Abstract

The study examined formal and informal supports for families, staff, and residents of long-term care homes (LTCH) associated with the bereavement of residents. The development of the survey used to obtain this information was in collaboration with staff members of LTCH in northern Ontario. Data were from a pool of 52 long-term care homes with an overall response rate of 64% of 140 possible respondents. The findings showed a range of formal and informal resources available to the families, staff, and residents. The most frequent resources were (1) pastoral care for families, (2) pastoral care and volunteer visits for residents, and (3) literature for staff. The study identified strengths and barriers regarding the availability and use of resources around the time of bereavement.

Introduction

Death and bereavement occur at a higher rate in LTCH than in the general population. The death rate of Canada's general population was 7.1 per 100,000 people in 2001: in LTCH the rate is much higher, with annual estimates ranging from onethird1 to two-thirds2 of all residents. Bereavement has an impact on physical3-5 and mental functioning; 6-8 the death of a loved one may precipitate a physical or psychological illness, or it may exacerbate any pre-existing difficulties. Bereavement is a risk factor for depression9-10 and increased mortality rates11 particularly within the first year of loss.

Most of the literature on bereavement and grief has focused on loss as experienced by a spouse, parent, or child. Cultural norms tend to specify who can grieve, for whom, and for how long. ‘Disenfranchised grief' may occur when the relationship between the deceased and the bereaved is unacknowledged, when the loss is thought insignificant, or when the griever is not recognized as experiencing grief. 12 Residents and staff of LTCH frequently develop meaningful relationships, and recognition of the need of both groups to grieve for deceased residents is often unacknowledged. Furthermore, several risk factors for poor bereavement outcome may be particularly salient to residents of LTCH, including multiple losses, low social support,3 and poor pre-existing physical and mental health.13

Traditionally, resources for bereaved individuals include individual and family counselling, support groups, pastoral care, and brochures and literature about grief. Other forms of support to the bereaved include sympathy cards, telephone calls, attendance at funeral services, and annual group memorials. Although these resources are frequently available for family members, they are less accessible to other residents and LTCH staff. A survey of Californian hospices14 found the most common forms of support were brochures about the grieving process, telephone calls, and scheduled mailings. The next most common form of support was pastoral visits. Larger hospices were more likely to provide workshops and support groups than smaller hospices. A similar study in Michigan LTCH15 found that approximately half of the homes co-ordinated staff representation at resident funerals; however, 99% of facilities did not provide literature about grief, and 76% were unable to offer a counselling or psychiatric referral when deemed appropriate.

LTCH provide opportunities for relationships to develop between fellow residents as well as with staff. However, due to their nature, these facilities also form a high-death environment for both the residents who live there and the staff who work there. Because all the previous research examining death in LTCH was outside of Canada, a comparable Canadian study is necessary. The present study attempted to examine the resources available to residents, staff, and family members by LTCH in northern Ontario. This region of Ontario includes LTCH in urban and rural communities; it is sufficiently circumscribed to enable a census- level survey of all the LTCH within its boundary.

Methods

Participants

Because the nature and extent of contact that LTCH staff have with residents and their families varies with the type of position held by the staff member, the study sought participation from three groups of employees: administrators, directors of nursing (DON's), and front-line staff. The latter include staff that provide direct care to residents but do not occupy administrative or managerial positions. In LTCH with 60 or fewer beds within the region, the administrator also fulfills the DON position; consequently, participation in such homes included only two types of employee (administrator and front-line staff).

Measures

The development of the survey to obtain information on current bereavement practices in LTCH included key informant interviews and focus groups. To validate the survey content, the key informants and focus group participants examined copies of the draft survey, provided feedback to the researchers, who modified the survey contents accordingly.

The survey questions included statistical information from the LTCH, such as the number of beds and number of residents who died in 2003 (i.e., the year preceding the survey). The survey questions also asked about the formal and informal resources available and/or used by residents, staff, and families post-bereavement using dichotomous (‘yes/no') or 5-point Likert-scaled items (‘almost never' to ‘almost always'). The survey provided space for participants to indicate barriers to service and what supports and/or services they would like to see implemented in their LTCH.

Procedure

The sampling frame for the study was all of the LTCH identified within the northern Ontario region by the Ontario Ministry of Health and Long-Term Care. There are 53 such facilities that range in geography from as far south as Gravenhurst, as far north as Longlac, as far east as Mattawa, and as far west as Rainy River. Because one administrator was unavailable within the timeframe of this study, there were 52 LTCH identified as potential participants. Initial contact with the administrators was by telephone to discuss the study and request that they complete the survey. Delivery of an informed consent form and questionnaire was by mail, fax, or email. The administrators returned completed surveys from themselves, the DON (if the facility had 60 or more beds), and one front-line staff member in their facility by mail, fax, or e-mail. There were three $100 draws to encourage participants to return the surveys in a timely manner.

Results

There were returns of one or more surveys from 81% of the 52 LTCH included in the sample. The overall return rate was 89 completed out of a possible 140 surveys, giving an overall response rate of 64%. The response rates were similar for administrators (63.%), DON's (65%), and front-line staff (63%). There were no significant differences among the three types of respondents or among different sizes of facility with respect to the questions on bereavement practices. These findings suggest that the respondents had comparable perceptions about bereavement practices in their LTCH regardless of their employment position within that home. Consequently, the findings reported on bereavement practices include percentages of the 41 (i.e., 81% of 52) homes for which respondents indicated that a particular practice was available or unavailable, or the mean and standard deviation scores in Likert-scaled items.

Facility Demographics

Participating facilities ranged in size from under 20 to more than 200 beds. On average, 23.5% of each LTCH's residents died in 2003; 19% died in the LTCH, and 5% died at another location such as in hospital. Formal Bereavement Resources All participants were asked to indicate the formal bereavement resources (e.g. literature about grief, counselling, sympathy cards) that were available for staff, residents, and families. Table 1 displays the percentage of LTCH offering the listed service to the bereaved following the death of a resident. The most common forms of support to families were pastoral care, brochures/ literature about grief, and sympathy cards. The most common forms of support to staff were brochures/literature about grief, pastoral care, and attendance at annual group memorial services. For bereaved residents, the most common forms of support were pastoral care, volunteer visits, and attendance at annual group memorial services.

Informal Bereavement Resources

All participants were asked to indicate which informal resources (e.g. coping assistance for staff or residents; spending time with the dying resident) they had observed staff and residents using to cope with the death of a resident. Table 2 displays the frequencies with which staff and residents were observed to use informal bereavement resources. Staff most frequently spent time with the dying resident before death occurred and helped bereaved family members cope with the loss. Residents frequently attended individual memorial services/funerals and annual group memorials; however, 61% of respondents indicated that resources such as time off work and paid leave were not in place to aid staff who wished to attend the funeral of a deceased resident. Seventy percent of respondents indicated that resources such as transportation were in place to aid residents who wished to attend the funeral of a deceased resident.

Barriers to Bereavement Resources

Open-ended questions asked participants to indicate the barriers to providing formal bereavement resources to staff and residents, and to list the supports and/or services they would like to have in their facility. Several themes emerged from this qualitative data. Lack of resources and/or funding was identified as the main barrier to providing formal bereavement services to staff and residents. Time and staffing constraints were identified as barriers to staff bereavement services, while staffing constraints, lack of trained staff to administer bereavement services, and attitudes were identified as the frequent barriers to resident bereavement services.

Discussion

Staff and residents of LTC facilities encounter death much more frequently than the general population; in the present sample, the death rate was 331 times higher than in the general population. Staff are immersed in both a personal and professional high-death environment, and this same environment is part of the culture in which residents must live. There is little literature to inform us of the impact of this environment on people, although we know that bereavement has a multi-faceted impact on those who experience it. From a strictly logistical viewpoint, previous literature has suggested that bereavement affects staff's ability to perform their duties.16 It is therefore imperative that LTC facilities provide staff and residents with resources to help them cope with bereavement.

This study found that a range of formal resources were in place to assist families, staff, and residents with bereavement. Participants indicated that a wide range of resources were available at their facilities, ranging from brochures and literature about grief to formal counselling. In fact, these resources rivalled the supports reported by American hospices,14 which are centres specifically designed to provide end-of-life care for the dying and bereaved. The majority of participants indicated that hospice involvement was available for residents, which may explain these findings. While these results indicated that facilities offered a variety of formal bereavement supports, we did not ask how frequently these services were utilized; future research could clarify this point.

Adjustment to bereavement loss was also facilitated through informal processes. Previous literature indicated that staff sometimes needed to view deceased residents and attend the funeral to make their farewells,17 and our findings complemented those in the literature. Staff frequently spent time with the dying resident before death occurred and helped each other cope with the death. Contrary to previous findings17 staff hardly ever met outside of work time to reminisce and talk about the deceased resident. Residents provided each other with support by helping each other to cope and attending individual memorials/ funeral services. The utilization of these informal resources provides valuable information as to how staff and residents of LTC facilities cope with the frequent experience of death.

Prevention strategies for people at high risk of developing bereavement complications may be particularly pertinent to long-term care facilities. Education about the typical bereavement experience has been proposed as a prevention method,18 and 51% of our respondents indicated that workshops and/ or training courses in how to handle death, dying, and bereavement were available for staff to take every 6 to 12 months. Additionally, the majority of participants indicated that brochures and/or literature about grief were available in their LTCH. These supports are important and necessary to increase awareness of bereavement issues for families, staff, and residents.

Finally, our qualitative data regarding barriers to bereavement services can be used to target areas for improvement. As expected, most identified barriers could be linked to funding limitations (e.g. lack of staff, lack of training) and the solution of providing more funding for bereavement services is at once simple and unlikely. Less costly alternatives such as providing staff and residents with literature about the bereavement process and increasing volunteer hours when a death has occurred may provide a partial solution. When discussing funding solutions, the importance of informal bereavement resources must not be understated. A most frequent form of support was through interaction with other bereaved staff and residents; LTC administration and management can continue to promote an atmosphere of support and caring among employees and residents.

Limitations

The findings of the present study provide information on how death and bereavement are managed in LTCH. However, the findings need to be tempered by the limitations of the survey itself. The survey was developed to collect information pertinent to the present study with its psychometric properties limited to content validity. Because key informants and focus group participants examined the questionnaire, its content appears appropriate.

As in all survey research, a potential source of bias may have come from the respondents themselves; it is likely that participants who returned the survey questions may have had a preexisting interest in bereavement issues. The survey results thus may not be representative of the entire population. Furthermore, all respondents were from the northern Ontairo region and the results may not generalize to other LTCH in Ontario or Canada. This study was also limited by the secondary observations that were collected. Participants were asked to indicate how often they observed the residents engaging in various activities. Future research would benefit from directly asking the residents how they cope with bereavement.

Conclusions

Residents and staff of LTC facilities are exposed to a high death environment. Although a variety of formal and informal resources are available to facilitate adjustment after bereavement, more funding is needed to increase the quantity and quality of these services. The literature would benefit from further investigation of bereavement in LTCH.