Family Involvement in Nursing Homes: Are Family Caregivers Getting What They Want?

Abstract

The provision of person-centered care for nursing home residents with dementia suggests the need for family caregiver involvement. In this article, we argue that optimal family involvement differs by family caregiver and therefore depends on the degree to which family caregivers consider their own involvement to be important. In this Canadian study, we compare the importance that 135 family caregivers of residents with dementia place on 20 kinds of involvement with the degree to which they perceive opportunities for involvement. Family Involvement Congruence Scores are calculated in three ways: those for whom involvement is important, those for whom involvement is not important, and an overall congruence score. Congruence scores varied by involvement type. These scores show promise for use in future research on family caregiver involvement and as tools for use by facilities as they endeavor to meet family caregiver expectations for involvement.

Keywords

institutionalization family involvement dementia care

Introduction

The provision of person-centered or individualized care to institutionalized seniors with dementia is widely considered a hallmark of best care practice (Suhonen, Välimäki, & Katajisto, 2000; R. T. Woods, 2001). Family involvement is central to such care and has thus been the subject of a great volume of research. It is well established that families continue to provide care to their loved ones with dementia following admission to a long-term care facility (Aneshensel, Pearlin, Mullan, Zarit, & Whitlach, 1995; Duncan & Morgan, 1994; Ross, Carswell, & Dalziel, 2001). Much of their care, however, becomes indirect rather than direct hands-on care as they endeavor to ensure that quality care is provided by facility staff. This requires the development and maintenance of effective relationships between family and staff (Brown Wilson, 2008; Cohen et al., 2014; Henkusens, Keller, Dupuis, & Schindel Martin, 2014; Maas et al., 1994). Keys to such development are trust in staff (Bauer, Fetherstonhaugh, Tarzia, & Chenco, 2014; Bern-Klug & Forbes-Thompson, 2008), ongoing and meaningful communication (Ben-Natan, 2008), and ongoing monitoring of staff (Bramble, Moyle, & McAllister, 2009).

At the same time, the manner in which families wish to be engaged varies from family to family (Gladstone, Dupuis, & Wexler, 2007; B. Woods, Keady, & Seddon, 2007). Some families, for example, wish to continue to be intensively involved in hands-on care, whereas others wish to transfer such responsibilities to facility staff (Durkin, Shotwell, & Simmons, 2014; Gladstone et al., 2007). Still others wish to disengage entirely (Bauer, 2007; Davies & Nolan, 2006). This interfamily variability speaks to the need for a careful assessment of the differences between families in the importance they place on their own involvement and on different types of involvement. Ideally, family caregivers are offered opportunities for involvement to the same degree that they consider their own involvement important.

The present study seeks to determine the extent to which family caregivers perceive opportunities for involvement to be present in a facility are congruent with their wishes for involvement, as represented by the importance they place on that involvement. It presents an easy-to-use set of items (the Family Involvement Congruence Scores—FICS) that allows both researchers and administrators to assess congruency between the aspects of involvement family caregivers consider important and their perceptions of the availability of these same opportunities in a given facility.

Literature Review

Family and staff have different needs and expectations for the manner and degree to which family caregivers remain involved in care of a senior resident with dementia. For example, Ryan and Scullion (2000), in their qualitative study of family caregivers and facility staff, found that family expectations for their own involvement in care following admission were based on a family values orientation, involving social and emotional care. Staff, on other hand, based their expectations for family involvement on the institutional culture in which they worked based partly on the expectation that staff would deal with task-oriented care and situations where risk was involved. These differing orientations set the stage for considerable uncertainty about the nature of optimal family involvement post admission (Bauer, 2006). We also know facility policies and philosophies (Friedmann, Montgomery, Maiberger, & Smith, 1997) and staff expectations for family involvement influence the manner of and degree to which families are actually involved. For example, Ross and colleagues (2001) recommend that facilities develop policies and programs that maximize the likelihood that family visits are as meaningful and pleasant as possible. It is, in part, the interplay between facility-provided opportunities for family involvement and the importance that families place on their own involvement that results in actual family involvement (Haesler, Bauer, & Nay, 2007).

Furthermore, the need to trust staff is commonly reported as a requirement among families (Ben-Natan, 2008). Trust can be developed through building relationships between staff and families but requires ongoing maintenance. It is characterized by Legault and Ducharme (2009) as a dynamic process that varies between caregivers and over time within each caregiver and is enhanced when families see good care being provided to their family member (Bern-Klug & Forbes-Thompson, 2008). Families who do not trust, or have lost trust, in staff, do not feel good about leaving their relative unattended with care staff (Krause, Grant, & Long, 1999; Legault & Ducharme, 2009). Hertzberg and Ekman (2000) note that families experienced uncertainty and distrust more often when staff turnover was high. It is not surprising, then, that families consider oversight or monitoring of facility care as one of their main responsibilities (Bern-Klug & Forbes-Thompson, 2008; Haesler et al., 2007; Lau, Shyu, Lin, & Yang, 2008).

Effective communication is one of the single most important considerations for fostering staff–family relationships. In-depth interviews with 14 daughters of institutionalized seniors with dementia revealed that integration into the facility setting was facilitated in three main ways (Legault & Ducharme, 2009). First, reciprocal relationships with staff were identified through which information sharing was conducted and led to partnerships in care between daughters and staff. Second, collaboration between daughters and staff allowed for shared responsibility for care of the parent. Third, daughters used “diplomatic” communication, among others, primarily to avoid conflict with staff, because residents were wholly dependent on those same staff at all times. Haesler and colleagues (2007) likewise found that positive communication between family and staff was essential for the development of relationships and subsequent desired outcomes such as opportunities to share information about the resident with staff (e.g., life histories/backgrounds) and, ultimately, best possible care for their relative.

Positive relationships also depend on the communication by staff to family members of the “culture, constraints, and challenges staff face in providing care to all residents” (Bern-Klug & Forbes-Thompson, 2008, p. 50). Lau et al. (2008) report that families who use what they refer to as institutional social penetration achieve a harmonious collaborative relationship with nursing home staff, where institutional social penetration includes three dynamic components: self-disclosure, evaluation of care, and multiple penetration strategies. Without good communication and effective exchange of information about their relative, families tend to see care provided by that facility as less than desirable (Krause et al., 1999).

Other research has explored how to enhance cooperation between staff and families (Hertzberg & Ekman, 2000), provide support for decisional conflict among family caregivers who have placed an individual (Chang, Schneider, & Sessanna, 2011), improve the interaction families have with the resident when they do visit (Gaugler, 2005; van der Ploeg, Camp, Eppingstall, Runci, & O’Connor, 2012), and measure staff attitudes about staff–family relationships (Bauer, Fetherstonhaugh, & Lewis, 2012a, 2012b). However, research to date has not asked families what types of involvement they prefer and whether the facilities provide for them. If facilities provide support for a family council, for example, but families do not consider this important, then good intentions are wasted in the wrong direction rather than facilitating the types of involvement that families consider important.

This article presents a set of items to measure whether there is congruence between the types of involvement that are important to family members and their perceived opportunities for involvement (POI). It does so drawing on data that asked family caregivers themselves how important 20 different types of involvement are to them and, for each type, asks whether they are available to them in the facility in which their family member resides.

Method

This study is based on data collected in three communities in British Columbia, Canada, during the 2006-2010 period for a project designed to determine the effects of individualized care on dementia residents’ quality of life outcomes. Communities were selected to reflect the diversity of regional settings for the province’s nursing homes. Thus, one large and one smaller metropolitan community representing the majority of nursing homes in the province, and one smaller regional city that encompasses rural and smaller urban nursing homes, were selected. The main study (and the present study) included 18 nursing homes, chosen to reflect diversity in terms of size, type of ownership, and percent of residents with dementia. Data were collected from charts, 195 direct care staff interviews, and 149 interviews with and observations of newly admitted residents. Between 4 and 17 residents were recruited from each facility (M = 8.28; SD = 3.68). Recruitment was in the order of admission to each facility. Recruitment was considered complete when the minimum sample size was reached (N = 149), as determined by a power analysis (see Chappell, Kadlec, & Reid, 2014). Inclusion criteria were as follows: (a) newly admitted to a participating nursing home, (b) a primary or secondary diagnosis of moderate to severe dementia with initial dementia designation by directors of nursing followed by confirmation with the Mini-Mental State Examination (MMSE; standard cutoff of 24), (c) absence of a comorbid condition expected to result in rapid deterioration or death, and (d) absence of select primary diagnoses such as bipolar affective disorders.

Data collected from a total of 135 family caregivers of the 149 residents in all 18 facilities are the focus of the present study. In instances where more than 1 family caregiver was identified as being involved with a resident, care staff (the RN in charge on the unit) were asked to identify which family caregiver was most involved. This family caregiver was then asked to participate in the study. Just over a fifth (22.2%) of the facilities were public, 44.4% private, non-profit, and 33.3% private, for-profit. Over three quarters (77.8%) had specialized dementia care units, 61.1% permanently assigned their staff to residents, and most (77.8%) were unionized. Facilities ranged in size from 49 beds to 300, and ranged from 37% of their residents with dementia to 100% (Chappell et al., 2014). The study received approval from the behavioral research ethics boards of the University of Victoria and the University of British Columbia.

Upon admission, the resident’s family caregiver (one per resident) was given a letter describing the study, and subsequently approached to ask their interest in participating. These data were collected at 6 months post admission, once the resident was settled in and the family caregiver had the opportunity to become familiar with the facility. Of the 149 residents in the study, 135 family caregiver interviews were completed (90.6%). Instances of non-completion (9.4%) were due to refusal, inability to contact, or prior death of the resident. The mean age of family caregiver respondents was 60.7 years (SD = 11.9 years) and most were female (63.7%). Almost half were daughters (45.9%), approximately a quarter were sons (25.2%), 9.6% were wives, 7.4% were husbands. All were caregivers to residents who were new admissions to nursing homes who had a primary or secondary diagnosis of moderate to severe dementia, including but not exclusive to Alzheimer’s disease, identified initially by directors of nursing and confirmed with the MMSE (standard cutoff of 24), not having a comorbid condition likely to lead to rapid deterioration or death (such as advanced cancer), and not having select primary diagnoses such as schizophrenia or bipolar affective disorders. It is the family caregivers that are of interest here.

Dimensions of individualized care were developed in a previous study (Chappell, Reid, & Gish, 2007; Reid, Chappell, & Gish, 2007) in which psychometric properties of the tools were established. Of the five measures developed—communication (staff-to-staff and staff-to-resident), knowing the resident, choice and autonomy, and family involvement—the latter instrument is the focus of this article. This measure of family caregiver perceived involvement differs conceptually from measures of family satisfaction in that it seeks to determine the extent to which families think they have been offered opportunities for involvement, and the importance they attach to these opportunities, and not explicitly whether they are satisfied with that involvement.

The Family Involvement Instrument is composed of 20 items; each is relevant to or comprises a type of family involvement (see Table 1). Family caregivers are asked to assess two things in regard to each item: how important each item is and POI in the facility where their relative resides. Exact directions to participants were as follows:

The following statements refer to the different ways that staff members and facility management at long-term care facilities can include family in the care of persons with dementia.

Directions: Read each statement and think about the extent to which it is present in the facility that your family member lives in. Place your responses to these statements in column A [“present in facility”] on the left hand side by using the scale provided. Then consider how important each of these ways of including you in the care of your family member is to you regardless of whether or not the facility provides it. Place your responses to these statements in column B [“Important to me”] on the right hand side by using the scale provided. (The 20 items are shown in Table 1 in their original wording. For original order of items, see Reid and associates, 2007.)

Table 1.

Importance of Types of Involvement, POI, and Difference Between Importance and POI (M Scores).

Type of involvement	Importance of involvement ranked (M)	POI (M)	Difference: Positive, negative, or none	t-test significance
I feel like my family member has been well cared for.	3.96	3.74	Positive	<.001
I trust the staff members at this facility.	3.93	3.84	Positive	<.05
I feel like I am involved in decision making about my family member’s care when he or she cannot make decisions for themselves.	3.77	3.47	Positive	<.001
I am informed about changes in my family member’s care plan.	3.74	3.04	Positive	<.001
I feel comfortable phoning staff members and talking to them about how my family member is doing.	3.71	3.67	None	ns
Staff explained to me the rules and procedures at the facility upon admission.	3.53	3.53	None	ns
Staff have helped me to understand the difficult behaviors that my family member sometimes has.	3.48	2.91	Positive	<.001
I have been asked about my family member’s preferences and values.	3.36	3.04	Positive	<.001
I have been asked about my family member’s personal history.	3.35	3.32	None	ns
I was introduced to the different staff members at the facility where my family member was admitted.	3.34	3.23	None	ns
The facility holds family information meetings.	3.33	3.31	None	ns
Administrators have asked my opinions about the quality of care provided at this facility.	3.24	2.27	Positive	<.001
Staff have taught me how to communicate with my family member as the disease has progressed.	3.16	1.96	Positive	<.001
Staff have helped me to understand how dementia affects my family member.	3.09	2.59	Positive	<.001
Staff have created opportunities for me to meaningfully participate in my family member’s day.	3.04	3.38	Negative	<.001
I have been asked to bring in pictures, letters, and other personal items to teach staff about my family member.	2.94	2.48	Positive	<.001
Staff have helped me to plan for the death of my family member.	2.89	2.07	Positive	<.001
I am able to dine with my family member if I want to.	2.85	3.69	Negative	<.001
The facility has a support group.	2.92	3.11	None	ns
Staff have helped me to plan for the handling of my family member’s estate upon his or her death.	1.68	1.31	Positive	<.001

Note. POI = perceived opportunities for involvement.

The instrument was developed based on current literature and extensive iterative review with health care professionals, seniors, and researchers, and piloted with family caregivers (see Reid et al., 2007, for detailed descriptions and the full instrument). It measures key family involvement opportunities such as trust of staff, receipt of information, and communication. Family caregivers respond to each item for each of the two subscales using a 4-point scale. For the Importance scale, the response categories are (column B—see above): 1 = unimportant, 2 = somewhat important, 3 = quite important, and 4 = extremely important. For the POI subscale, the response categories are (column A—see above): 1 = strongly disagree, 2 = somewhat disagree, 3 = somewhat agree, 4 = strongly agree. (It should be noted that 2 of the items— “I trust the staff members at this facility” and “I feel like my family member has been well cared for” —diverge from the remaining 18 items in that they are not direct measures of types of involvement. They are included here because they are part of the original scale as developed by Reid and associates, 2007.) The instrument was administered to family caregivers of residents of 18 long-term residential care facilities in British Columbia, Canada. Family caregivers completed the instrument, which was handed to them in paper form, in the presence of the research assistant (RA) who answered any questions and collected the completed questionnaire. When requested to do so, RAs recorded responses on behalf of the family caregiver. In this article, interest is directed toward each of the 20 items individually, that is, not in the scale itself (i.e., not in the sum of the items). Decomposing the scale allows for an item-by-item assessment of the degree to which family caregivers are involved in care, thus providing a better opportunity for a more granular analysis of the specific types of involvement, and potential for meaningful clinical response, than would be possible using the sum total of all scale items.

Analysis

To determine a baseline ranking of the importance that family caregivers place on each of the 20 types of involvement, mean scores for each item were calculated. Corresponding mean scores for POI were also calculated. Paired t tests determined the statistical significance of the observed differences. A positive difference between the importance of an item and POI, that is, its importance exceeds POI, indicates that POI did not meet the importance family caregivers placed on it. A negative difference indicates that family caregivers are involved on average to a greater extent than they think is important. A non-significant t test means that POI and the importance family members place on it are congruent. The result is a set of measures that provide basic data on the degree to which POI are commensurate with the importance family caregivers place on these same opportunities. Family caregivers, however, differ in the amount of importance they place on each type of involvement, thus a more refined measure differentiating levels of importance for each POI was computed.

Calculation of Group-Specific FICS—Family Involvement Is Important (FICS-FII) and Family Involvement Is Not Important (FICS-FINI)

The analysis seeks to refine the measurement of congruence between importance and POI based on whether family caregivers think a type of involvement is important or not. Maximizing congruence or getting it “just right” for a family caregiver who does not consider a particular type of family involvement to be important would mean that a POI would be absent for that type of involvement. Congruence among family caregivers who consider involvement to be important would mean just the opposite, that is, they would report the POI (see Figure 1). The premise operating here is that the amount and type of involvement that suits any given family caregiver would ideally be congruent with the importance they place on that type of involvement. We therefore divided the sample into two groups for each of the 20 types of involvement—FII (Family Involvement Is Important) Group: Those who consider a type of involvement to be “quite” or “very important” were classified as considering it important, and FINI (Family Involvement Is Not Important) Group: Those who considered it to be “somewhat important” or “unimportant” were classified as considering it not important.

Figure 1.

Congruence/non-congruence decision matrix for each type of involvement.

For the FII Group, we then calculated the percentage of family caregivers who reported POI and for the FINI Group, we calculated the percentage who did not report POI, for each item. These percentages were calculated separately for all 20 types of involvement for each group: The higher the percentage, the greater the congruence. For example, a score of 100% for either the FII Group (FICS-FII) or the FINI Group (FICS-FINI) indicates exact congruence between importance family caregivers place on a given involvement type and their POI: No family caregivers who consider a type of involvement as unimportant would have reported a POI, and all family caregivers who considered it important would report a POI. At the other end of the spectrum, a score of zero indicates no congruence.

Calculation of a Family Involvement Congruence Total Score (FICS-T)

FICS-FII and FICS-FINI provide a quantitative assessment of the percentages of family caregivers who are congruent in terms of family caregiver POI but separately for those considering the activity important and for those considering it relatively unimportant. A single set of items (FICS-T) that combines both types of information was then calculated by dividing the sum of the numerators of FICS-FII and FICS-FINI by the sum of the corresponding denominators for each involvement type. Theoretically, an individual FICS-T can range from 0% to 100%, with 100% indicating perfect congruence, without regard for whether or not they consider them important.

Results

Table 1 shows mean scores for the importance family caregivers place on their own involvement ranked from highest to lowest (1-4 scale, with 4 being most important) as well as the associated mean scores for POI (1-4 scale with 4 being most POI). Two items emerge as most important for family caregivers: that their family member is well cared for (M = 3.96) and that they trust staff members (M = 3.93). A second tier of involvement items ranked as important include involvement in decision making (M = 3.77) and being informed about changes in family member’s care plan (M = 3.74). Having the facility rules explained (M = 3.53) and being helped to understand difficult resident behaviors (M = 3.48) also rank highly on the Importance scale. Other types of involvement that score over 3.00 are being asked about resident preferences and values (M = 3.36), being asked about resident personal history (M = 3.35), being introduced to staff at admission (M = 3.34), facility holds family information meetings (M = 3.33), being asked about opinions of quality of care in the facility (M = 3.24), being taught to communicate with their relative with dementia (M = 3.16), being helped to understand how dementia affects their family member (M = 3.09), and being offered opportunities to meaningfully participate in their resident’s day (M = 3.04). Lower mean scores (less than 3.00) are observed for being asked to bring in personal items to teach staff about their relative (M = 2.94), receiving help in planning for the death of the resident (M = 2.89), being able to dine with their family member (M = 2.85), facility has a support group (M = 2.92), and receiving estate planning help (M = 1.68).

Family caregivers report POI in 14 of the 20 different types, either to a greater or a lesser degree than they desire. In other words, congruence is not observed for 14 types of involvement. Of the remaining 6 involvement types, congruence between importance and POI is observed. Notably, the 4 types of involvement ranked highest in terms of importance do not show congruence, with family caregiver POI indicating less perceived involvement than their importance scores suggest would be desired. Specifically, knowing that their resident is well cared for, trusting staff members, being involved in decision making when their relative is not capable, and being informed about changes in resident care plans are the most important involvement types for family caregivers, but overall their POI does not match the importance they place on them.

Two other types of involvement among the top 10 on the Importance scale—being helped to understand difficult behaviors of residents and being asked about preferences and values of their resident—are similarly under-experienced by family caregivers. Other types of involvement that are under-experienced by family caregivers are as follows: being asked about their opinions of quality of care in the facility, being taught to communicate with their loved one as the disease progresses, being helped to understand difficult behaviors, being asked to bring in personal items belonging to the resident, being helped with planning for the death of the resident, and being helped with estate planning. Family caregivers are over-provided (POI exceeds importance) with two types of involvement: opportunities to meaningfully participate in resident’s day and being able to dine with a family member.

Table 2 provides ranked FICS-T values (column 2) for each involvement type (column 1) in addition to FICS-FII and FICS-FINI values (columns 3 and 4, respectively). The total congruence score (FICS-T) shows that almost everyone considers five types of involvement to be important with less than 12 (9%) saying they are unimportant: trusting staff (n = 0 say this is unimportant), resident is well cared for (n = 0), comfortable phoning staff (n = 7), involved in decisions (n = 5), and informed about changes in care plans (n = 7). The FICS-T value for these involvement types is therefore determined almost entirely by the FICS-FII value, by those saying it is important. Four of these five types of involvement have congruence scores of 80% or more on FICS-T. The exception is “I am informed about changes in my family member’s care plan,” with a FICS-T score of 71.2%. In other words, almost all family caregivers think this is important, but close to 30% of them indicate that they have not been informed about changes in resident care plans, suggesting room for improvement (see Discussion section).

Table 2.

Congruence Between Importance of and Perceived Opportunity for Involvement (POI): 1. Total Family Involvement Congruence Score (FICS-T), 2. Those for Whom Family Involvement Is Important (FICS-FII), and 3. Those for Whom Family Involvement Is Not Important (FICS-FINI).

Type of involvement	Congruence scores
Type of involvement	1. FICS-T: % congruence (ranked highest to lowest)	2. FICS-FII: % congruence	3. FICS-FINI: % congruence
I trust the staff members at this facility.	99.3	99.3	0
I trust the staff members at this facility.	134/135	134/135	0/0
I feel like my family member has been well cared for.	96.3	96.3	0
I feel like my family member has been well cared for.	130/135	130/135	0/0
I feel comfortable phoning staff members and talking to them about how my family member is doing.	89.5	93.7	14.3
	119/133	118/126	1/7
Staff explained to me the rules and procedures at the facility upon admission.	88.5	93.2	41.7
	115/130	110/118	5/12
I feel like I am involved in decisions about my family member’s care when he or she cannot make decisions for themselves.	85.1	86.9	40.0
	114/134	112/129	2/5
I have been asked about my family member’s personal history.	84.4	87.9	63.2
	114/135	102/116	12/19
Staff have helped me to plan for the handling of my family member’s estate upon his or her death.	82.1	21.4	96.2
	110/134	6/28	104/106
I have been asked about my family member’s preferences and values.	77.6	78.6	70.6
	104/134	92/117	12/17
I was introduced to the different staff members at the facility where my family member was admitted.	77.4	84.1	50.0
	103/133	90/107	13/26
The facility holds family information meetings.	77.1	89.8	56.5
The facility holds family information meetings.	101/121	88/98	13/23
Staff have created opportunities for me to meaningfully participate in my family member’s day.	77.0	95.8	30.8
	104/135	92/96	12/39
Staff have helped me to understand the difficult behaviors that my family member sometimes has.	75.6	75.0	80.0
	96/127	84/112	12/15
I am informed about changes in my family member’s care plan.	71.2	72.0	57.1
	94/132	90/125	4/7
The facility has a support group.	71.0	84.1	50.0
The facility has a support group.	71/99	53/63	18/36
I am able to dine with my family member if I want to.	68.4	100.0	18.5
I am able to dine with my family member if I want to.	91/133	81/81	10/52
Staff have helped me to understand how dementia affects my family member.	66.9	63.1	80.0
	89/133	65/103	24/30
I have been asked to bring in pictures, letters, and other personal items to teach staff about my family member.	64.4	59.3	73.9
	85/132	51/86	34/46
Staff have helped me to plan for the death of my family member.	64.2	50.0	91.5
	86/134	43/86	43/48
Administrators have asked my opinions about the quality of care provided at this facility.	57.8	50.5	85.7
	78/135	54/107	24/28
Staff have taught me how to communicate with my family member as the disease has progressed.	50.8	39.8	93.9
	63/124	37/93	26/31

For another seven types of involvement, the FII Group family caregivers are more likely than FINI Group family caregivers to be getting what they want. These types of involvement fall in the middle of the overall FICS-T rankings. For example, the item “Staff have created opportunities for me to meaningfully participate in my family member’s day” is important for most family caregivers, 95.2% of whom also indicate a POI (high congruence). On the contrary, of the family caregivers for whom this is unimportant, only 30.8% report not having a POI (low congruence).

For six types of family involvement, five of which receive the lowest FICS-T values, FINI Group family caregivers are more likely than FII Group family caregivers to experience congruence. For example, for the involvement type “Staff have helped me to plan for the death of my family member,” 91.5% of FINI Group family caregivers report not having a POI, while 50% of FII Group family caregivers report a POI. For the five involvement types with the lowest congruence scores on the FICS-T, it is the family caregivers who do not consider these types of involvement to be important who are getting what they want, while those family caregivers who consider them important are much less likely to be doing so. The sixth type of involvement for which greater percentages of FINI Group family caregivers than FII Group family caregivers are getting what they want is ranked seventh, relatively high in congruence, on the FICS-T: Staff have helped me to plan for the handling of my family member’s estate upon his or her death. For this item a large majority of family caregivers consider this unimportant and almost all of them (96.2%—high congruence) did not POI. Of the family caregivers who consider this important, only 21.4% (low congruence) report POI. The resultant FICS-T value (ranked 7th of 20) is thus weighted heavily toward FINI Group family caregivers’ experiences and desires.

Turning to FICS-T, over 80% of family caregivers were experiencing congruence for seven types of involvement:

I trust the staff members at this facility.

I feel like my family member has been well cared for.

I feel comfortable phoning staff members and talking to them about how my family member is doing.

Staff explained to me the rules and procedures at the facility upon admission.

I feel like I am involved in decisions about my family member’s care when he or she cannot make decisions for themselves.

I have been asked about my family member’s personal history.

Staff have helped me to plan for the handling of my family member’s estate upon his or her death.

Between 70% and 80% of family caregivers were getting what they want for a further seven types of involvement:

I have been asked about my family member’s preferences and values.

I was introduced to the different staff members at the facility where my family member was admitted.

The facility holds family information meetings.

Staff have created opportunities for me to meaningfully participate in my family member’s day.

Staff have helped me to understand the difficult behaviors that my family member sometimes has.

I am informed about changes in my family member’s care plan.

The facility has a support group.

Fewer than 70% of family caregivers were getting what they want for six types of involvement:

I am able to dine with my family member if I want to.

Staff have helped me to understand how dementia affects my family member.

I have been asked to bring in pictures, letters, and other personal items to teach staff about my family member.

Staff have helped me to plan for the death of my family member.

Administrators have asked my opinions about the quality of care provided at this facility.

Staff have taught me how to communicate with my family member as the disease has progressed.

Discussion

To determine whether family caregivers are involved in care for institutionalized residents with dementia in ways that are important to them, we drew on interviews with 135 family caregivers of residents with dementia in long-term care facilities in three communities in British Columbia, Canada. We employed the Family Involvement Scale developed by Reid and colleagues (2007) to assess how important family caregivers considered 20 types of family involvement as well as POI. Dividing the family caregivers into two groups—those for whom a type of involvement is important and those for whom it is not important—we calculated congruence between the importance family caregivers placed on each of the 20 types of involvement and POI. Three FICS were developed for each type of involvement: FICS-FII computes a congruence score among family caregivers who consider involvement important, FICS-FINI computes a congruence score among family caregivers who consider involvement unimportant, and FICS-T computes overall congruence by combining FICS-FII and FICS-FINI values to determine the extent to which family caregivers are getting what they want, irrespective of importance.

Overall, based on FICS-T scores, facilities are providing family caregivers with some key opportunities for involvement. Probably most important among these is the high level of congruence between the importance family caregivers place on trust and knowing that their relative is well cared for and their POI. These types of involvement, while not direct measures, are cornerstones of quality care from the perspective of the family. Their emergence as highly congruent in terms of importance and POI is reassuring and important. Similarly, most family caregivers feel comfortable phoning staff, and a large majority agree that they are involved in decision making. As a package, these four types of involvement indicate that communication, a key ingredient for meaningful family involvement (Bern-Klug & Forbes-Thompson, 2008), is being facilitated by facility staff. It is also important to note that all four of these areas are identified as important by a large majority of family caregivers. Clearly, according to reports from family caregivers, facilities are managing to provide opportunities that accord with some of the most important family values regarding care for their institutionalized relative with dementia.

At the other end of the spectrum (less than 70% total congruence), POI is not congruent with what family caregivers consider important. These types of involvement range from wanting to understand how dementia affects their family member to bringing in personal items to receiving help with planning for the death of their relative to being asked by administrators about their opinions of the quality of care. When decomposed into congruence scores for family caregivers who see these types of involvement as important and those who do not, an interesting pattern emerges: family caregivers who do not identify these involvement types as important “get what they want.” The opposite is true for family caregivers who see these as important involvement types. This finding highlights the need to determine individual family caregiver expectations for their own involvement. Offering family caregivers a choice of how they prefer to be involved based on what they identify as important may be an effective way of not only improving resident care and family caregiver satisfaction, but of optimizing resource use. This may also avoid potentially undesirable outcomes in terms of family caregiver satisfaction by ensuring that the roles important for family caregivers are available.

A third congruence classification of involvement items is located between the two identified above (i.e., 70%-80% congruence on the FICS-T). This group is also composed of a range of involvement types from being introduced to staff members to facility family information meetings to being informed about changes in a resident’s care plan. Decomposing FICS-T scores in FICS-FII and FICS-FINI scores shows that four of seven of these types of involvement are composed of activities for which family caregivers identifying them as important often “get what they want.” From a resource use perspective, each facility must decide how many participants make it a worthwhile offering or whether efforts might more profitably be directed elsewhere. At the same time, two of these seven types of involvement—being informed about changes in resident care plans and providing help with understanding difficult behaviors—show similar congruence levels across the two types of family caregivers. That is, between 20% and 30% of all family caregivers are not getting what they want. This may reflect the need for a more careful assessment of what each family caregiver prefers prior to or during the stay of their resident in the facility. Thus, baseline and subsequent assessments of those types of involvement that family caregivers value, whether conducted formally or informally, may be important to family caregivers, residents, and staff.

The relatively large percentage of family caregivers who are not being informed about changes in resident care plans, regardless of the importance they place on it, is cause for concern. American nursing homes are required by federal law to inform family caregivers when a resident’s status or care plan changes. In Canada, nursing homes are regulated at the provincial level. British Columbia currently does not require that family caregivers be informed of a change in care plans. The results of this study show that approximately 70% of participating nursing homes do in fact inform family caregivers of such changes regardless of whether they consider it to be important or not. However, considering that best practices for nursing home dementia care recognize that family involvement is essential in fostering optimal resident outcomes, an increase in the percentage of family caregivers notified of changes may signal an improvement in care.

The FICS scores may be of use at both the individual and collective levels for the measurement of congruence between family caregiver wishes and POI. At the individual level, a family caregiver might be administered the family involvement scale prior to admission of their relative both to determine what they see as important and to inform them of the possibilities for family caregiver involvement. To the extent possible within the mandate of the facility and available resources, this should allow for an effective tailoring of family involvement opportunities. To the extent that family caregiver assessments may change over time, a re-administration of the scale can provide new directions for family caregiver involvement. Such data may be a useful inclusion in a resident’s chart file. At minimum, completion of the family involvement scale could be used as a mechanism to kick start discussions with family caregivers about the manner in which they wish to be involved and how that might best be accommodated within the means of the facility.

At the collective level—unit, floor, facility, organization—FICS scores could be used as part of a monitoring system of family caregiver involvement. For example, congruence scores could be collected at pre-admission over a period of time and/or a number of new admissions to understand better what family caregivers view as important. Adjustments at the facility level may be based at least partly on such information. Whether the knowledge obtained in this manner shows that a facility is providing involvement opportunities that accord with the wishes of family caregivers or otherwise, the information could inform ongoing facility level planning. Likewise, when changes in initiatives to involve family caregivers are introduced, baseline and subsequent measurements of congruence may be valuable for planning purposes. Similar measurements and parallel comparisons might be made for the same purposes at the organizational level (e.g., for multiple facilities).

This study has several limitations that should be noted. This study was designed to gather family involvement data from only one caregiver per resident and at one point in time. Some residents will have more than one primary family caregiver and caregivers may change over time. The question of representativeness of the views of that single caregiver of the family itself remains uncertain. Likewise, family caregiver(s) most involved in the admission process may not be the same one(s) most involved as caregiver(s) at the point of data collection several months later. The extent to which such changes take place over time should be considered in future research, as POI and the importance they attach to that involvement may vary by caregiver and over time as different caregivers move in and out of the picture. All these concerns have implications for the viability or likelihood of a facility agreeing to facilitate the involvement request of any given family caregiver when the request contravenes facility policy. When two family caregivers to the same resident express differing ideas about how they would like to be involved, the one whose request aligns with facility policy is more likely to get their wish. Future research that assesses the extent to which the family member involved with the nursing home reflects the views of other family members would assist in understanding how results such as those presented here can be generalized as being the views of “the family.” An additional limitation is that family caregivers were asked about their POI for the first 6 months following admission. This period of time may not be representative of perceptions of family involvement at later stages during the resident’s stay. For example, the first 6 months that a resident is in a facility may be a time when family caregivers and facilities are most attentive to one another. We also acknowledge that while we attempted to identify and recruit a sample of facilities that was reasonably representative of facilities in the province, this was not a random sample. For example, remote facilities were not included due to cost considerations.

The data presented here point to the importance of better understanding what family caregivers value in terms of their continuing role in the lives of their family members who have been institutionalized. The congruence scores also provide a method for researchers to easily examine family caregiver involvement in more depth while taking into account the perspectives of the family caregivers themselves. The findings reported here confirm the importance of facility communications with family caregivers (Bramble et al., 2009) and of the high value they place on trusting staff to provide high-quality care to the resident (Brown Wilson, 2008). However, they also point to the diversity of views held by different family caregivers; although there are core types of involvement that almost all family caregivers want, in many areas, one size does not fit all. The FICS-FII, FICS-FINI, and FICS-T provide an easy-to-deliver instrument for additional research. Future research needs to pursue how family caregivers can best participate in residents’ care while being supportive of the constraints within the institutional environment. Research can also assist nursing homes in how best to evolve to meet the needs of both their residents and their family caregivers.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Data for this study were funded with a grant from the Canadian Institutes of Health Research (MOP 74606).

Author Biographies

R. Colin Reid, PhD, is an assistant professor in the School of Health and Exercise Sciences at the University of British Columbia’s Okanagan campus. His research is focused on care for institutionalized seniors with dementia, with an emphasis on family involvement and transitions in care.

Neena L. Chappell, PhD, FRSC, FCAHS, is Canada research chair in social gerontology and professor of sociology at the Centre on Aging, University of Victoria. She was founding director of the Centre on Aging at the University of Manitoba (1982-1992) and first director of the Centre on Aging at the University of Victoria (1992-2002), developing both into world-class research facilities while ensuring accessibility to the community. For over 35 years, she has been a leader in gerontological research, focusing on issues around aging (caregiving, social support, dementia care, health services, healthy aging, Chinese, and China) and health and social policy. Her research can be characterized as partnerships with other researchers in the social sciences and with non-researchers in government and community agencies.

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