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Working Family Caregivers’ Perception of Usefulness of an Online Employee Assistance Support Tool: A Pilot Study

Objectives: The population of older adults is growing rapidly, creating high demand for the involvement of working family caregivers. This concurrent mixed-methods study sought to obtain information from working family caregivers regarding their perceptions of the usefulness of an online employee assistance support tool. Methods: Working family caregivers (n = 15) parti-cipated in a semi-structured focus group completing a demographic survey and the Modified Caregiver Strain Index (MCSI). Results: Total MCSI score had a statistically significant positive relationship with hours of care provision per week and presented an inverse association with caregiver age. Caregiver age had a statistically significant inverse relationship with the perception of caregiving as confining. Qualitative data identified needs for family caregivers support in three major themes: knowledge, understanding, and connection. Discussion: This study highlights a myriad of caregiver burden experiences and the necessity of various supports for each caregiver’s unique situation beyond the traditional workplace polices.


Working Family Caregivers' Perception of Needs and Burden
Family caregivers are individuals who provide unpaid care for a recipient from either their family of origin, such as a parent or grandparent, or their family of choice, such as a friend, neighbor, or life partner (National Alliance for Caregiving & Emblem Health, 2010) [1]. In 2015, an estimated 34.2 million American adults served as family caregivers to older adults (AARP & National Alliance for Caregiving, 2015) [2]. With an estimated sixty percent of family caregivers engaging in full-time employment (AARP & National Alliance for Caregiving, 2015 [2]; Pew Research, 2018 [3]), the ability to balance the demands of family caregiving with the demands of paid employment, or "work," constitutes one of the challenges faced by those providing unpaid care to an ever-increasing older adult population. Furthermore, an individual's health, well-being, and quality of life can be affected by an overall life balance or imbalance (Matuska & Barrett, 2014) [4].
Several studies associate family caregiving with increased work interference such as increased absenteeism, work productivity loss, a reduction in work hours, and/or labor market withdrawal, as well as difficulty maintaining lifestyle balance between work and caregiving occupations (Burton et al., 2004 [12]). For many individuals, the occupation of work is an integral component of lifestyle balance (Fossey, 2019 [13]; Hunt, 2015 [14]).
Caregiving has been identified as having some positive aspects such as increased "sense of self-pride and fulfillment, perceptions of being needed, and opportunities to learn new skills and enhance relationships" (Grossman & Gruenewald, 2017, p 435) [17]. However, the provision of daily caregiving responsibilities can have negative consequences on one's psychological, physical, and social health (

Procedure
A mixed-methods design was used. Qualitative data examined the lived experience and opinions of working family caregivers, while quantitative data surveyed the caregivers' perceived level of strain as well as the relationship between perceived caregiver strain and form(s) of support desired. Prior to commencing

Sample
Sample selection was based on convenience sampling of working family caregivers from two local companies identified by the local non-profit agency for aging.
Recruitment of study participants was done by the employer. Inclusion criteria for caregiver participants was being 18 years old or over, employed, providing care for a family member or friend age 50 years old or over, and the ability to speak and understand English, as no translation services were available for this study. A total of 15 participants were included in the study.

Focus Group
Qualitative data gathered for the study came from focus group participant responses. A trained group facilitator led two employee focus groups (one for each local company) using a semi-structured format, posing a series of questions related to the online support tool to guide the conversation among working family caregivers. During the focus groups the aim was to explore caregiver perception of the usefulness of the online support tool and resources provided.

Modified Caregiver Strain Index (MCSI)
The MCSI was given to the participants to provide a quantitative measure of perceived caregiver strain experienced by the working family caregivers. The 13-item MCSI contains statements such as caregiving is confining, caregiving is a financial strain, or there have been work adjustments (Thornton & Travis, 2003) [24]. Items screen for strain across five major domains: financial, physical, psychological, social, and personal (Onega, 2008) [37]. Caregivers rank their responses to statements on an ordinal scale ranging from 0 to 2, where 2 indicates agreement with a statement on a regular basis, 1 indicates agreement with a statement sometimes, and 0 indicates disagreement with a statement. A total score is then calculated by adding all ranked responses. Descriptive categories are not provided to distinguish the level of caregiver strain, requiring a clinician's professional judgment to determine the level of caregiver strain according to total score and to identify "families who may benefit from more in-depth assessment and follow-up" (Onega, 2008, p. 65) [37]. Thornton and Travis (2003) [24] identified the internal reliability for the MCSI as 0.90.

Quantitative Analysis
Total scores were calculated for each participant's MCSI questionnaire. All demographic data and MCSI content were analyzed using descriptive statistics.

Qualitative Analysis
All focus group data were analyzed via thematic analysis allowing the investigators to identify patterns of meaning from the complex and detailed perspectives of focus group participants in a rigorous and trustworthy way. Researchers followed the process of thematic analysis as outlined by Nowell

Qualitative Data
Overall, focus group participants perceived the employee assistance support tool as a useful resource for supporting their roles as family caregivers. Considering participant responses in aggregate, researchers defined this overarching idea of support as "emotional or practical assistance in performing a life role" and further categorized it into three major themes: knowledge, understanding, and connection. The meaning of the theme of understanding, as defined by the researchers, is "awareness or insight for the application of knowledge to an individual circumstance", with three subthemes emerging. The first, understanding choices to support decision-making, refers to the participants' interest in an assortment of options that empower them to make an informed decision. Participants noted that the online tool "opens up a bunch of solutions" and "makes suggestions, but you felt that you still have the power to make a decision". The online tool also

Theme 3: Connection
The researchers defined the third theme, connection, as "establishing a link between two or more people, ideas, or services". The first subtheme that emerged was to create new connections for personal support or assistance, wherein participants requested online support or chat groups with fellow caregivers and helpful contact numbers for local organizations like area agencies on aging. In the checklist given to the second focus group, it is relevant to note that all participants displayed interest in the item, finding services to help your loved one or you as a caregiver, including that a phone consultation with a professional would be beneficial. The next subtheme identified was to reinforce existing connections. Participants were interested in sharing information generated by the online tool with the care recipient or other family members who assist with caregiving responsibilities. Participants noted that this information could help facilitate caregiving conversations with all stakeholders. For example, one participant noted that the tool would be useful to "sit down with [her] loved one and easily toggle through it and make it a little less scary as [they] start the planning process". Lastly, many participants expressed interest in connection to outside resources for caregiving, such as a national database of eldercare resources, a directory of firms that specialize in aspects of eldercare law, applicable documents for estate planning or power of attorney, and other relevant services.

Discussion
The objective of this mixed-methods study was to explore the perceptions of working caregivers on the usefulness of an online employee assistance support tool. Overall, the results emphasize the need to consider factors related to each family caregiver's unique role and caregiving situation when providing supportive services. A secondary objective was to quantitatively examine factors related to caregiver burden experienced by working family caregivers as a pilot assessment of factors that may be considered in further tool development.
The majority of participants in the present study were similar to the demographic profile of the "typical" caregiver in that they were female, an average age  [48]. Furthermore, the ability to choose specific "services and supports empowers caregivers to make their own decisions and may reduce feelings of burden" (Sundar et al., 2014, p. 762) [46].
This study had several limitations. The population was a convenience sample, as participants volunteered through a local non-profit agency for aging. The population sample also lacked variability in demographics, as most of the participants were women from the same geographic area and the participants lacked diversity in race and socioeconomic status. Many components of the study also lacked variability in response, specifically related to the amount and duration of time spent caregiving. Variables such as the complexity of the impairment of the care recipient were not examined. Finally, the study has limited generalizability due to its small sample size (n-15) and having only examined caregivers who were employed full time.

Implications
Caregivers express a need for factual information and emotional support to aid them in their caregiving role that is beyond current workplace policies such as