Easing Burden and Stress: Intervention Needs of Family Members of Patients with Parkinson’s Disease

INTRODUCTION

Parkinson’s disease (PD) is highly associated with care dependency. Most patients reside with their families, about 20% need care [1], mainly provided by relatives. Caregivers’ (CG) and other family members’ burden is often not recognized by healthcare professionals [2] while the care situation can have tremendous effects on their quality of life (QoL) [3] and might influence the decision to a premature institutionalization of the patient [4]. Risk factors for burden are, e.g., patients’ dementia and neuropsychiatric symptoms, a poor CG’s health status and psychiatric morbidity, as well as lack of adaptive coping strategies and self-efficacy [3, 5]. CGs may have to give up jobs and be faced with relational and lifestyle changes. Although CGs are normally involved in patients’ health-related decision-making, they are often provided with limited information [6]. As the disease progresses, demands on CGs increase [3, 5].

Consequently, there is a need for interventions for PD relatives aimed at improving their disease specific knowledge and skills, their own health behavior as well as their strategies to cope with lifestyle changes caused by the disease. For example, Lageman et al. [7] assessed service needs of 66 PD CGs and found that although CGs reported good QoL and adaptation to the CG role, the majority required support regarding symptom management, strategies to promote well-being, and dealing with altered lifestyle, future planning, relationships, and patients’ cognition. Remarkably, the impact of PD on the well-being of other family members (non-caregivers, nCGs) is underinvestigated. Few studies with PD patients’ children who are mostly not involved in care [8, 9] have shown considerable effects of parental PD including depression and impairment of family functioning. Furthermore, they complained about a lack of information on PD which could reduce feelings of uncertainty and insecurity.

Even though treating CGs is recommended for chronic diseases [10], only few intervention studies for PD CGs exist; studies for nCGs are lacking. Interventions identified were mainly delivered to patients and CGs together rather than focusing on CGs’ psychosocial needs [5, 10]. Intervention elements with evidence for reducing burden in PD CGs included psychoeducation for CGs and patients, psychotherapeutic treatment of, e.g., CGs’ depression and anxiety, and the management of PD patients’ neuropsychiatric symptoms [5]. Interventions that offer fellowship with other CGs and mindfulness-based trainings might also reduce burden [5]. The only validated intervention available is the psychoeducational program PEPP (Patient Education Program Parkinson) [11] and its Dutch modification for chronic diseases [http://www.ppep4all.nl/]. PEPP aims at training patients and CGs in eight separate, parallel groups. Based on cognitive-behavioral techniques – clearly focusing patients’ needs – competences (seeking information, stress management, dealing with anxiety and depression) are trained. RCTs found a significant reduction of CG burden [11, 12], but no impact on QoL and depression [11], and burden increased to baseline levels within six months [12]. Furthermore, the lack of up-to-date and locally aligned information as well as new media could indicate the need for revising the program.

Little attention has been paid to content (which topics are of high interest?) and formal (e.g., timing, location, group size) aspects aligned to PD relatives’ needs and wishes for educational interventions. Consideration of these aspects could prevent dropouts.

Thus, this study aimed at examining both CGs^′ and non-CGs^′ need for a psychoeducational group intervention including their wishes regarding content and formal aspects.

MATERIALS AND METHODS

This is a cross-sectional study of PD relatives recruited from March to October 2017 at the departments of Medical Psychology and Neurology at the University Hospital of Cologne as well as in Cologne medical practices and support groups. The sample was not strategically compiled. The relatives were addressed by psychologists of our working group or by doctors’ receptionists, while the PD patients received medical treatment in the clinics/practices, or relatives of patients who had been study participants in former studies were contacted by telephone and asked whether they were interested to participate. The questionnaires were sent by post or were personally delivered. All individuals had received stamped and addressed envelopes to maximize the response rates. The survey was conducted completely anonymously as no personal data (e.g., names or addresses) were asked for. The study was approved by the ethics committee of the University Hospital Cologne, Germany. Research was conducted in accordance with the 1975 Declaration of Helsinki. Since the survey was completely anonymous, a written informed consent to participate was not required.

A 36–item questionnaire was developed based on literature results [7] and PEPP topics [11] that asks PD relatives about sociodemographic data, PD patients’ sociodemographic and clinical data, care activities (if applicable), and wishes upon a group intervention (participation, contents, formal aspects; see Supplementary Material). Additionally, two five-point Likert scales were added to evaluate burden of disease and burden of care (if applicable).

SPSS 25 statistics software (IBM) was used for data analyses (alpha level .05; all tests 2–tailed). The Shapiro-Wilk test was applied to assess normality of continuous variables. Data are indicated as means and standard deviations for continuous variables, and frequencies and proportions and median and range, respectively, for categorical variables. The Mann-Whitney-U test for nonparametric continuous variables and Pearson’s χ² test for categorical variables were used to compare CGs and nCGs. Associations between burden of care/burden of disease and sociodemographic factors as well as patient and care characteristics were explored computing Spearman’s rank correlation coefficient r_s, the Mann-Whitney U test and Kruskal-Wallis test, respectively. The effect size r is reported indicating small (r≥0.1 to r < 0.3), medium (r≥0.3 to r < 0.5), and large (r≥0.5) effects [13].

RESULTS

133 questionnaires from PD relatives were delivered. Of these, 67 were CGs and 66 were nCGs (Table 1); most relatives were female (CGs: 75%, nCGs: 64%). While CGs and nCGs were comparable regarding gender and education, CGs were significantly older than nCGs. 97% of CGs vs. 59% of nCGs were spouses; 26% of nCGs were patients’ children. 68% of CGs vs. 30% of nCGs were retired, and 39% of nCGs were fully employed.

PD patients in both groups were predominantly males (CGs: 72%, nCGs: 67%), and older in the CG group. Disease duration was significantly longer in the CG group. 12 patients in the CG group but no patient in the nCG group suffered from dementia. CGs cared on average since 6.9 years and for 6.8 hours daily for the patient. The median value of the German’s care degree was 3.0 which corresponds to serious impairment of patients’ independence.

Both groups were stressed by patients’ disease, but CGs reported significantly more burden. Significant associations (Supplementary Table 1) were found between burden of care and longer duration of illness (p = .033), higher care degree (p = .000), patients’ dementia diagnoses (p = .012), longer duration of care (p = .018), more daily care hours (p = .000), and more frequent self-reported burden of disease (p = .000) for the CGs. Burden of disease was significantly correlated with a lower highest school-leaving qualification (p = .033), higher care degree (p = .000), patients’ dementia diagnoses (p = .019), more daily care hours (p = .000), as well as getting care support (p = .038), and more frequent self-reported burden of care (p = .000). In nCGs burden of disease was not significantly correlated with any variable.

Table 2 presents the results of the questionnaire. 84% of CGs and 90% of nCGs were convinced about the subjective benefit of a psychoeducational intervention.

Regarding contents, about half of CGs and nCGs indicated that information on care and services for patients and relatives as well as coping with emotional distress would have high relevance. Differences existed regarding information on PD and treatment as well as sharing experiences with other relatives, which were significantly more relevant for nCGs, while stress management and receiving social support were more demanded by CGs. In the open question, further aspects including information on healthcare options (e.g., care facilities, living will, power of attorney), use of modern technologies (e.g., interactive web portal), and improvement of communication with healthcare professionals were noted.

Regarding formal aspects, both groups preferred sessions in the afternoon or evening with a maximum of two hours duration, with about ten participants, and one or two sessions per week. 41% of nCGs preferred weekday sessions whereas 50% of CGs were neutral. nCGs could imagine to spend significantly more time on participation than CGs (9.9 vs. 3.6 weeks).

DISCUSSION

The aim of this study was the identification of CGs’ and nCGs’ needs regarding content and formal aspects of a psychoeducational intervention as a basis to develop needs-based programs. One main finding of our study is that the vast majority of CGs and nCGs is convinced that they would benefit from a group intervention. Given that studies of patients’ relatives with neurodegenerative diseases such as dementia show the efficacy of psychoeducational programs on the one hand [10], but that this field is underinvestigated and clinical implementation of support programs is far from being realized in the context of PD, this topic urgently needs further attention.

Our results confirm previous findings that PD CGs are considerably burdened by the disease and its consequences [2, 5]. The association between burden of disease and burden of care was strong. Our data also confirms that characteristics of the care situation (e.g., care degree, daily care time) and dementia are moderate to strong correlators of burden [3, 5]. While studies have shown that PD patients’ children are also burdened by the disease [8, 9], our study shows that this is the case more generally for PD nCGs, indicating that not caregiving alone causes burden and that nCGs are in need of support as well. Also, none of the nCGs reported that their PD relatives were affected by dementia. In the light of this aspect, it could be assumed that the strain of the nCGs might be even more distinctive in nCGs with demented PD relatives.

We found that there is a strong information need in CGs and nCGs. This is alarming as the survey was conducted in Cologne, Germany, which is an urban region in which a good supporting infrastructure regarding health-care should be expected, and is in fact available (e.g., PD specialists, patient information center at the University Hospital, care consulting, supporting groups etc.). However, even there the spectrum of facilities is obviously not known, or the information is not adequately transported. Therefore, transfer of knowledge with low-threshold availability – preferably referring to local health care services and regulative issues (e.g., power of attorney) – should be an essential element of interventions. Information deficits on care could further be addressed by care training which would have the additional advantage of promoting care skills and care related self-confidence. Notably, our data show that nCGs more than CGs require additional information on PD and its treatment. In accordance with previous findings on information deficits in PD patients’ children [8, 9], this might help to reduce their feelings of uncertainty as well as to prepare them regarding the disease progression. This might further indicate that program adaptations depending on the target group (CGs vs. nCGs) could be reasonable. This aspect is supported by the finding that more nCGs than CGs wanted to share experiences with other relatives, so that room for interpersonal exchange might be especially important. Promoting informal meetings after the intervention sessions and/or giving information on local support groups, would further address this request. Since CGs voted for receiving social support more frequently, this aspect might have a stronger emphasis for this target group. Finally, for both groups, dealing with emotional distress had high relevance, and stress management was also one main topic for the CGs. Notably, coping is a basic skill that is mandatory to deal with distress and prevent long-term health consequences. Therefore, improvement of self-management skills including coping strategies should be essential elements of family centered interventions, which has been shown to be effective in CGs of patients with other progressive diseases such as dementia [10]. In sum, it seems that needs-based multi-component interventions (which have been shown to be effective in dementia CGs [14]) should combine psychoeducation (with up-to-date and locally aligned information as well as information on possibilities for technique-based support), cognitive-behavioral therapeutic elements possibly combined with other psychotherapeutic approaches (e.g., mindfulness), and care training. Although some components have been included in previous programs, e.g., improving social support and coping as key components of PEPP [11], this multilevel approach might be especially valuable to improve interventions’ efficacy.

Regarding the setting, this study demonstrated that an intervention with two-hour sessions in the late afternoon, a maximum of ten participants, and one or two sessions per week seems most feasible. These results are in line with the PEPP structure [11] and other existing group interventions for (non PD) CGs which consist of 2 to 8 weekly sessions of 90 to 120 minutes [15]. Notably, as our CGs rated 4 sessions to be optimal (nCGs: 10 sessions), the time strain of CGs has to be considered in adaptations for this target group. To face this problem, various solutions are possible: First, parallel groups for the patients, e.g., with meaningful and recreational activities, could be implemented. Also, modular interventions, that are repeatedly offered, would give the possibilities to attend missed sessions or only chose relevant modules of the program. Furthermore, technology-based psychosocial interventions for relatives which can be recalled in a more flexible way (e.g., in form of Apps, homepages or telemedicine approaches) could be expedient. These latter two ideas could also be interesting for nCGs and families in rural areas and people with times strains due to their working lives.

The study has some limitations that have to be considered when interpreting the results: First, it is unclear how representative the sample is, as (1) due to the anonymous survey a possible selection bias of relatives cannot be ruled out, and (2) no information on the severity of the disease (e.g., Hoehn & Yahr stage) is available. Also, (3) the gender ratio of the PD patients the relatives reported upon was above 1:2 (female vs. male) although the prevalence ratio is estimated to be 1:1.5 [16]. However, the facts that the sample was compiled of almost the same number of CGs and nCGs and that both disease duration and age showed a wide range, indicate that the PD patients the CGs and nCGs reported upon were very heterogeneous. This notion is substantiated by the fact that the care degree ranged from 1 (“slight disturbances in independency”) to 5 (“most serious disturbances in independency with special care demands”). However, the nCGs did not report on PD patients also suffering from dementia. Future studies could aim at conducting a survey with a representative sample with a strategic sample compilation. Furthermore, one group that is clearly insufficiently covered by the current study but needs more attention are relatives of younger patients who are, e.g., still in their working life and relatives in different relationships to the patient (including children). Furthermore, a standardized assessment of CG burden was not used and should be included in future studies. Notably, longitudinal data which are not assessed in the current study could elucidate changing problems and burden in the course of the disease which might also change the needs within a psychoeducational program. Finally, our study only focused on group interventions which are a common and successful approach in CGs and patients with neurodegenerative diseases such as dementia [14]. However, also individual (online, self-management) interventions might be a good strategy [17] and should receive more attention also in the context of PD.

The main strength of this study is that – to the knowledge of the authors – for the first time, PD CGs and nCGs were asked about content- and setting-related aspects of a psychoeducational intervention and were therefore involved in giving the basis for the further development of such interventions. Our results contribute to an increased understanding of the specific needs of PD relatives and might inform scientists and clinicians regarding the development of tailored and low-threshold support programs to ease their burden and expand the ambulatory care of PD families.

CONFLICT OF INTEREST

EK has received grants from the German Ministry of Education and Research, the GermanParkinsonFonds, the German Parkinson Society; honoraria from: Oticon GmbH, Hamburg, Germany; Lilly Pharma GmbH, Bad Homburg, Germany; Bernafon AG, Bern, Switzerland; Desitin GmbH, Hamburg, Germany. AKF has received a grant from the German Parkinson Society, and honoraria from ProLog Wissen GmbH, Cologne, Germany. DS has no conflict of interest to report.