A purposive sample of 40 adults were recruited and enrolled using a maximum variation sampling strategy to ensure cases have heterogeneity on specific attributes that effect the variables of interest in the study (i.e., caregiver role).²⁰ In this study, the attributes for sampling were job status (employed, not employed), gender, race/ethnicity and familial relationship (e.g. spouses, children, other). Inclusion criteria were: 1) the participant self-identified as a primary, unpaid caregiver of an adult diagnosed with PD; 2) aged 18-75 years old; 3) current paid employee working full- or part-time or have been employed within the last five years; 4) reside and work in the United States.

A flyer with summary of information on the study was shared among various PD support groups. Those who responded to the flyer and self-identified as potential participants signed informed consent using DocuSign and received a link for a sociodemographic survey that included screening questions via REDCap²¹, an online digital platform where answers were electronically stored and automatically sent to the principal investigator. The sociodemographic survey was based on the template from the National Institutes of Health Biomedical Research Informatics Computing System (BRICS).²² Once deemed eligible, the participants were sent a link to access the quantitative surveys. Upon completion they received a link to a schedule of time and date options to schedule the online Zoom interview, a secure audio-conferencing platform.

Sociodemographic characteristics of the sample (N = 40) are shown in Table 1. The sample was predominately female (78%) and non-Hispanic white (88%). Most participants (70%) were working at the time of the study, while 30% (n=12) had retired from their main job occupation within the last three years of the time of the interview. The study sample consisted of an older working group (mean=57.53, SD=14.21).

Occupations were categorized by the US Bureau of Labor Statistics Standard Occupational Classification System (Table 1). In this sample the most common occupations were educational instruction (n=6), management positions (n=5) and sales (n=5). Overall, the WLB in this sample was adequate (the group mean was 13.48, SD 4.44; 55% scored 13 or below; the median was 13; range 7-22). There were no statistically significant differences of WLB by occupational category.

In this sample, the mean decision latitude score on the JCQ was high (69.8) as seen in Table 2; however, there was no correlation between decision latitude and WLB (r= −0.075, p=0.654) (Table 3). There was a significant association between work-life imbalance with high psychological demands (r= 0.3976, p= 0.007). Supervisor support (r= −0.322, p=.052) was considered medium in magnitude, but coworker support (r= −0.534, p=.001) was significantly associated with WLB (Table 3).

Participants in this sample reported moderate to high perceived stress levels (mean=19.7, SD= 5.62) as measured by the PSS-10 (Cohen & Williamson, 1998); and below the normative range of personal wellbeing (PWI_A mean=50.7, SD=10.3). Quality of life, measured by the Quality of Life Enjoyment and Satisfaction Questionnaire PROMIS 10 (Hays et al., 2009) scores in this sample fell below the general population (mean=48.4, SD=8.1). Each of these factors was significantly correlated to WLB (see Table 4).

This sample reported significant caregiver burden (mean=40.2, SD=13.6), with 92.5% scoring above 17 which indicates high caregiver burden. Females reported greater caregiver burden as measured on the ZBI (mean=42.2, SD=13.0) compared to males (mean=32.5, SD=14.6) but two sample t-tests showed this was not statistically significant (p = 0.431).This was likely due to the small sample size of male caregivers. Although caregiver burden was not associated with WLB it was strongly correlated with stress, wellbeing and quality of life scores (see Table 4).

The qualitative results revealed that work-life balance was influenced by a combination of barriers and facilitators. The following barriers emerged: physical stress, emotional stress, financial stress, and role conflict. Facilitators included work-related characteristics, such as being able to disclose the diagnosis to one’s supervisor, and tangible resources and emotional support that the caregiver was able to leverage to offset caregiving demands and facilitate WLB. A summary of qualitative thematic results with exemplar quotes are provided in Table 5.

Physical stress, whereby the job was physically demanding, or the aspect of caregiving was physically demanding, was reported as a frequent barrier to work-life balance. Physical stress included the mechanics of caregiving (e.g., having to lift someone, loss of sleep due to caregiving demands at night). Participants described feeling physically exhausted having to help their family members who are declining from motor impairment. Activities of daily living such as getting dressed required physical tasks of helping them stand up, change positions, or help them get their clothing on. For those caregivers who were older and with physical ailments themselves, this added to additional physical stress. Losing sleep at night resulted in physical exhaustion and added to the caregivers’ stress.

Emotional stress was described in multiple ways. One participant, a husband whose wife had PD for 14 years, described feeling exhausted and attributed these feelings toward a constant fear that she was going to fall. Others described emotional stress that was linked to feeling irritable or frustrated (I'm irritable far more, particularly around issues around things that I feel like he can do, but he won't try to do them). Caregivers described feeling frustrated and stressed about the person they were taking care of and linked this stress with their care recipient not wanting to engage in recommended therapeutic activity or treatment. This frustration seemed rooted in the amount of time and effort required by the caregiver and the reluctance on the care recipients’ side to “follow along”. For example, getting up alone without assistance for those at high risk of falls, refusing to take walks or exercise, to take medications on time, or adapt to a healthier diet all came up as sources of emotional stress for the caregiver. These issues often caused fear, anger, and led to arguments. One caregiver described feelings of resentment “he used to dust and clean and be involved in the house…the whole purpose of treatment and therapy is so that he can do more again…he used to be so active… I don’t mind doing more, but I’ve become resentful about seeing him decline without trying”.

Caregivers also described emotional stress as they struggled with communicating with the person with PD (Her voice is soft. I struggle and it’s frustrating, too, because it’s very hard to have a conversation). Additionally, several participants described cognitive changes that contributed to emotional stress. For example, one husband described his wife needing help with understanding simple tasks that she previously was able to do independently. Anything new or out of routine could contribute to anxiety for the care recipient, thus contributing to additional emotional stress of the caregiver. There were many reports of participants feeling unsure how to handle complex hallucinations and delusions which also added to emotional stress. One wife described a particularly stressful event in which her husband wandered off: “When he came back with the police, what do I do? I think maybe someone should write scenarios about what to do when your husband has X or your person with Parkinson’s does Y”.

Financial stress was another frequently reported barrier to work-life balance. Some participants described being unable to afford formal caregivers. In this sample of 40, many described being unable able to afford formal caregivers and discussed the decision to cut their own work hours or leave the workforce (e.g., retire) to provide the needed care themselves.

Role conflict was described as a barrier to WLB when participants were unable to delegate tasks to family members due to financial constraints, geographical barriers, or family dynamics. Even when family members were local, the caregiver might not want to “burden them” by engaging them in ongoing care needs. Caregivers who had children expressed that they wanted those children to focus on their own work and family needs rather than burdening them with caregiving tasks.

In this sample facilitators to work-life balance included job related characteristics such as job proximity and job flexibility. For some, disclosing the diagnosis at work was as a facilitator because it provided a sense that the supervisor was aware of the caregiver’s home situation. On the contrary, not being able to share this diagnosis frequently added to tension and stress. Other pragmatic aspects of work included job proximity which saved the caregivers time from commuting. Several in this sample opted to work minutes away and be able to leave work quickly when needed by the care recipient. Job flexibility, especially if it meant being able to take time off as needed for doctor appointments, was also frequently described as a facilitator.

Another facilitator to work-life balance in this sample was the caregivers’ ability to leverage tangible and emotional resources. Tangible resources were described as home services such as professional caregiving or home food delivery services. Emotional resources included having family members present which provided the caregiver with a sense of feeling supported. Participants with family nearby that offered to spend time with the adults with Parkinson’s alleviated some of the caregiver burden. When a family member offered to spend time, this allowed the caregiver to focus on other tasks and activities, and sometimes simply gave the necessary respite for the caregiver to work on personal or work related-tasks or to rest and relax.

The integrated data aim described the influence of barriers and facilitators on work-life balance in the context of time, stress and behavior and the associations with caregiver burden and quality of life. When qualitative and quantitative data were integrated, there was adequate (85%) concordance of the qualitative accounts of work-life balance with the scores on the WLB survey. Similarly, the qualitative narratives of job-related characteristics were concordant with the JCQ scores. The results of the integrated analysis identified that WLB is influenced by individual and multi-contextual factors. Time required for caregiver support, the stress associated with caregiving and the behavior required to fulfill the role of both caregiving and work were associated with caregiver burden and WLB.

There were three main findings identified from the integrated data analysis. First, among those who were still working, WLB was facilitated by meaningful job characteristics and caregiver burden was offset by caregiver resources and unique job-related characteristics (e.g. being able to take a few hours away from the work-day, or schedule work time in the late evenings after returning from medical appointments). Second, those who were still working but struggled with WLB were compromised by caregiver burden when the time, stress and behaviors of the caregiver role influenced the ability to be fully present at work. Third, balancing life, for some, required giving up one’s work.

Those with an adequate WLB score (13 and below) described facilitators that helped them (e.g., job proximity, job flexibility) to save time in other aspects of life. Participants also describing the benefit of job proximity that allowed for saving time commuting. Several described having job locations minutes away from home, allowing them to return home quickly when their family member needed them. For most participants, caregiver burden may have been offset by several job characteristics and resources that supported WLB. Generally, this sample reported high decision latitude at work (JCQ subscale sample score <69) but not everyone who had high decision latitude in this sample group reported adequate WLB (score < 14). In these cases, WLB may have been influenced by caregiver burden within the context of time spent providing care as well as other household responsibilities. For example, several participants described sharing housework for years before the Parkinson’s symptoms became severe. These qualitative results provide insight into the quantitative correlation between caregiver burden and quality of life. As symptoms worsened, participants described the need to take on more domestic tasks, thus shifting their sense of balance for time available for their professional work (my husband used to cook, vacuum, do all the maintenance around the house…now I'm in charge of everything plus I do the laundry and help him get fully dressed…I have to find time for my work).

Stress level scores correlated to WLB (higher stress positively correlated with poorer WLB scores (r= 0.315, p= 0.054) and the qualitative data illuminated that the sources of stress included physical and emotional demands of caregiving as well as financial stressors. Even when decision latitude for work was high, stress in both domains, home and work, was identified qualitatively as well as quantitatively. For example, a teacher who had been at the same school for 25 years and had a high decision latitude (score=66), described a hectic work schedule that led to feeling “stressed out”, which was concordant with her PSS10 score of 20, and JCQ subscale, psychological demands, score of 19, both of which were higher than sample mean. Emotional and physical stressors at home involved her caregiving tasks; while at work she worried about her husband and was concerned that he may fall or have difficulty managing on his own. Collectively, her WLB score (18) reflected work-life imbalance which was explained by the qualitative data.

Another female participant described high level of stress both at home and at work. She felt she could not disclose her husband’s diagnosis to her coworkers due to the high stress and competition in her real estate job (“<coworkers> may not see me as a partner …lose opportunities…”.) Another compared her role of taking care of her husband to coworkers who had children but felt she could not full share her situation for fear of not being understood (I think I downplayed it a bit…my coworkers are mostly women and they have children. I think that they have understanding of it, but, in some ways, I think that their responsibility is much more concrete”).

Results of the quantitative data showed a significant association of personal wellbeing and perceived stress scores across cases; when wellbeing scores declined, stress scores were significantly higher (r= −0.520, p= 0.001). Furthermore, caregivers described that they had to make personal adjustments in hobbies or personal activities due to high demands of caregiving. They described “giving up” these activities as contributing to increased stress and decline in quality of life.

Participants described that high caregiver burden at home affected their ability to work. They described being limited in their ability to meet the expectations of their job performances due to various aspects of caregiver burden (e.g. fatigue, lack of energy, difficulty concentrating). This contributed to a poor WLB. For some with high decision latitude (JCQ decision latitude scale score ≥ 64) having job control, including familiarity with the work that needed to be done, were able to offset caregiver burden. Several reported modified or accommodated job behavior expectations of their supervisor (My immediate boss, who is a national sales manager… I’ve known 20 years. He started a year before me, and we’re quite friendly, so I have a lot of latitude with the firm. They’re not expecting me to hit any quotas or anything. I’m very blessed in that sense).

Some participants with higher WLB scores which reflects poor work-life balance (>14), described challenges adapting to the behavior expectations of being a family caregiver (I am not a caretaker mentality… I’m a businessman; my mind thinks one way). Another husband described a similar challenge with role conflict (…being a loving and supportive husband… that was a role that I wanted… I also needed to be the person who was working in a professional capacity…thinking of how to care for her around the clock…. That was not a role I wanted…It was just necessary). A female participant who was taking care of her father with PD with a high WLB score of 18 indicating work-life imbalance, and low decision latitude of 52 described that she was transitioning to a new job at the time of the study interview. In addition to being the primary caregiver of her father who has severe PD and recently suffered a stroke, she has two children. She described her husband as financially supportive but not “helpful” with caregiving. She explained that in their culture, the female was expected to take on the caregiver role. Another spouse with a high WLB score (poor WLB, score of 20) described “running late for work” because she had to help her spouse with medications. As a result, she had to decrease work hours to meet increasing caregiver demands at home.

In this sample when caregiving outweighed balancing life, the caregiver contemplated giving up the working role. One daughter who retired from teaching and became a full-time caregiver for her mother stated “if not now, when”. She reflected on the point in time when she felt her mother really needed her help given the complexity of the PD symptoms, and she was the best person to understand and care for her mother. Additionally, she described that for her financial situation utilizing services for professional caregivers was expensive. Though she valued her work and it was meaningful, her decision to stop working reflected the dilemmas faced by many caregivers in this sample who have to balance financial demands. Perceptions of work-life balance in this sample group reflected the additive effects of perceived stress, quality of life, personal wellbeing. While the quantitative data did not show a significant association between work-life balance and caregiver burden, caregiver burden was more related to one’s personal stress, in those cases they considered giving up work.

There are several limitations to this study. First, the sample size was small (n=40), and predominantly white, female, and with higher level of education and exclusively white collar occupations. Previous studies have shown that the level of education has a positive relationship with the intention to continue working.⁵¹ Others have recommended that work and retirement for caregivers should be explored as a longitudinal process⁵² rather than cross-section analysis which is a limitation of our study. Length of time of caregiving was not recorded in this study. Thus, longitudinal studies with larger, more diverse sample sizes are needed to better understand WLB perspectives, predictors and examine outcomes. Additionally, while this sample had many in education, administration and sales, other job occupations were missing from this sample and would require a wider net of recruitment. Our study focused on the perspective of family caregivers and not the patient perspective. Future studies that examine the dyadic relationship of family caregiver and patient perspectives may expand on this information and how they collectively manage the disease. Patient and caregiver perceptions of the social impact of PD symptoms can vary.⁵³ Studying caregivers and patients may help to understand how decisions on in getting more support or eventually deciding whether assisted living or palliative care are made and therefore can help tailor intervention throughout their PD trajectory.⁵⁴ Finally, despite our maximum variation sampling technique, our sample was mostly spouses; exploring the dual working and caregiving role among other relationship types (e.g., children, sibling) is warranted. Durante et al. explored caregiving of adults with heart failure, which, like Parkinson’s Disease, is a chronic, progressive illness requiring increasing levels of help over time.⁵⁵ In that study of 229 caregivers, 58% were spouses, while 42% were non-spouses and had a harder time accepting their caregiving role. As the number of people advance with this neurodegenerative illness, a growing demand for family members will be required to step in and accept the caregiver role.

This study has several implications for employers and providers. Parkinson’s Disease is a long-term chronic condition that is projected to require more support over time resulting in work interruptions or permanent work separation. Given the vulnerability toward stress, poorer quality of life and wellbeing, employers also need to acknowledge that some of their employees may be caregivers at home and address potential needs and challenges. Job accommodations and family leave options may help support workers who also are caregivers. The results of this study may increase awareness of the influence of work-life imbalance on caregiver burden and stress. This serves as an implication to occupational healthcare providers and others who encounter caregivers who may be taking care of a family member with such a chronic, progressive illness.