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What Factors Affect Family Involvement in Long Term Care?

A Review of the Literature

JoAnne Fernando

University of Calgary
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! What Factors Affect Family Involvement in Long Term Care?

Introduction

There has been a significant amount of research supporting the benefits of family involvement in

long term care. Family involvement results in more positive outcomes for the long term care

resident, their family, and nursing staff. Benefits to the resident include fewer infections and

hospitalizations (Zimmer, Gruber-Balding, Hebel, Sloane, & Magaziner, 2002), increased

involvement in social activities (Tak, Kedia, Tongumpun, & Hong, 2015), and enhanced meal

time experiences (Henkusens, Keller, Dupuis, & Schindel Martin, 2014). Family members also

benefit from their involvement in the care of an institutionalized loved one. Involved family

members report feelings of greater emotional well-being (Clark, Bass, Looman, McCarthy, &

Eckert, 2004) and greater satisfaction with the quality of care being provided by the facility

(Levy-Storms & Miller-Martinez, 2005). Nursing staff also benefit when their residents families

are involved. Family members provide nursing staff with personalized information about the

patients preferences and specific needs (Utley-Smith et al., 2009) and reduce work loads by

assisting nursing staff with care tasks (Durkin, Shotwell, & Simmons, 2014).

Due to the significant amount of positive outcomes associated with family involvement, long

term care facilities are developing and implementing procedures and polices to enhance family

participation. This literature review seeks to identify the factors that affect family involvement in

long term care. Identifying and examining these factors will allow for the development of

evidence-based policies that enable families to be a valuable resource in their loved ones care.
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Factors Affecting Family Involvement

A review of the literature has revealed several factors that affect family involvement in long term

care settings. These factors play a significant role in the type, amount, and perceived value of

involvement that is experienced by family, resident, and nursing staff.

Pre-placement Stress

Stress felt by family caregivers prior to admission into long term care has a significant impact on

family involvement. A large study of 550 caregivers of longterm care residents found that

residents who presented with troublesome and/or problematic behaviours (aggression,

wandering, repetitive calling out, etc) prior to admission were less likely receive family visits

than those residents who did not exhibit those behaviours (Gaugler, Leitsch, Zarit, & Pearlin,

2000). The authors of this study concluded that this finding was due to the fact that troublesome

behaviour is extremely stressful and often a motivating force behind the institutionalization

decision, it is possible that caregivers wish to avoid these problems following

placement (Gaugler, Leitsch, Zarit, & Pearlin, 2000, p. 354).

Families also experience pre-placement stress that is attributed to the process of transitioning

into a long term care facility. The decision to accept a long term care placement and the process

of moving into a facility is often plagued with feelings of fear, uncertainty, and guilt for family

members (Sussman, & Dupuis, 2012). These feelings persist (to varying degrees) after admission

and affect family involvement in a loved ones care (Levy-Storms & Miller-Martinez, 2005). In

their research, Sussman & Dupuis (2012) found that, families feel significantly more stress when

they are forced to make quick decisions about accepting a longterm care placement, lacked
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pragmatic information about the admission process, and had limited initial communication with

facility staff.

Post-placement Burden & Depression of Caregiver

Though admission into a long term care facility significantly reduces the amount of care that

family members provide, families continue to assist their institutionalized loved ones in a variety

of ways. This post-placement assistance may include monitoring finances, shopping for personal

items, running errands, assisting with showering, assisting with meals, and overseeing care

provided by nursing staff. Researchers found that some of these types of assistance resulted in

more feelings of burden than others (Cohen et., 2004). Specifically, assistance with overseeing

care and monitoring finances led to greater feelings of burden by family members (Cohen et al.,

2004, p. 534). It is likely that the feelings of burden associated with these types of assistance can

cause stress for family members which in turn affects family involvement. A 2004 study found

that feelings of stress and caregiver role overload negatively impacted the number of family

visits in longterm care (Gaugler, Anderson, Zarit, & Pearlin, p. 72). In other words, families who

assisted their loved one with tasks that were perceived as burdensome visited their

institutionalized family member less frequently.

The literature also shows that depression experienced by a family caregiver plays a significant

role in family involvement. For example, one study revealed that family members who report

feelings of depression visit less frequently and have less emotional involvement with their

institutionalized loved one (Gaugler, Leitsch, Zarit, & Pearlin, 2000). In this study, researchers
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hypothesized that depressed family members avoided visiting due to feelings of inadequacy as a

caregiver and a lack of perceived ability to assist their institutionalized loved one in a meaningful

way (Gaugler, Leitsch, Zarit, & Pearlin, 2000, p. 354).

It should also be noted that, family members depression also effected their levels of satisfaction

with the care provided by the long term care facility (Levy-Storms & Miller-Martinez, 2005).

This finding suggests that a possible contributing factor to depressed family members visiting

less frequently is because they are dissatisfied with the facility. Alternatively, dissatisfaction with

the care being provided at a facility may increase family members levels of depression.

Residents Dementia Status & Problematic Behaviours

In their large research study, Cohen et al. (2014), interviewed the family members of 467

residents in 24 care facilities. The focus of this study was to examine how a residents dementia

(or cognitive status) affects family involvement. The results of their research showed that

dementia does not affect the number of visits or the length of visits from family members.

However, a residents level of dementia affects the type of involvement the family has during

their visit. Specifically, Cohen et al. (2014) found that families of residents who were more

cognitively intact focused their visits around social activities (going on outings, writing letters,

etc). While families of residents who had cognitive impairments focused on care tasks

(assistance with meals, assistance with dressing, etc).

In a similar study examining the effects of dementia on family involvement in nursing homes

and assisted living residences, researchers found that families spent significantly more time on
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care-related tasks (compared to social activities) when their loved ones were less cognitively

intact (Port et al., 2005). This study also found that the type of residence (assisted living or

nursing home) did not effect the type of family involvement (Port et al., 2005). Rather, the

primary predictor of the type of involvement a family member has was the dementia status of a

resident.

A residents problematic behaviours while living in the care facility (verbal threats, physical

aggression, calling out, etc) also affect family involvement. One study found that families were

unsettled by these types of behaviours and this led to avoidance around visiting their

institutionalized loved one (Gladstone, Dupuis, & Wexler, 2006). This may indicate that families

feel that they do not have to ability to cope or manage these problematic behaviours. However, a

1999 study on the effectiveness of a Solution-Focused Approach found that family involvement

was an asset in managing problem behaviours (Ingersoll-Dayton, Schroepfer, & Pryce). The

authors of this study (1999) found that family members are able to provide useful insight into

their loved ones behaviours and suggest individualized strategies to manage these behaviours

(Ingersoll-Dayton, Schroepfer, & Pryce, 1999).

Relationship with Nursing Staff

When staff and families have a conflictual relationship, families report higher levels of stress and

depression associated with their caregiver role (Chen, Sabir, Zimmerman, Suitor, & Pillemer,

2007). It is not surprising then that families who have poor relationships with nursing staff visit

less frequently than those with good relationships (Port, 2004). The relationship between family
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members and nursing staff has also been shown to significantly affect how family involvement

manifests itself in longterm care (Bauer, Fetherstonhaugh, Tarzia, & Chenco, 2014). Nursing

staff, in a conflictual relationship with a family perceive the family, as difficulty, demanding,

and/or undermining their work (Bauer, Fetherstonhaugh, Tarzia, & Chenco, 2014, p. 575). This

perception then influences nursing staff interactions with the family and an ineffective feedback

loop is created due to the staffs negative anticipation, which then causes families to respond

based on those negative expectations (Utley-Smith et al., 2009, p.176).

Reversely, positive relationships between nursing staff and families result in higher rates of well-

being amongst family members and more frequent visits (Port, 2004).

Positive relationships between these two groups are marked by being cooperative and trusting in

nature and rely heavily on both families and nursing staff communicating information with each

other (Bauer, Fetherstonhaugh, Tarzia, & Chenco, 2014, p. 578)

Kin Relationship & Gender

The type of kin relationship a family member has to the institutionalized loved one also affects

their involvement with care. Spouses show the greatest involvement as they visited the long term

care facility most frequently and increased the number of visits over time (Gaugler, Pearlin, &

Zarit, 2003). Researchers have suggested that this may be due to the fact that spouses can more

easily relate to the plight of their institutionalized loved one compared to other family members

(Gaugler, Leitsch, Zarit, & Pearlin, 2000). More spousal involvement and visits may also occur
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because spouses had fewer responsibilities or conflictual demands on their time (Gaugler,

Pearlin, & Zarit, 2003, p. 112).

Though children visited less often than spouses, daughters were more involved in care than sons

and daughters experienced higher levels of burden (Chappell, Dujela, & Smith, 2015). This

gender disparity is also found in spouses as wives are more involved in care than husbands

(Chappell, Dujela, & Smith, 2015). Wives also score higher on levels of burden and low self-

esteem compared to husbands (Chappell, Dujela, & Smith, 2015).

Hooyman argues that this gender disparity in caregiving and care involvement is a result of a

underlying power differentials created by gender-based workforce inequities (2014, p. 27). As

women earn less than men and have jobs with less power, they are pressured to cut back or

give up their paid work to take on care tasks for a family member. In order to address the gender

disparity, Hooyman (2014) suggests that caregiving work becomes valued and legitimized by

providing publicly funded compensation for the care work that is being done by the primary

family caregiver (p.32).

Stage of Life

The stage of an institutionalized loved ones life also affects family involvement as family

members are more involved at the end of life (EOL) stage (Gladstone, Dupuis, & Wexler, 2006).

This increase in family involvement at the EOL stage extended to all levels of interactions in the

long term care setting. Families of EOL residents visited more often, were more involved in all

aspects of care (including hands-on care), and increased their communication with nursing staff
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(Williams, Zimmerman, & Williams, 2012). This increase in family involvement during the end

stage of life may be related to the highly valued act of being there for their dying loved one.

According to Munn & Zimmerman (2006), Being there provides a simple definition of a

complex care phenomenon; it appears to represent social supportand it thought to promote a

higher quality of life (p. 53). While families become more involved to support and be there for

their dying loved one, it appears that family members also desire significantly more support

from facility staff during this stage of life. In a focus group of families whose loved ones died in

long term care, Munn et al. (2008) found that family members consistently desired for more

support from staff while their loved ones were palliating.

Long Term Care Facility Variables

The literature also reveals facility-level factors that affect family involvement in long term care

settings. The size of the care facility affected the level of family participation as families were

more involved in smaller facilities than larger ones (Verbeek et al., 2010). Families of residents

in non-profit long term care facilities were more involved than families of residents in private

pay facilities (Gaugler, 2005). Families were also more involved in facilities that were family

oriented than facilities that did not have policies and procedures in place to encourage family

participation (Gaugler, Anderson, & Leach, 2004). Family oriented policies that are identified

in the research include the offering of family-friendly activities (Gaugler, Anderson, & Leach,

2004), the promotion of collaborative care agreements with families (Levy-Storms & Miller-

Martinez, 2005), the encouragement of family involvement during mealtimes (Henkusens,


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Keller, Dupuis, & Schindel Martin, 2014), and the fostering of inviting interactions between

nursing staff and families (Utley-Smith et al., 2009).

Limitations

The majority of the research of family involvement in long term care settings employs cross-

sectionals design methods. Cross-sectional design examines data from one particular time frame

and then compares differences to identify variables. Unfortunately, because this type of research

focuses on one specific time, cross-sectional design fails to shows us how the data may change

over a period of time. Specifically in family involvement research, cross-sectional design does

not show us how family participation in care shifts during the course of a longterm care

residency. In order to better understand the changes that happen in family involvement over time,

research into this area needs to employ more longitudinal studies. By examining variables over

periods of time, longitudinal studies can reveal patterns in family involvement and identify long-

term effects.

Research in family involvement is primarily focused on recording and analyzing quantitative

data. Specifically, the studies examine number of visits, lengths of visits, percentages of

assistance in various activities, and so forth. While these numbers may offer a more objective

view of family involvement, quantitative data fails to capture the complexities and nuances of

family participation. For example, the number of family visits tell us nothing about the level of

social or emotional engagement of those visits. However, the majority of the literature in family

involvement readily accepts the number of visits as an effective measure of family involvement.
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To better understand the complexity of family involvement in long term care, more qualitative

research is needed. Qualitative research that includes families perceptions of involvement, and

observations of family visits, will strengthen our understanding of socio-emotional factors

involved in the family participation.

The vast majority of the participants in family involvement research were Caucasians who

visited their institutionalized loved one at least once a month. This may have been due to the

higher number of Caucasians in long term care or a more willingness to participate in research

studies from Caucasian individuals. However, this lack of racial diversity in the participant pool

may results in findings that have a strong cultural bias. Therefore, great caution is needed when

generalizing the findings of the nature of family involvement to the general public.

As previously indicated, many of the studies required that participants see their loved one at least

once per month in order to qualify for the research study. This requirement leaves an important

segment of families out of the research. Families who may live far away from their

institutionalized loved one or who face other barriers in visiting may still be involved in the care

of the institutionalized relative. Family members may call their loved one frequently, maintain

communication with nursing staff to monitor their loved ones health, or arrange for other

individuals (paid companions) to be with their loved ones. For these reasons, the number of

physical visits from a family member should not disqualify them from studies on family

involvement.
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Recommendations for Policy Development

The extensive and well-documented benefits associated with family involvement in the lives of

long term care residents demands that policies be developed to encourage this type of care

involvement. By examining the factors that affect family involvement in long term care, we can

better create facility-level policies that mitigate factors that impede family involvement and

strengthen factors that encourage it. Through conducting this literature review, the following

recommendations were developed:

Recommendations:

I. Facilities should ensure that their admissions processes are; clearly communicated to

families, allow flexibility, and offer staff/volunteer support on admission day

II. Facilities should identify families assisting with high-burden care tasks and develop

interventions to aide them with these tasks

III. Families of residents who have problematic behaviours should be enlisted to assist with

behaviour management

IV. Facilities should promote collaborative relationships between nursing staff and families that

encourage communication and foster trust

V. Facilities should offer support to family members that are struggling with depression and

burden. Special focus should be given to wives of residents as they are at higher risk and to

families who loved is at the end-of-life stage

VI. Facilities should adopt family-oriented polices that encourage family participation in

activities, meals, and care planning.


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