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Developing the Family Involvement Questionnaire-Long-Term Care: A Measure of Familial Involvement in the Lives of Residents at Long-Term Care Facilities

Developing the Family Involvement Questionnaire-Long-Term Care: A Measure of Familial Involvement... Abstract Introduction Existing measures designed to assess family involvement in the lives of older adults residing in long-term care facilities are basic, using visitation frequency as the prominent gauge of involvement in a situation specific fashion. The purpose of this study was to design and validate a measure of family involvement that could be used to gauge more aspects of family involvement than visitation alone and be useful in a variety of settings for both researchers and long-term care facility administrators. Methods Long-term facility staff were asked to assist in creating a 40-item questionnaire that used 4-point Likert scales to measure various aspects of family involvement. The finalized Family Involvement Questionnaire-Long-Term Care (FIQ-LTC) was distributed to the family members of older adults residing in long-term care facilities around the country. Results A total of 410 participants responded. Researchers found that the FIQ-LTC was highly reliable (α = .965). Results also indicated that a significant correlation between distance and overall involvement (r = −.121, p = .015) was no longer significant (r = .17, p = .740) when the effect of a question asking the frequency of visitation was controlled for. Discussion These results indicate that existing measures that use visitation frequency as the sole measure of involvement are insufficient. The newly developed FIQ-LTC can serve as a more complete measure of family involvement. Gerontology, Institution, Visitation It is well-established that adults aged 65 and older will constitute a larger and larger percentage of the United States’ population (Ortman, Velkoff, & Hogan, 2014). For instance, Ortman and colleagues showed that the percentage of U.S. residents aged 65 and older had increased from 9.8% in 1970 to 13% in 2010. By 2030, this age group is expected to make up around 20% of the total U.S. population. As the population of older adults in the United States grows, it can be assumed that long-term care will be utilized by more people. The United States Department of Health and Human Services published an article presenting the projected need of long-term care for older adults (Favreault & Dey, 2015). This article projects that 52.3% of adults turning 65 in 2015–2019 will need to utilize formal long-term care at some point in their lives. They also project that of adults turning 65 in 2015–2019, 33.4% will need more than 1 year of long-term care. The Transition to Long-Term Care Facilities Long-term care includes a wide range of services and supports to meet personal and health needs. Much of long-term care consists of assistance in everyday life, rather than formal medical care (Favreault & Dey, 2015). It is noted that over 75% of all long-term care provided to older adults is done by their family (Qualls, 2016). This support can include everything from helping with daily living activities to performing nursing/medical tasks. The decision to move into a long-term care facility is often made once this type of family caregiving is no longer viable. Factors that increase the likelihood of admission to long-term care facility include the onset of health problems, advancing age, and proximity of relatives willing to provide assistance (Keefe & Fancey, 2000). The transition from having long-term care provided by family members to a long-term care facility can drastically change the relationship between the older adult and their family members (Gladstone, Dupuis, & Wexler, 2006). The role of primary caregiver is suddenly shifted from the family members onto the long-term care facility staff. This change can be especially jarring because long-term care provided by family has very different priorities than long-term care provided in a facility. Long-term care provided by family is often flexible and motivated by a long-standing relationship with the older adult. Long-term care facilities, on the other hand, are structured around formal rules and technical efficiency (Russell & Foreman, 2002). Once an older adult is admitted into a long-term care facility, their family members shift from the role of primary caregiver to a supportive, visitor role. This transition can be a difficult one. Often, family members feel that their role becomes ambiguous following admission (Friedemann, Montgomery, Maiberger, & Smith, 1997). Because of this, family involvement with older adults drastically changes when they are admitted to a long-term care facility and established routines are disrupted. There is some evidence suggesting that this transition often goes smoothly and family members remain involved in their relative’s life after enrollment (Gaugler, 2005). However, substantial evidence suggests that the amount of contact between family members drastically decreases following admission (Port et al., 2001), and that characteristics of the contact changes (i.e., brief superficial exchanges). These mixed results suggest that more research is needed to provide an accurate grasp of family involvement in the lives of residents at long-term care facilities. Types of Family Involvement Family involvement with the care of the elderly can reflect the differences within those family units and appear very different for diverse families (Friedemann, Montgomery, Rice, & Farrell, 1999). When family members are responsible for providing long-term care to older adults, they typically do so unilaterally. However, once an older adult is admitted to a long-term care facility, the bulk of the long-term care is provided by the facility. Family members who remain involved in the older adult’s life typically serve to bolster areas of care that their long-term care facility does not provide (Gaugler, 2005). Baumbusch and Phinney (2014) described family involvement with care in long-term care facilities as being either “hands-on” or “hands-off.” “Hands-on” care describes assistance with activities of daily living, assistance with facility routines (i.e., assisting with lunch), and other direct interactions between the resident and their family members. “Hands-off” care refers to the interactions between family members and facility staff during which they attempt to influence the resident’s care indirectly. An example of this would be the family members of a resident suggesting ways in which staff can better meet the resident’s needs (Irving, 2015). These terms are useful, as they demonstrate that family involvement with residents at long-term care facilities can be direct or indirect. Another important aspect of family involvement in long-term care facilities is the emotional caregiving that the family members of residents can provide. In addition to the instrumental support that they provide, family members who remain involved in a resident’s life typically provide emotional support (Qualls, 2016). This can involve things such as providing comfort and consolation, as well as sharing in their personal successes and failures. Long-term care facility residents who end up relying entirely on their residential facility for caregiving often experience a scarcity of this type of emotional support. Benefits of Family Involvement There are several reasons why maintaining family involvement after admission into a long-term care facility is important. It is noted that facilities that have a strong relationship with family caregivers are likely to have more humane and caring policies (Levine & Kuerbis, 2002). For example, integrating the input of family members into long-term care facility policies and practices has been found to be an effective method of abuse prevention (Menio & Keller, 2000). In addition to shaping facility policies and practices, increased family involvement can have a more direct positive influence on resident outcomes. An early study of long-term care facility resident life satisfaction found that those residents who “met their desire for visitors” were likely to report higher life satisfaction than those whose desires were not met (Noelker & Harel, 1978). A more recent study has indicated that increased family involvement can lead to better therapeutic outcomes and a greater likelihood of adherence to rehabilitation programs (Nayeri, Mohammadi, Razi, & Kazemnejad, 2014). Plys and Bliwise (2013) found that frequency of familial contact had a moderately negative affiliation with depressive symptoms and a moderately positive relationship with the emotional connection between the resident and their primary family caregiver. In a similarly designed study, Greene and Monahan (1982) found that the frequency of visitations was negatively correlated with psychosocial impairment. Research has also suggested that long-term care facility residents who have a large degree of social engagement have concomitantly experienced greater longevity (Kiely, Simon, Jones, & Morris, 2000). Another effect of family involvement in the lives of long-term care facility residents is that it can improve the relationship between family members and facility staff (Gaugler, Anderson, Zarit, & Pearlin, 2004). This is important in that improved relationship between family members and facility staff is believed to improve outcomes for family members, facility staff members, and residents (Maas et al., 2004). This association between increased familial involvement and more positive relationships with facility staff also works in the other direction, as previous research indicates that the family members of long-term care facility residents are more likely to be involved when there is effective communication between themselves and facility staff (Robison et al., 2007). Fostering a cooperative relationship between facility staff and the family members of residents reduces the likelihood that an adversarial relationship will develop between the two parties (Safford, 1989). Looman, Noelker, Schur, Whitlatch, and Ejaz (2002) found that negative interactions between the family members and facility staff lead family members to believe that their family members were receiving insufficient care. Facility Interest in Measuring Family Involvement Because of the many benefits that increased levels of family involvement can have for long-term care facility residents, facility administrators would greatly benefit from having an idea as to the level of familial involvement in the lives of residents at their facility (Port, 2004). In addition, research has linked family involvement to several important factors related to long-term care facilities beyond patient outcomes. One problem that long-term facilities often encounter is that while they offer activities to their residents, the residents do not choose to engage in them (Tak, Kedia, Tongumpun, & Hong, 2015). This is a concern in that research has indicated engagement in activities is associated with better patient outcomes and greater adherence to rehabilitation routines, specifically with residents with dementia (Mansbach, Mace, Clark, & Firth, 2017). Family involvement has been found to be key in producing higher rates of resident activity and program participation (Dobbs et al., 2005). Another reason long-term care facilities might benefit from having a more accurate way to measure family involvement is to better shape policies promoting family involvement and addressing resident needs, many of which change during the course of the stay (Yamamoto-Mitani, Aneshensel, & Levy-Storms, 2002). Previous research indicates that facilities with policies that promote familial involvement are rated as providing better care by the family members of residents (Friedemann et al., 1997). Problems With Existing Measures of Involvement Unfortunately, there is a dearth of modern measures examining this phenomenon. Although measures of family involvement for older adults residing in long-term care facilities do exist, it appears that most of them may not be measuring involvement accurately or in a fashion that might be beneficial to more than one specific facility (Port et al., 2005). The first problem that many of these measures have is that they only gauge family involvement by looking at how often family members make in-person visits to their family member’s facility (Gaugler, Zarit, & Pearlin, 2003). This is problematic because previous research has indicated that distance is an important mediating factor in the frequency of visitation (Tsai, Tsai, & Huang, 2012). As can be expected, family members residing in locations far away from the facility their loved one is living in typically make less frequent visits than those who live nearby, but can remain involved in their loved one’s care. In addition, familial involvement encompasses status monitoring, advocacy, and many other factors, as well as the hands-on care provided during in-person visits, yet there is very little research examining family involvement as the multidimensional concept that it is (Williams, Zimmerman, & Williams, 2012). Comprehensive measures of family involvement need to expand into inquiry about methods of involvement besides just visitation. Other existing measures examine family involvement in long-term care facilities solely by looking at family member’s role in the caregiving process (Whitaker, 2009). These typically involve gauging how often the family member assists the resident with activities of daily living (ADL; Gaugler et al., 2004). The problem with only looking at assistance with ADLs, similar to looking at only visitation frequency, is that it neglects many potential methods of involvement and the impact they have on residents. For example, it does not address other “hands-off” methods of involvement such as providing emotional support (Qualls, 2016). Finally, as technology has advanced, new ways to remain involved in their loved one’s life have become available. For example, a recent study examining the use of videophones to conduct video conferences between residents at long-term care facilities and family members found that it can be an enriching method of communication (Demiris et al., 2008). Modern measures of family involvement need to account for advancements in technology that have made new methods of involvement possible. Rationale The purpose of this study was to develop a comprehensive and contemporary measure of involvement for family members of older adults residing in long-term care facilities. This questionnaire was designed to address the limitations in existing measures discussed previously. The questionnaire was developed in a way that would allow for researchers and long-term care facility staff to gather family involvement information quickly and from a larger group of people than possible through other methods such as interviews. Methods—Part 1 Design To create and distribute an effective measure of family involvement researchers divided the project into two parts. The first part involved assessing the content validity of the Family Involvement Questionnaire-Long-Term Care (FIQ-LTC) with employees of long-term care facilities. This was followed by distributing an initial draft of the FIQ-LTC to employees at long-term care facilities for reliability analysis and additional feedback. The second part consisted of distributing a finalized version of the FIQ-LTC to the family members of older adults residing in long-term care facilities. Because of the two-stage design of this study, the Methods and Results sections of this article have been divided into separate parts. Participants Participants recruited for this portion of the study consisted of employees at a long-term care facility for older adults located in neighboring city. Participants were given a package containing a consent form, the initial version of the FIQ-LTC, the staff feedback form, and a cover letter explaining the project and what was requested of them. A total of 15 packages containing these forms were given to the facility administrator for distribution. Eight completed packages were returned, placing the total participant count for this portion of the study at eight. Procedure Instrument Development and Content Validation Items included on this initial draft of the FIQ-LTC were drawn from several different sources. Among these were similar measures of family involvement developed for other populations such as school children (e.g., Fantuzzo, Tighe, & Childs, 2000). Questions were also drawn from the input of individuals who had personal experience with having loved ones taking up residence in long-term care facilities. Interviews with these individuals provided input from the target demographic, and allowed for creation of questions that addressed some of the ways that family members are involved that might otherwise have evaded attention. For example, the item “I ensure that my family member is pleased with their level of privacy,” was generated from this type of interview. Finally, a well-published psychologist who specialized in providing behavioral care to older adults provided additional input concerning the content of the instrument. His professional experience made him aware of additional ways that family members remain involved in their loved one’s life that would have otherwise been overlooked. Data Collection When all of this was done, the initial draft of the FIQ-LTC had a total of 38 questions. This version was distributed to participants and included a 3-point Likert scale for each item on the questionnaire. This Likert scale allowed participants to indicate how useful each item was for measuring family involvement by ranking each item as being either “not necessary,” “useful,” or “essential.” A feedback form was also constructed to allow for more detailed input on the initial draft of the FIQ-LTC. This form allowed those providing feedback on the FIQ-LTC to indicate if they believed that there were any items that could be added to make it a more comprehensive measure. This form also asked participants to provide general feedback on the FIQ-LTC and provided them with an opportunity for suggestions. Results—Part 1 Results of this portion of the study are detailed in Figure 1. To determine if there was agreement among the participants regarding the importance of each question, the internal consistency of the initial draft of the FIQ-LTC was calculated. Researchers found that the initial draft of the FIQ-LTC consisting of 38 items was highly reliable (α = .879). However, due to the large amount of individual feedback from participants the decision was made to modify the FIQ-LTC. Many of these modifications were small alterations to the language used in the questions to improve their clarity while maintaining their original intent. For example, question 3 was changed from “I talk with facility staff regarding my family member’s eating schedule,” to “I talk with facility staff regarding my family member’s eating habits.” This type of minor alteration was made to five other questions. Figure 1. Continued Figure 1. View largeDownload slide View largeDownload slide This table demonstrates how participants responded during part 1 of the study. Figure 1. View largeDownload slide View largeDownload slide This table demonstrates how participants responded during part 1 of the study. Other questions on the FIQ-LTC required more extensive alterations. For example, the item “I participate in raising funds or donate money to my family member’s facility,” was removed from the questionnaire because participants indicated that in most cases long-term care facilities are barred or discouraged from asking the family members of residents about their financial contributions to the facility. Examples of other items that were removed included, “I make sure my family member is able to perform home-living skills (laundry, dishes, etc.)” and “I feel that people with family members in the facility support each other.” Five additional questions were modified significantly or were removed. In most cases eliminated items were replaced with additional items suggested by participants. Items that were added to the instrument included, “I interact with my family member during the holidays,” “I give input into my family member’s care plan,” “I communicate with my family member over the internet,” “I try to help my family member transition into living in a long-term care facility,” “I come and have meals with my family member,” “I communicate with my family member through letters,” “I keep up to date on my family member’s health status,” “I assist my family member in managing their finances,” “I participate in family council,” and “I talk with facility staff about problems they feel my family member may be experiencing.” Methods—Part 2 Instruments The updated version of the FIQ-LTC was used in part 2 of the study (Figure 2). The final version of the FIQ-LTC consisted of 40 questions designed to measure various aspects of family involvement in the lives of older adults residing in long-term care facilities. The instrument included a 4-point Likert scale was used that included response options of “never,” “rarely,” “sometimes,” and “often.” Figure 2. Continued. Figure 2. View largeDownload slide View largeDownload slide The 40-item version of the FIQ-LTC that was distributed to subjects across 44 states. Figure 2. View largeDownload slide View largeDownload slide The 40-item version of the FIQ-LTC that was distributed to subjects across 44 states. In addition to the FIQ-LTC, participants were also provided with a demographics form designed to gather typical demographic information about participants (e.g., gender, ethnicity). In addition, participants were asked about their relation to the resident as well as how far away they lived (in miles) from their family member’s long-term care facility. Participants A total of 410 participants completed the FIQ-LTC. Participants identified as 45% male and 55% female. The majority of participants (86.3%) identified as Caucasian, while 4.1% identified as African American, 5.4% as Latino or Hispanic, 1% as Native American, 1.7% as Asian, and 1.5% as Other. The sample was drawn from a total of 45 states. Of the respondents that chose to indicate their relation to the person residing in the long-term care facility, 6 identified as siblings, 283 as children or step children, 5 as cousins, 16 as grandchildren, 14 as spouses or partners, and 9 as nieces or nephews. The majority (71.6%) of participants indicated that they lived 100 miles or less from the long-term care facility that their relative was residing in. Procedure Participants involved with this portion of the study were contacted in several ways. First, researchers met with staff at a number of long-term care facilities for older adults scattered throughout Minnesota. This did not include the long-term care facility that was involved with the first portion of the project. Researchers spoke to facility administrators and activity directors to discuss the best ways that the FIQ-LTC could be distributed to the family members of the older adults residing in their facility. Due to the widely varying regulations of the different long-term care facilities, surveys were distributed in several different ways. For the facilities that had the E-mail addresses of the family members, researchers were able to distribute the FIQ-LTC and other documents through the facility administrator or activity directors. This involved sending them an E-mail with a link, generated using Qualtrics®, to an online version of the survey. Online data collection was set up such that participants’ responses were recorded only if they completed all the questions on the FIQ-LTC. When long-term care facilities did not have E-mail addresses, family members of residents were contacted through alternative means. Many long-term care facilities mail documents to family members containing information about upcoming events or notices on a monthly basis. In these instances, facilities included a notification about the study with information about how to access the online survey with their monthly packet. Finally, to bolster the number of respondents and diversify the research pool, researchers utilized the distribution services offered by Qualtrics®. By paying Qualtrics® a flat fee, the researchers were able to specify the population that they needed to contact and the survey was distributed to individuals meeting the inclusion criteria. To make sure participant’s anonymity was protected, no means of differentiating between those participants recruited using the distribution services offered by Qualtrics® and those recruited through other means was recorded. Results—Part 2 Figure 3 illustrates the distribution of participant responses to each of the items on the FIQ-LTC. Internal consistency of the FIQ-LTC was calculated using Cronbach’s Alpha. The instrument was found to be highly reliable (α = .965). Figure 3. View largeDownload slide The distribution of responses given by the 410 family members involved with the second portion of the study. Figure 3. View largeDownload slide The distribution of responses given by the 410 family members involved with the second portion of the study. A principle component analysis was performed on the FIQ-LTC because there is only a very small body of research examining family involvement with older adults and there are no existing instruments resembling the FIQ-LTC. Because it was assumed that factors in this analysis would be correlated, an Oblique rotation method was performed. Principle component analysis found four factors with an eigenvalue greater than 1. A cutoff point of .4 was used for factor loading. The factors were named based on the items in the questionnaire that heavily loaded on each of them. The four subscales found were (a) interactions with facility administration and staff, (b) mediums used for interaction, (c) communication and providing care, and (d) in-person visitation. The interactions with facility administration and staff subscale consisted of 16 items (α = .952); mediums used for interaction consisted of 7 items (α = .870); communication and providing care consisted of 12 items (α = .916); and in-person visitation consisted of 4 items (α = .771). The item content and factor loading for the subscales are presented in Table 1. Figure 4 illustrates how participants responded to each factor. This figure pools the percentages of participant responses on each of the items that make up the factors. Table 1. Principle Component Analysis Structure for the FIQ-LTC Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 View Large Table 1. Principle Component Analysis Structure for the FIQ-LTC Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 View Large Figure 4. View largeDownload slide This figure demonstrates how participants responded on each factor developed during principle component analysis as described on page 15. Figure 4. View largeDownload slide This figure demonstrates how participants responded on each factor developed during principle component analysis as described on page 15. As discussed earlier, previous research indicates that distance can be a mediating factor on the level of overall family involvement. This is primarily because most existing measures of family involvement use the frequency of in-person visits as the singular indicator of family involvement (Gaugler, 2005). This leads to the question if this was still the case with the levels of involvement measured by the FIQ-LTC? To determine this, a new variable was created that added the participant’s scores on all the items together. Responses were assigned a numerical value ranging from 1 to 4, depending on the participant’s choice on the Likert scale. A higher score on this new variable was indicative of a high level of involvement in all the areas measured by the FIQ-LTC. It was noted that there was a significant negative correlation between participant’s scores on this new variable and the distance from the long-term care facility, r = −.121, p = .015. To determine if this correlation between distance and overall involvement would remain if the impact of the question measuring the frequency of in-person visitation was controlled for, a partial correlation was performed controlling for question 18, “I visit my family member in their long-term care facility.” It was found that when the influence of Question 18 was controlled for, the correlation between a person’s distance from the family member’s facility and the overall involvement score was no longer significant r = .17, p = .740. This makes sense, given that question 18 was the one that was most strongly negatively correlated with the participant’s distance from the loved one’s facility r ≤ .001, p = −.236. Discussion The purpose of this study was to develop a measure that could be used in long-term care facilities to gauge the level of involvement that the family members have in the lives of residents. This involved implementing a two-stage process in which the FIQ-LTC was first developed by collaborating with long-term care facility employees. The new FIQ-LTC measure was then validated for use by long-term care facilities by distributing the measure to the family members of residents. Internal consistency was high during both phases of the project. Principle component analysis found four factors with an eigenvalue greater than 1. These factors were labelled: interactions with facility administration and staff, mediums used for interaction, communication and providing care, and in-person visitation. All four factors had high to acceptable levels of internal consistency. Frequency data (as shown in Figure 3) was especially interesting not only because it indicated the ways that family members are involved with residents, but also because it indicated ways that they are not involved. For example, it is surprising that over half (51.5%) of respondents indicated that they never communicated with their loved one over the internet. It had been expected that this number would be significantly higher than it was, due to the wide variety of communication methods available on the internet. These results indicate that online communication methods are underutilized compared to more traditional methods of involvement. The most common interaction that family members reported was by staying up to date on their resident’s health status. This was followed by interacting with the resident during the holidays. This information might prove useful to both researchers and facility administrators who wish to structure situations that encourage family involvement, especially when pertaining to specific events (e.g., birthdays, holidays, and special occasions). Perhaps the most interesting outcome of this study was the finding that the significant negative correlation between a participant’s distance from their family member’s long-term care facility and their overall score on the questionnaire ceased to be significant when the effect of question 18, “I visit my family member in their long-term care facility” was controlled for. This indicates that while distance was a mitigating factor on participants’ overall score on the FIQ-LTC, this was largely due to the influence of question 18. This should serve as a warning to those who would consider in-person visitation as the sole measure of family involvement with older adults residing in long-term care facilities. Distance is an important factor to examine when measuring family involvement, but it may not be as predictive of a person’s overall level of involvement as was previously assumed. Future attempts to measure family involvement in the lives of long-term care facility residents should make sure to examine methods of family involvement that do not require in-person visitation alongside those that do. Perhaps with some facility training and planning new technologies might be incorporated to improve the contact that family living greater distances from care facilities might have (e.g., Skype® or Telepresence®). Implications for Practice Facilities can utilize the information acquired during this study in several ways. First, they can use the participant responses to gain an understanding of how the family members of residents in long-term care are typically interacting with their loved ones. This might give facility staff and administration and opportunity to monitor, and when noted and deemed appropriate, take steps to improve family involvement in their facility. Alternatively, the FIQ-LTC could be used to assess a series of facilities to gather information specific to how their facility compares, as well as to gain insights and ideas from other facilities. It is also not unusual for an organization to operate multiple facilities, and in these situations the information could give valuable information across facilities. Either of these approaches to utilizing the FIQ-LTC would allow facilities to selectively allocate or adjust resources to either improving family member participation in methods of involvement that are currently being neglected or let them know which methods of involvement that they can focus on to encourage the most amount of involvement possible. Limitations Although this measure is more exhaustive than existing measures of family involvement, it likely does not include every way that family members remain involved in the lives of long-term care facility residents after admission. Adjustments and alterations can be made easily in future versions. However, the current study suggests that the FIQ-LTC is expansive enough to give administrators a broad idea of the level of family involvement present in their facility. Another limitation of the study is that the questions in the survey are not weighted based on an individual’s distance from their family member’s long-term care facility. This might be accomplished in a future distribution of the measure. The only way that an individual’s score of overall involvement on the FIQ-LTC can be compared to another’s is to look at the summed scores of their responses on all of the questions. This means that a person who lives close enough to make frequent in-person visitations will have a higher score than those who do not, even if, in all other aspects, they are equally involved. This is likely because they have more methods of involvement available to them on the FIQ-LTC than those who live far away. The FIQ-LTC is not a measure designed to be used to compare one family member’s level of involvement with another’s. Rather, it is a tool for noticing trends in the ways that the family members of older adults residing in long-term care facility remain involved in their lives following admission. Another limitation of the current study is its reliance on Likert scales to measure family involvement. This is potentially problematic, as participants’ level of involvement is determined entirely by their own perception. Different participants may have very different definitions of what they consider doing something “Often.” For example, one person may think that visiting once a week is considered doing so “Often,” while another may think doing so once a month qualifies as such. There is also an overreliance on participants’ perceptions of their own activities. This problem is common with questionnaires that utilize Likert scales. While this tool was believed to best serve the development of this questionnaire, it does have several faults that come with it. Finally, the results of this study cannot be examined to determine if individual items on the FIQ-TEC are as correlated with improved care as is the frequency of visitation. However, this can be addressed in future research that tracks some sort of dependent variable, such as treatment adherence, and looks for significant correlations between that score and the scores on each item included in the FIQ-LTC. This study opens the door to this as they now have a measure that can be utilized in their study. Implications for Future Research This study provides a foundation for future research into family involvement among the residents of long-term care facilities that house older adults. Geriatric researchers may be interested in adapting the FIQ-LTC to include more items or to serve as a more specific measure of an aspect of involvement. One aspect of family involvement that warrants further examination is the methods that family members use to contact their loved ones. Several communication methods were examined in the present study, but this was by no means an exhaustive collection of all communication methods. For example, questions about home and cellular phone usage, video chat, texting, and other methods of communication could be added to the FIQ-LTC to make it a more complete list. It is likely that these methods of communication will become more prevalent as the populations of older adults in long-term care facilities have more and more exposure to them before admission. This could provide more detailed information to both researchers and long-term care facility staff and administration about how family members stay connected with facility residents after admission. Future researchers might also benefit from trimming potentially redundant items from the FIQ-LTC. By doing so they might be able to make the FIQ-LTC a more concise tool measuring family involvement. Future research might focus on creating a measure of family involvement that utilizes a method of responding that allows for more detailed data collection. Although Likert scales worked well for this project, using them came with several drawbacks. As discussed earlier, participants may have a very different definition of what they consider “Rarely” and “Often.” Allowing participants to provide numerical data indicating exactly how often they do something would allow researchers to have a more concrete dataset to analyze. Another option would be to add a “Not applicable” choice to the Likert scale. Some older adults residing in long-term care facilities have experienced cognitive or physical decline that may make an aspect of family involvement impossible. For example, Question 23, “I make sure my family member has the means to easily move around their facility,” does not apply to residents that are bedridden. This might allow for participants to provide an answer that feels more accurately represents their situation. One more study that might prove useful would to conduct an examination into how much family members would like to be involved. Oftentimes the family members of long-term care facilities would like to be more involved than is feasible. Conducting an examination into how family members would like to be involved in the ideal situation might provide long-term care facility administration with ideas on how they can increase involvement. Long-term care facility administration and staff can utilize the information gathered in this study to guide future attempts to increase family involvement with residents. By utilizing the FIQ, they can determine the ways in which family members are involved with their relatives, as well as the way in which they are not. As discussed earlier, (51.5%) of respondents indicated that they never communicated with their loved one over the internet. Given the increased availability of online communication methods, this might be an aspect of family involvement that long-term care facility administrators might be interested in promoting. For example, long-term care facility administrators might be interested in installing videophones in resident’s homes (Demiris et al., 2008). Utilizing technology in this manner would open new methods for families to remain involved with long-term care facility residents. Through collaboration with long-term care faculties, future researchers can use the findings of this study and the measure created therein to direct future inquiry into what steps long-term care facilities can take to improve family involvement in the lives of their residents. Conflict of Interest None reported. References Baumbusch , J. , & Phinney , A . ( 2014 ). Invisible hands: The role of highly involved families in long-term residential care . Journal of Family Nursing , 20 , 73 – 97 . doi:10.1177/1074840713507777 Google Scholar Crossref Search ADS PubMed Demiris , G. , Oliver , D. R. , Hensel , B. , Dickey , G. , Rantz , M. , & Skubic , M . ( 2008 ). 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This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Gerontologist Oxford University Press

Developing the Family Involvement Questionnaire-Long-Term Care: A Measure of Familial Involvement in the Lives of Residents at Long-Term Care Facilities

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: [email protected].
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0016-9013
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Abstract

Abstract Introduction Existing measures designed to assess family involvement in the lives of older adults residing in long-term care facilities are basic, using visitation frequency as the prominent gauge of involvement in a situation specific fashion. The purpose of this study was to design and validate a measure of family involvement that could be used to gauge more aspects of family involvement than visitation alone and be useful in a variety of settings for both researchers and long-term care facility administrators. Methods Long-term facility staff were asked to assist in creating a 40-item questionnaire that used 4-point Likert scales to measure various aspects of family involvement. The finalized Family Involvement Questionnaire-Long-Term Care (FIQ-LTC) was distributed to the family members of older adults residing in long-term care facilities around the country. Results A total of 410 participants responded. Researchers found that the FIQ-LTC was highly reliable (α = .965). Results also indicated that a significant correlation between distance and overall involvement (r = −.121, p = .015) was no longer significant (r = .17, p = .740) when the effect of a question asking the frequency of visitation was controlled for. Discussion These results indicate that existing measures that use visitation frequency as the sole measure of involvement are insufficient. The newly developed FIQ-LTC can serve as a more complete measure of family involvement. Gerontology, Institution, Visitation It is well-established that adults aged 65 and older will constitute a larger and larger percentage of the United States’ population (Ortman, Velkoff, & Hogan, 2014). For instance, Ortman and colleagues showed that the percentage of U.S. residents aged 65 and older had increased from 9.8% in 1970 to 13% in 2010. By 2030, this age group is expected to make up around 20% of the total U.S. population. As the population of older adults in the United States grows, it can be assumed that long-term care will be utilized by more people. The United States Department of Health and Human Services published an article presenting the projected need of long-term care for older adults (Favreault & Dey, 2015). This article projects that 52.3% of adults turning 65 in 2015–2019 will need to utilize formal long-term care at some point in their lives. They also project that of adults turning 65 in 2015–2019, 33.4% will need more than 1 year of long-term care. The Transition to Long-Term Care Facilities Long-term care includes a wide range of services and supports to meet personal and health needs. Much of long-term care consists of assistance in everyday life, rather than formal medical care (Favreault & Dey, 2015). It is noted that over 75% of all long-term care provided to older adults is done by their family (Qualls, 2016). This support can include everything from helping with daily living activities to performing nursing/medical tasks. The decision to move into a long-term care facility is often made once this type of family caregiving is no longer viable. Factors that increase the likelihood of admission to long-term care facility include the onset of health problems, advancing age, and proximity of relatives willing to provide assistance (Keefe & Fancey, 2000). The transition from having long-term care provided by family members to a long-term care facility can drastically change the relationship between the older adult and their family members (Gladstone, Dupuis, & Wexler, 2006). The role of primary caregiver is suddenly shifted from the family members onto the long-term care facility staff. This change can be especially jarring because long-term care provided by family has very different priorities than long-term care provided in a facility. Long-term care provided by family is often flexible and motivated by a long-standing relationship with the older adult. Long-term care facilities, on the other hand, are structured around formal rules and technical efficiency (Russell & Foreman, 2002). Once an older adult is admitted into a long-term care facility, their family members shift from the role of primary caregiver to a supportive, visitor role. This transition can be a difficult one. Often, family members feel that their role becomes ambiguous following admission (Friedemann, Montgomery, Maiberger, & Smith, 1997). Because of this, family involvement with older adults drastically changes when they are admitted to a long-term care facility and established routines are disrupted. There is some evidence suggesting that this transition often goes smoothly and family members remain involved in their relative’s life after enrollment (Gaugler, 2005). However, substantial evidence suggests that the amount of contact between family members drastically decreases following admission (Port et al., 2001), and that characteristics of the contact changes (i.e., brief superficial exchanges). These mixed results suggest that more research is needed to provide an accurate grasp of family involvement in the lives of residents at long-term care facilities. Types of Family Involvement Family involvement with the care of the elderly can reflect the differences within those family units and appear very different for diverse families (Friedemann, Montgomery, Rice, & Farrell, 1999). When family members are responsible for providing long-term care to older adults, they typically do so unilaterally. However, once an older adult is admitted to a long-term care facility, the bulk of the long-term care is provided by the facility. Family members who remain involved in the older adult’s life typically serve to bolster areas of care that their long-term care facility does not provide (Gaugler, 2005). Baumbusch and Phinney (2014) described family involvement with care in long-term care facilities as being either “hands-on” or “hands-off.” “Hands-on” care describes assistance with activities of daily living, assistance with facility routines (i.e., assisting with lunch), and other direct interactions between the resident and their family members. “Hands-off” care refers to the interactions between family members and facility staff during which they attempt to influence the resident’s care indirectly. An example of this would be the family members of a resident suggesting ways in which staff can better meet the resident’s needs (Irving, 2015). These terms are useful, as they demonstrate that family involvement with residents at long-term care facilities can be direct or indirect. Another important aspect of family involvement in long-term care facilities is the emotional caregiving that the family members of residents can provide. In addition to the instrumental support that they provide, family members who remain involved in a resident’s life typically provide emotional support (Qualls, 2016). This can involve things such as providing comfort and consolation, as well as sharing in their personal successes and failures. Long-term care facility residents who end up relying entirely on their residential facility for caregiving often experience a scarcity of this type of emotional support. Benefits of Family Involvement There are several reasons why maintaining family involvement after admission into a long-term care facility is important. It is noted that facilities that have a strong relationship with family caregivers are likely to have more humane and caring policies (Levine & Kuerbis, 2002). For example, integrating the input of family members into long-term care facility policies and practices has been found to be an effective method of abuse prevention (Menio & Keller, 2000). In addition to shaping facility policies and practices, increased family involvement can have a more direct positive influence on resident outcomes. An early study of long-term care facility resident life satisfaction found that those residents who “met their desire for visitors” were likely to report higher life satisfaction than those whose desires were not met (Noelker & Harel, 1978). A more recent study has indicated that increased family involvement can lead to better therapeutic outcomes and a greater likelihood of adherence to rehabilitation programs (Nayeri, Mohammadi, Razi, & Kazemnejad, 2014). Plys and Bliwise (2013) found that frequency of familial contact had a moderately negative affiliation with depressive symptoms and a moderately positive relationship with the emotional connection between the resident and their primary family caregiver. In a similarly designed study, Greene and Monahan (1982) found that the frequency of visitations was negatively correlated with psychosocial impairment. Research has also suggested that long-term care facility residents who have a large degree of social engagement have concomitantly experienced greater longevity (Kiely, Simon, Jones, & Morris, 2000). Another effect of family involvement in the lives of long-term care facility residents is that it can improve the relationship between family members and facility staff (Gaugler, Anderson, Zarit, & Pearlin, 2004). This is important in that improved relationship between family members and facility staff is believed to improve outcomes for family members, facility staff members, and residents (Maas et al., 2004). This association between increased familial involvement and more positive relationships with facility staff also works in the other direction, as previous research indicates that the family members of long-term care facility residents are more likely to be involved when there is effective communication between themselves and facility staff (Robison et al., 2007). Fostering a cooperative relationship between facility staff and the family members of residents reduces the likelihood that an adversarial relationship will develop between the two parties (Safford, 1989). Looman, Noelker, Schur, Whitlatch, and Ejaz (2002) found that negative interactions between the family members and facility staff lead family members to believe that their family members were receiving insufficient care. Facility Interest in Measuring Family Involvement Because of the many benefits that increased levels of family involvement can have for long-term care facility residents, facility administrators would greatly benefit from having an idea as to the level of familial involvement in the lives of residents at their facility (Port, 2004). In addition, research has linked family involvement to several important factors related to long-term care facilities beyond patient outcomes. One problem that long-term facilities often encounter is that while they offer activities to their residents, the residents do not choose to engage in them (Tak, Kedia, Tongumpun, & Hong, 2015). This is a concern in that research has indicated engagement in activities is associated with better patient outcomes and greater adherence to rehabilitation routines, specifically with residents with dementia (Mansbach, Mace, Clark, & Firth, 2017). Family involvement has been found to be key in producing higher rates of resident activity and program participation (Dobbs et al., 2005). Another reason long-term care facilities might benefit from having a more accurate way to measure family involvement is to better shape policies promoting family involvement and addressing resident needs, many of which change during the course of the stay (Yamamoto-Mitani, Aneshensel, & Levy-Storms, 2002). Previous research indicates that facilities with policies that promote familial involvement are rated as providing better care by the family members of residents (Friedemann et al., 1997). Problems With Existing Measures of Involvement Unfortunately, there is a dearth of modern measures examining this phenomenon. Although measures of family involvement for older adults residing in long-term care facilities do exist, it appears that most of them may not be measuring involvement accurately or in a fashion that might be beneficial to more than one specific facility (Port et al., 2005). The first problem that many of these measures have is that they only gauge family involvement by looking at how often family members make in-person visits to their family member’s facility (Gaugler, Zarit, & Pearlin, 2003). This is problematic because previous research has indicated that distance is an important mediating factor in the frequency of visitation (Tsai, Tsai, & Huang, 2012). As can be expected, family members residing in locations far away from the facility their loved one is living in typically make less frequent visits than those who live nearby, but can remain involved in their loved one’s care. In addition, familial involvement encompasses status monitoring, advocacy, and many other factors, as well as the hands-on care provided during in-person visits, yet there is very little research examining family involvement as the multidimensional concept that it is (Williams, Zimmerman, & Williams, 2012). Comprehensive measures of family involvement need to expand into inquiry about methods of involvement besides just visitation. Other existing measures examine family involvement in long-term care facilities solely by looking at family member’s role in the caregiving process (Whitaker, 2009). These typically involve gauging how often the family member assists the resident with activities of daily living (ADL; Gaugler et al., 2004). The problem with only looking at assistance with ADLs, similar to looking at only visitation frequency, is that it neglects many potential methods of involvement and the impact they have on residents. For example, it does not address other “hands-off” methods of involvement such as providing emotional support (Qualls, 2016). Finally, as technology has advanced, new ways to remain involved in their loved one’s life have become available. For example, a recent study examining the use of videophones to conduct video conferences between residents at long-term care facilities and family members found that it can be an enriching method of communication (Demiris et al., 2008). Modern measures of family involvement need to account for advancements in technology that have made new methods of involvement possible. Rationale The purpose of this study was to develop a comprehensive and contemporary measure of involvement for family members of older adults residing in long-term care facilities. This questionnaire was designed to address the limitations in existing measures discussed previously. The questionnaire was developed in a way that would allow for researchers and long-term care facility staff to gather family involvement information quickly and from a larger group of people than possible through other methods such as interviews. Methods—Part 1 Design To create and distribute an effective measure of family involvement researchers divided the project into two parts. The first part involved assessing the content validity of the Family Involvement Questionnaire-Long-Term Care (FIQ-LTC) with employees of long-term care facilities. This was followed by distributing an initial draft of the FIQ-LTC to employees at long-term care facilities for reliability analysis and additional feedback. The second part consisted of distributing a finalized version of the FIQ-LTC to the family members of older adults residing in long-term care facilities. Because of the two-stage design of this study, the Methods and Results sections of this article have been divided into separate parts. Participants Participants recruited for this portion of the study consisted of employees at a long-term care facility for older adults located in neighboring city. Participants were given a package containing a consent form, the initial version of the FIQ-LTC, the staff feedback form, and a cover letter explaining the project and what was requested of them. A total of 15 packages containing these forms were given to the facility administrator for distribution. Eight completed packages were returned, placing the total participant count for this portion of the study at eight. Procedure Instrument Development and Content Validation Items included on this initial draft of the FIQ-LTC were drawn from several different sources. Among these were similar measures of family involvement developed for other populations such as school children (e.g., Fantuzzo, Tighe, & Childs, 2000). Questions were also drawn from the input of individuals who had personal experience with having loved ones taking up residence in long-term care facilities. Interviews with these individuals provided input from the target demographic, and allowed for creation of questions that addressed some of the ways that family members are involved that might otherwise have evaded attention. For example, the item “I ensure that my family member is pleased with their level of privacy,” was generated from this type of interview. Finally, a well-published psychologist who specialized in providing behavioral care to older adults provided additional input concerning the content of the instrument. His professional experience made him aware of additional ways that family members remain involved in their loved one’s life that would have otherwise been overlooked. Data Collection When all of this was done, the initial draft of the FIQ-LTC had a total of 38 questions. This version was distributed to participants and included a 3-point Likert scale for each item on the questionnaire. This Likert scale allowed participants to indicate how useful each item was for measuring family involvement by ranking each item as being either “not necessary,” “useful,” or “essential.” A feedback form was also constructed to allow for more detailed input on the initial draft of the FIQ-LTC. This form allowed those providing feedback on the FIQ-LTC to indicate if they believed that there were any items that could be added to make it a more comprehensive measure. This form also asked participants to provide general feedback on the FIQ-LTC and provided them with an opportunity for suggestions. Results—Part 1 Results of this portion of the study are detailed in Figure 1. To determine if there was agreement among the participants regarding the importance of each question, the internal consistency of the initial draft of the FIQ-LTC was calculated. Researchers found that the initial draft of the FIQ-LTC consisting of 38 items was highly reliable (α = .879). However, due to the large amount of individual feedback from participants the decision was made to modify the FIQ-LTC. Many of these modifications were small alterations to the language used in the questions to improve their clarity while maintaining their original intent. For example, question 3 was changed from “I talk with facility staff regarding my family member’s eating schedule,” to “I talk with facility staff regarding my family member’s eating habits.” This type of minor alteration was made to five other questions. Figure 1. Continued Figure 1. View largeDownload slide View largeDownload slide This table demonstrates how participants responded during part 1 of the study. Figure 1. View largeDownload slide View largeDownload slide This table demonstrates how participants responded during part 1 of the study. Other questions on the FIQ-LTC required more extensive alterations. For example, the item “I participate in raising funds or donate money to my family member’s facility,” was removed from the questionnaire because participants indicated that in most cases long-term care facilities are barred or discouraged from asking the family members of residents about their financial contributions to the facility. Examples of other items that were removed included, “I make sure my family member is able to perform home-living skills (laundry, dishes, etc.)” and “I feel that people with family members in the facility support each other.” Five additional questions were modified significantly or were removed. In most cases eliminated items were replaced with additional items suggested by participants. Items that were added to the instrument included, “I interact with my family member during the holidays,” “I give input into my family member’s care plan,” “I communicate with my family member over the internet,” “I try to help my family member transition into living in a long-term care facility,” “I come and have meals with my family member,” “I communicate with my family member through letters,” “I keep up to date on my family member’s health status,” “I assist my family member in managing their finances,” “I participate in family council,” and “I talk with facility staff about problems they feel my family member may be experiencing.” Methods—Part 2 Instruments The updated version of the FIQ-LTC was used in part 2 of the study (Figure 2). The final version of the FIQ-LTC consisted of 40 questions designed to measure various aspects of family involvement in the lives of older adults residing in long-term care facilities. The instrument included a 4-point Likert scale was used that included response options of “never,” “rarely,” “sometimes,” and “often.” Figure 2. Continued. Figure 2. View largeDownload slide View largeDownload slide The 40-item version of the FIQ-LTC that was distributed to subjects across 44 states. Figure 2. View largeDownload slide View largeDownload slide The 40-item version of the FIQ-LTC that was distributed to subjects across 44 states. In addition to the FIQ-LTC, participants were also provided with a demographics form designed to gather typical demographic information about participants (e.g., gender, ethnicity). In addition, participants were asked about their relation to the resident as well as how far away they lived (in miles) from their family member’s long-term care facility. Participants A total of 410 participants completed the FIQ-LTC. Participants identified as 45% male and 55% female. The majority of participants (86.3%) identified as Caucasian, while 4.1% identified as African American, 5.4% as Latino or Hispanic, 1% as Native American, 1.7% as Asian, and 1.5% as Other. The sample was drawn from a total of 45 states. Of the respondents that chose to indicate their relation to the person residing in the long-term care facility, 6 identified as siblings, 283 as children or step children, 5 as cousins, 16 as grandchildren, 14 as spouses or partners, and 9 as nieces or nephews. The majority (71.6%) of participants indicated that they lived 100 miles or less from the long-term care facility that their relative was residing in. Procedure Participants involved with this portion of the study were contacted in several ways. First, researchers met with staff at a number of long-term care facilities for older adults scattered throughout Minnesota. This did not include the long-term care facility that was involved with the first portion of the project. Researchers spoke to facility administrators and activity directors to discuss the best ways that the FIQ-LTC could be distributed to the family members of the older adults residing in their facility. Due to the widely varying regulations of the different long-term care facilities, surveys were distributed in several different ways. For the facilities that had the E-mail addresses of the family members, researchers were able to distribute the FIQ-LTC and other documents through the facility administrator or activity directors. This involved sending them an E-mail with a link, generated using Qualtrics®, to an online version of the survey. Online data collection was set up such that participants’ responses were recorded only if they completed all the questions on the FIQ-LTC. When long-term care facilities did not have E-mail addresses, family members of residents were contacted through alternative means. Many long-term care facilities mail documents to family members containing information about upcoming events or notices on a monthly basis. In these instances, facilities included a notification about the study with information about how to access the online survey with their monthly packet. Finally, to bolster the number of respondents and diversify the research pool, researchers utilized the distribution services offered by Qualtrics®. By paying Qualtrics® a flat fee, the researchers were able to specify the population that they needed to contact and the survey was distributed to individuals meeting the inclusion criteria. To make sure participant’s anonymity was protected, no means of differentiating between those participants recruited using the distribution services offered by Qualtrics® and those recruited through other means was recorded. Results—Part 2 Figure 3 illustrates the distribution of participant responses to each of the items on the FIQ-LTC. Internal consistency of the FIQ-LTC was calculated using Cronbach’s Alpha. The instrument was found to be highly reliable (α = .965). Figure 3. View largeDownload slide The distribution of responses given by the 410 family members involved with the second portion of the study. Figure 3. View largeDownload slide The distribution of responses given by the 410 family members involved with the second portion of the study. A principle component analysis was performed on the FIQ-LTC because there is only a very small body of research examining family involvement with older adults and there are no existing instruments resembling the FIQ-LTC. Because it was assumed that factors in this analysis would be correlated, an Oblique rotation method was performed. Principle component analysis found four factors with an eigenvalue greater than 1. A cutoff point of .4 was used for factor loading. The factors were named based on the items in the questionnaire that heavily loaded on each of them. The four subscales found were (a) interactions with facility administration and staff, (b) mediums used for interaction, (c) communication and providing care, and (d) in-person visitation. The interactions with facility administration and staff subscale consisted of 16 items (α = .952); mediums used for interaction consisted of 7 items (α = .870); communication and providing care consisted of 12 items (α = .916); and in-person visitation consisted of 4 items (α = .771). The item content and factor loading for the subscales are presented in Table 1. Figure 4 illustrates how participants responded to each factor. This figure pools the percentages of participant responses on each of the items that make up the factors. Table 1. Principle Component Analysis Structure for the FIQ-LTC Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 View Large Table 1. Principle Component Analysis Structure for the FIQ-LTC Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 Structure Oblique loadings Factor 1: Interactions with facility administration and staff I talk to facility staff about problems my family member may be experiencing 0.886 I talk with facility staff regarding my family member’s eating habits 0.852 I talk with facility staff about problems they feel my family member may be experiencing 0.799 I talk to facility staff to ensure my family member has access to stimulating activities 0.736 I contact facility staff by phone or E-mail 0.732 I speak with facility staff if I am concerned with something my family member has said 0.713 I talk to facility staff about community and facility rules 0.708 I contact my family member’s facility if I have any questions 0.702 I talk to facility staff about my family member’s engagement in their community 0.650 I suggest possible activities to staff 0.612 If my family member mentions one of their personal items is missing, I speak to facility staff about it 0.601 I inquire whether my family member is engaging in community activities 0.598 I talk to facility staff about my family member’s friends and social life 0.581 I give input into my family member’s care plan 0.527 I attend care conferences with staff to discuss my family member’s general happiness and well-being 0.504 I ensure that my family member has access to what they need for daily living (i.e., food, toiletries) 0.482 Factor 2: Mediums used for interaction I suggest possible activities to staff 0.406 I communicate with my family member over the Internet 0.855 I communicate with my family member through letters 0.776 I volunteer at my family member’s facility 0.756 I participate in family council 0.539 I come and have meals with my family member 0.485 I talk to other people who have family members in the same facility 0.442 Factor 3: Communication and providing care I talk to my family member about how their day was 0.857 I talk to my family member about their interests 0.855 I listen to my family member’s concerns regarding their facility 0.804 I encourage my family member to engage in social activities 0.673 I try to help my family member transition into living in a long-term care facility 0.565 I bring or send my family member gifts 0.545 I make sure my family member has the means to easily move around their facility 0.523 I feel that facility staff encourages family members to interact with residents 0.464 I keep up to date on my family member’s health status 0.452 I ensure that my family member is satisfied with their level of privacy 0.441 I make sure my family member has access to transportation 0.422 I help my family member with tasks they may be struggling with 0.401 Factor 4: In person visitation I come and have meals with my family member 0.451 I visit my family member in their long-term care facility 0.714 I interact with my family member during the holidays 0.581 I attend family activities offered by my family member’s facility 0.490 View Large Figure 4. View largeDownload slide This figure demonstrates how participants responded on each factor developed during principle component analysis as described on page 15. Figure 4. View largeDownload slide This figure demonstrates how participants responded on each factor developed during principle component analysis as described on page 15. As discussed earlier, previous research indicates that distance can be a mediating factor on the level of overall family involvement. This is primarily because most existing measures of family involvement use the frequency of in-person visits as the singular indicator of family involvement (Gaugler, 2005). This leads to the question if this was still the case with the levels of involvement measured by the FIQ-LTC? To determine this, a new variable was created that added the participant’s scores on all the items together. Responses were assigned a numerical value ranging from 1 to 4, depending on the participant’s choice on the Likert scale. A higher score on this new variable was indicative of a high level of involvement in all the areas measured by the FIQ-LTC. It was noted that there was a significant negative correlation between participant’s scores on this new variable and the distance from the long-term care facility, r = −.121, p = .015. To determine if this correlation between distance and overall involvement would remain if the impact of the question measuring the frequency of in-person visitation was controlled for, a partial correlation was performed controlling for question 18, “I visit my family member in their long-term care facility.” It was found that when the influence of Question 18 was controlled for, the correlation between a person’s distance from the family member’s facility and the overall involvement score was no longer significant r = .17, p = .740. This makes sense, given that question 18 was the one that was most strongly negatively correlated with the participant’s distance from the loved one’s facility r ≤ .001, p = −.236. Discussion The purpose of this study was to develop a measure that could be used in long-term care facilities to gauge the level of involvement that the family members have in the lives of residents. This involved implementing a two-stage process in which the FIQ-LTC was first developed by collaborating with long-term care facility employees. The new FIQ-LTC measure was then validated for use by long-term care facilities by distributing the measure to the family members of residents. Internal consistency was high during both phases of the project. Principle component analysis found four factors with an eigenvalue greater than 1. These factors were labelled: interactions with facility administration and staff, mediums used for interaction, communication and providing care, and in-person visitation. All four factors had high to acceptable levels of internal consistency. Frequency data (as shown in Figure 3) was especially interesting not only because it indicated the ways that family members are involved with residents, but also because it indicated ways that they are not involved. For example, it is surprising that over half (51.5%) of respondents indicated that they never communicated with their loved one over the internet. It had been expected that this number would be significantly higher than it was, due to the wide variety of communication methods available on the internet. These results indicate that online communication methods are underutilized compared to more traditional methods of involvement. The most common interaction that family members reported was by staying up to date on their resident’s health status. This was followed by interacting with the resident during the holidays. This information might prove useful to both researchers and facility administrators who wish to structure situations that encourage family involvement, especially when pertaining to specific events (e.g., birthdays, holidays, and special occasions). Perhaps the most interesting outcome of this study was the finding that the significant negative correlation between a participant’s distance from their family member’s long-term care facility and their overall score on the questionnaire ceased to be significant when the effect of question 18, “I visit my family member in their long-term care facility” was controlled for. This indicates that while distance was a mitigating factor on participants’ overall score on the FIQ-LTC, this was largely due to the influence of question 18. This should serve as a warning to those who would consider in-person visitation as the sole measure of family involvement with older adults residing in long-term care facilities. Distance is an important factor to examine when measuring family involvement, but it may not be as predictive of a person’s overall level of involvement as was previously assumed. Future attempts to measure family involvement in the lives of long-term care facility residents should make sure to examine methods of family involvement that do not require in-person visitation alongside those that do. Perhaps with some facility training and planning new technologies might be incorporated to improve the contact that family living greater distances from care facilities might have (e.g., Skype® or Telepresence®). Implications for Practice Facilities can utilize the information acquired during this study in several ways. First, they can use the participant responses to gain an understanding of how the family members of residents in long-term care are typically interacting with their loved ones. This might give facility staff and administration and opportunity to monitor, and when noted and deemed appropriate, take steps to improve family involvement in their facility. Alternatively, the FIQ-LTC could be used to assess a series of facilities to gather information specific to how their facility compares, as well as to gain insights and ideas from other facilities. It is also not unusual for an organization to operate multiple facilities, and in these situations the information could give valuable information across facilities. Either of these approaches to utilizing the FIQ-LTC would allow facilities to selectively allocate or adjust resources to either improving family member participation in methods of involvement that are currently being neglected or let them know which methods of involvement that they can focus on to encourage the most amount of involvement possible. Limitations Although this measure is more exhaustive than existing measures of family involvement, it likely does not include every way that family members remain involved in the lives of long-term care facility residents after admission. Adjustments and alterations can be made easily in future versions. However, the current study suggests that the FIQ-LTC is expansive enough to give administrators a broad idea of the level of family involvement present in their facility. Another limitation of the study is that the questions in the survey are not weighted based on an individual’s distance from their family member’s long-term care facility. This might be accomplished in a future distribution of the measure. The only way that an individual’s score of overall involvement on the FIQ-LTC can be compared to another’s is to look at the summed scores of their responses on all of the questions. This means that a person who lives close enough to make frequent in-person visitations will have a higher score than those who do not, even if, in all other aspects, they are equally involved. This is likely because they have more methods of involvement available to them on the FIQ-LTC than those who live far away. The FIQ-LTC is not a measure designed to be used to compare one family member’s level of involvement with another’s. Rather, it is a tool for noticing trends in the ways that the family members of older adults residing in long-term care facility remain involved in their lives following admission. Another limitation of the current study is its reliance on Likert scales to measure family involvement. This is potentially problematic, as participants’ level of involvement is determined entirely by their own perception. Different participants may have very different definitions of what they consider doing something “Often.” For example, one person may think that visiting once a week is considered doing so “Often,” while another may think doing so once a month qualifies as such. There is also an overreliance on participants’ perceptions of their own activities. This problem is common with questionnaires that utilize Likert scales. While this tool was believed to best serve the development of this questionnaire, it does have several faults that come with it. Finally, the results of this study cannot be examined to determine if individual items on the FIQ-TEC are as correlated with improved care as is the frequency of visitation. However, this can be addressed in future research that tracks some sort of dependent variable, such as treatment adherence, and looks for significant correlations between that score and the scores on each item included in the FIQ-LTC. This study opens the door to this as they now have a measure that can be utilized in their study. Implications for Future Research This study provides a foundation for future research into family involvement among the residents of long-term care facilities that house older adults. Geriatric researchers may be interested in adapting the FIQ-LTC to include more items or to serve as a more specific measure of an aspect of involvement. One aspect of family involvement that warrants further examination is the methods that family members use to contact their loved ones. Several communication methods were examined in the present study, but this was by no means an exhaustive collection of all communication methods. For example, questions about home and cellular phone usage, video chat, texting, and other methods of communication could be added to the FIQ-LTC to make it a more complete list. It is likely that these methods of communication will become more prevalent as the populations of older adults in long-term care facilities have more and more exposure to them before admission. This could provide more detailed information to both researchers and long-term care facility staff and administration about how family members stay connected with facility residents after admission. Future researchers might also benefit from trimming potentially redundant items from the FIQ-LTC. By doing so they might be able to make the FIQ-LTC a more concise tool measuring family involvement. Future research might focus on creating a measure of family involvement that utilizes a method of responding that allows for more detailed data collection. Although Likert scales worked well for this project, using them came with several drawbacks. As discussed earlier, participants may have a very different definition of what they consider “Rarely” and “Often.” Allowing participants to provide numerical data indicating exactly how often they do something would allow researchers to have a more concrete dataset to analyze. Another option would be to add a “Not applicable” choice to the Likert scale. Some older adults residing in long-term care facilities have experienced cognitive or physical decline that may make an aspect of family involvement impossible. For example, Question 23, “I make sure my family member has the means to easily move around their facility,” does not apply to residents that are bedridden. This might allow for participants to provide an answer that feels more accurately represents their situation. One more study that might prove useful would to conduct an examination into how much family members would like to be involved. Oftentimes the family members of long-term care facilities would like to be more involved than is feasible. Conducting an examination into how family members would like to be involved in the ideal situation might provide long-term care facility administration with ideas on how they can increase involvement. Long-term care facility administration and staff can utilize the information gathered in this study to guide future attempts to increase family involvement with residents. By utilizing the FIQ, they can determine the ways in which family members are involved with their relatives, as well as the way in which they are not. As discussed earlier, (51.5%) of respondents indicated that they never communicated with their loved one over the internet. Given the increased availability of online communication methods, this might be an aspect of family involvement that long-term care facility administrators might be interested in promoting. 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Published: Mar 14, 2019

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