respondents had had contacts with various health/social (and related) services with respect to their own needs during the past six months and whether they perceived these contacts as sufficient to meet their needs. This questionnaire was designed based on a questionnaire previously used in a UK survey among people with PD [9]. However, as it was constructed for the purpose of this study it has not been tested before, although we successfully pilot tested it regarding comprehensibility, feasibility and acceptability among 10 lay individuals. The services inquired about were in-home respite care, district-/primary care nurse, PD specialized nurse (PD family caregiver sample) or other nurse (control sample), home help service, physician, physiotherapist, occupational therapist, social worker, short-term care, rehabilitation, psychologist/psychiatrist, day care, in-hospital care, support groups, alternative medicine, and “other” (to be specified by the respondent). For each service, the respondent selected one of four pre-defined frequencies of contacts during the past 6 months (i.e., 0, 1–3, 4–8 or >8 contacts), and marked whether they considered this frequency as sufficient or not. The questionnaire is only available in Swedish and can be obtained from the corresponding author. Respondents reporting insufficient contacts with at least one type of service were categorized as experiencing some degree of insufficient access.
The SF-36 is a generic health status questionnaire covering eight aspects of health: Physical Functioning (PF), Role limitations/Physical (RP), Bodily Pain (BP), General Health (GH), Vitality (VT), Social Functioning (SF), Role limitations/Emotional (RE) and Mental Health (MH). Each of the eight SF-36 scales yields a total score of 0–100 (100 = better) [10]. Since sleep is not covered in the SF-36, the 5-item Sleep section of the NHP (NHP-Sleep) was used as an index of sleep problems. The NHP-Sleep yields a total score of 0–100 (100 = worse) [11]. In addition, PD family caregivers were asked to provide basic information on the person with PD that they provided care for. This included basic demographics, PD duration, caregiver-perceived overall PD severity (rated as mild, moderate and severe), and the 5-grade single-item Parkinson Activities of Daily Living Scale (PADLS) [12].
Data were checked regarding underlying assumptions and described and analysed accordingly using Stata MP version 13.1 for Mac OSX (StataCorp, College Station, TX, USA). P-values<0.05 were considered significant. Mann-Whitney and χ2/Fisher’s exact tests were conducted regarding associations between (a) group affiliation (PD carer or control) and demographic and health-related variables, and between (b) perceiving health/social service access as sufficient or insufficient and group affiliation, demographic and health-related variables. Finally, variables associated with insufficient health/social service access (P < 0.10) in bivariate analyses were included as independent variables in an exploratory backward stepwise logistic regression analysis (dependent variable: sufficient vs. insufficient service access, scored 0 and 1, respectively). To ease interpretation of odds ratios (ORs), all scores were adjusted to be in the same direction (higher scores = more problems) in the regression analysis.
RESULTS
Sixty-six PD family caregivers and 79 controls responded to the survey (61% and 79% response rates, respectively). Demographic characteristics are reported in Table 1, including caregiver-provided data on the people with PD that they were carers for. There were no differences in the proportion of people having a disease of their own, but more control subjects were single and they also tended to be higher educated. PD caregivers had cared for someone with PD for up to 18 (median, 3) years and spent an average of 22.5 hours of caring per week. Family caregivers reported lower levels of vitality and mental health as compared to controls, but similar levels on other assessed health dimensions.
Data on perceived sufficiency of health/social service access during the past six months were reported by 120 persons (58 caregivers and 62 controls), of which 91 reported sufficient access and 29 reported insufficient access (n = 24/58 [41%] PD caregivers vs. n = 5/62 [8%] controls; Table 2). Those reporting insufficient access were more often PD family caregivers than controls (83% vs. 37%; P < 0.001), did more often have a disease of their own (79% vs. 46%; P = 0.002), and had poorer health according to all SF-36 scales (P≤0.043) and the NHP-Sleep (P = 0.047; Table 2). The frequencies of reported insufficient access for the respective areas are given in Table 3, together with the distribution of perceived insufficient/sufficient access by caregiver reported severity of their relative’s PD. PD family caregivers reported insufficient access to between 0–11 different health/social services per person; corresponding numbers among controls were 0–4.
Multiple logistic regression analysis with sufficient vs. insufficient health/social service access as the dependent variable showed that being a PD family caregiver (OR [95% CI], 8.90 [2.84–27.92]; Wald, 3.75; P < 0.001), reporting more pain according to the BP scale of the SF-36 (OR [95% CI], 1.02 [1.00–1.04]; Wald, 2.29; P = 0.022), and having an own disease (OR [95% CI], 3.46 [1.08–11.05]; Wald, 2.09; P = 0.036) were the only variables showing significant independent associations (Likelihood ratio χ2(3), 36.20 (P < 0.001); McFadden’s Pseudo R2, 0.28; VIF ≤1.20).
DISCUSSION
This study shows that being a PD family caregiver is associated with poorer mental health and less vitality as compared to age-matched controls. Furthermore, perceived insufficient health and social service access is associated with poorer self-reported health and being a PD family caregiver. In fact, our exploratory analyses suggest that being a PD family caregiver is associated with an almost nine-fold increase in the odds of experiencing insufficient health and social service access; followed by experiencing pain and having an own disease. Several studies demonstrate that caregivers experience poorer health and higher mortality rates than non-caregivers [13]. This is further strengthened by our results that in addition show that caregivers also experience insufficient access to services that could be of importance for their health and wellbeing.
The logistic regression analysis suggested that being a PD family caregiver and having an own disease were independently associated with insufficient access. Except for pain there were no additional independent associations among other demographic or health-related variables. However, this should be interpreted with some caution given the relatively limited sample size and potentially complex interactions, e.g., between marital status and group affiliation (caregiver vs. control) that could not be accounted for due to our sample size.
Our observations are in line with earlier studies. For example, Peters et al. [6] found a relationship between the number of reported problems with health and social care service support and poorer health status and greater strain. The most frequently reported problems in that study were insufficient opportunities to discuss amount of caring with a health or social professional, insufficient involvement in care planning for the patient, not being valued enough by the health and social services, and insufficient help with physical care [6]. Another recent study found that more than half of PD caregivers report a need for services regarding wellness strategies on how to maintain their own health [7]. It has been suggested that family caregivers need education and support for their own sake, to cope with their own situation and there are indications that they may have limited knowledge of resources such as support groups, programs, and other benefits that could potentially promote their health and wellbeing [14]. There is a need for increased efforts to promote health and wellbeing of caregivers of people with PD, including improved service access as well as assuring that they receive information about available resources. This is underscored by the major effort of being a family caregiver for someone with PD as caregiver participants in this study had been providing PD care for up to 18 years and spent an average of 22.5 hours of caring per week, which does not appear to be exceptional [6, 7]. The crucial contribution of family caregivers should therefore not be underestimated and in order to avoid additional burden on health and social services as a result thereof, attention must be paid to the health and wellbeing of caregivers themselves. Recent developments in self-management programs may be a step towards providing better care for those who care [15].
There are limitations that should be considered when interpreting the findings of this study. The most obvious one is the small sample size, which imposes limitations in general and particularly regarding the regression analysis, including more detailed investigation of interaction effects. Furthermore, all data were self-reported and cross-sectional, which precludes any interpretations beyond associations. It should also be acknowledged that the questionnaire regarding perceived sufficiency of health/social service access is previously untested. We were also unable to consider actual health and social service access and may well have overlooked potentially important independent variables. Furthermore, the fact that the study was conducted under the Swedish health care system limits its generalizability beyond this and similar contexts. However, a major strength of this study is the inclusion of an age-matched control group, which allows for valid comparisons between PD family caregivers and other people at about the same age.
Our results imply that those who are in greatest need of health and social service access, i.e., those with poorer perceived health, a disease on their own and who care for an ill family member, are those whose needs are least met. However, larger studies are needed to allow for firmer conclusions regarding the extent to which health and social service needs are met among family caregivers, and how this impacts their health and wellbeing. Given the crucial and long-term contributions of family members in providing care and support for people with neurodegenerative disorders such as PD, it is of utmost importance for health and social service providers to not only focus on patients but also to consider their family members.
CONFLICT OF INTEREST
The authors have no conflict of interest to report.
Footnotes
ACKNOWLEDGMENTS
The authors wish to thank the participants for their collaboration, the Swedish Parkinson’s Disease Association for assistance with data collection, Dr. Per Nyberg for valuable discussions, and the Swedish House in Kavalla, Greece for inspiration. The study was supported by the Swedish Research Council, the Swedish Parkinson Foundation, the Swedish Parkinson Academy, the Capio Palliative Care Unit, Stockholm, Sweden, Center for Collaborative Palliative Care, Linnaeus University, Kalmar, Sweden, and Kristianstad University, Kristianstad, Sweden.