Evaluation of a Bereavement Training Program ... - Wiley Online Library

Journal of Policy and Practice in Intellectual Disabilities Volume 5 Number 1 pp 1–5 March 2008

Evaluation of a Bereavement Training Program for Staff in an Intellectual Disabilities Service Sile Reynolds*, Suzanne Guerin†,¶, John McEvoy‡,¶, and Philip Dodd§,¶,** *Occupational Therapy Department, St. Michaels House, Dublin; †School of Psychology, University College Dublin, Dublin; ‡School of Nursing, Dundalk Institute of Technology, Dundalk; §Department of Psychiatry, St. Michaels House, Dublin; ¶Centre for Disability Studies, School of Psychology, University College Dublin, Dublin; and **School of Medicine, Trinity College, Dublin, Ireland

Abstract The impact of a staff-training program on knowledge and confidence in supporting people with intellectual disabilities (ID) at the time of bereavement was examined. Thirty-three staff members from a Dublin, Ireland-based ID support service participated in the study. Both the training (n = 17) and control (n = 16) groups completed measures of confidence at the beginning and end of a 4-week period around supporting service users through a bereavement survey designed for the study, as well as the Staff Support and Satisfaction Questionnaire. During this interval, the training group completed a two-day training focusing on exploring existing strategies for supporting service users and providing staff with additional skills. Staff members also completed a survey of knowledge at the outset of the study. Over the 4 weeks, there was a significant increase in confidence among the training group, with no comparable changes in the control group. However, as predicted, neither group showed significant changes in general support or job satisfaction. The findings suggest that the training significantly increased staff members’ confidence in their ability to respond to the challenges of support service users during bereavement. The study’s findings also have a number of practical implications, including the need to provide appropriate support for staff. Keywords: bereavement, intellectual disability, job satisfaction, staff competence, staff training

BACKGROUND Over the past two decades, evidence has been collated that provides support for the belief that people with intellectual disabilities (ID) grieve at the time of bereavement (Dodd, Dowling, & Hollins, 2005), and that there is little evidence to suggest that their emotional responses generally differ from those experienced by other people (Stoddart, Burke, & Temple, 2002). However, there is still the potential for significant negative effects in terms of their mental health (Dodd et al., 2005). Despite these findings, it is generally acknowledged there has been a failure by organizations and care institutions to provide appropriate supports to people with ID at the time of bereavement (Murray, McKenzie, & Quigley, 2000). Indeed, Dowling, Hubert, White, and Hollins (2006) go so far as to suggest that the impact of bereavement on people with ID is either not detected or not accepted by their carers, including staff in service settings. The failure to support individuals at this important time has been attributed to two main factors. First, provision of support to a person with ID can prove highly demanding for staff on both a psychological and emotional level (e.g., Murray et al., 2000), and Received March 18, 2007; accepted September 5, 2007 Correspondence: Sile Reynolds, Occupational Therapy Department, St. Michaels House, Ballymun Road, Glasnevin, Dublin 9, Ireland. Tel: +353 1 884 0282; E-mail: [email protected]

second, a lack of relevant knowledge and skills may have limited staff members’ ability to provide direct support (Moddia & Chung, 1995). Indeed, it has been demonstrated that, in some cases, indications of grief among people with ID have been misinterpreted and viewed as aberrant or dysfunctional behavior (Hollins & Esterhuyzen, 1997). This paucity of knowledge can have serious repercussions, and may explain Dowling et al.’s (2006) concern that staff do not recognize the symptoms of grief among people with ID. At the same time, researchers and practitioners have acknowledged the crucial role staff members can play in both education and support provision for people with ID at the time of bereavement (McHale & Carey, 2002). Murray et al. (2000), in a study of 106 staff working with people with ID, reported that participants acknowledged that carers were the most appropriate people to provide supports (such as helping the individual get to the funeral and associated rituals). However, despite this, there are few training programs in bereavement for staff working with people with ID (Cathcart, 1995). The value of training programs to enhance staff knowledge and skills in the field of ID is widely recognized (McKenzie, Sharp, Paxton, & Murray, 2002). In an Irish context, it has been suggested that additional challenges lie not only in staff development and training, but also in the necessity to increase confidence levels among staff supporting adults with ID through the grieving process (Dodd, McEvoy et al., 2005).

© 2008 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing, Inc.

Journal of Policy and Practice in Intellectual Disabilities

Volume 5 Number 1 March 2008

S. Reynolds et al. • Evaluation of a Bereavement Training Program for Staff

AIMS OF THE STUDY This study focused on an application of a two-day bereavement training program for staff designed to impart knowledge and skills that would enable staff to implement practical measures to support people with ID before, during, and following bereavement. The aim of the study was to examine the impact of such a training program on staff members’ confidence in supporting individuals undergoing bereavement. In the training program, the following conceptualizations were used: to grieve is to feel intense sorrow following the loss of a loved one (especially a death); grieving is the process of feeling great sorrow or distress; and bereavement is the grief experienced by loss of a loved one due to death.

METHOD

A self-report questionnaire was designed to assess changes in staff confidence when supporting someone through bereavement, while mirroring the types of issues addressed during the training. Participants were presented with 12 case scenarios and asked to rate their confidence dealing with each scenario using a 12.5 cm visual analogue scale. A higher score was indicative of greater confidence, and average confidence was calculated across the 12 scenarios. Staff also completed a published bereavement questionnaire (Murray et al., 2000) that was used to assess attitudes and knowledge at the outset of the study. The Staff Support and Satisfaction Questionnaire (Harris & Rose, 2002), which provides information on perceptions of support and satisfaction at work, was used to determine if any changes in confidence could be attributed to changes in more general areas. The 3SQ consists of 21 items rated on a 5-point Likert scale, and yields a total score and scores for five subscales: role clarity, coping resources, risk factors, supportive people, and job satisfaction.

Research Design A quasi-experimental, repeated measures design was employed. The independent variables were time (repeated; pretraining and 2-week posttraining) and group (nonrepeated; Training and Control), while the main dependent variable was “average confidence level.” A second dependent variable (general support and job satisfaction) was used to identify whether more general changes might explain any changes in confidence detected.

Participants There were 33 participants in the study, all employed by a community-based ID service in Dublin, Ireland. Participants were 32 females (97%) and one male, ranging in age from 20 to 59 years. The single male participant’s data was included, as this sex ratio is not uncommon in Irish service settings. Staff worked in a variety of settings within the organization (local centers, training centers, workshops, day centers, residential settings), and all had frontline clinical contact. The number of years working in the field of ID ranged between 1 and 24 years, with the largest group (27.3%) working for 5 to 6 years. Seventeen participants made up the training group, while the remaining participants (n = 16) made up the control group.

Materials The training program was developed by the first author and was based on previous research in the area and practical experience. The program consisted of three components, including (1) the exploration of key concepts of loss and bereavement; (2) the experience of bereavement among adults with ID; and (3) discussion and development of guidelines for supporting individuals with ID. The program included theoretical presentations, group activities, and case studies. A central tenet is the recognition and acknowledgement of staff’s current knowledge and skills. 2

Procedure The organization’s training department maintained a record of staff members who had highlighted bereavement training as a concern. These staff were invited to form the training group. The control group was formed by randomly selecting individuals who had expressed an interest in the program, but who had not necessarily raised this issue as a concern. These staff were informed that involvement would not preclude subsequent participation in the training program. Participants were asked to complete the questionnaires at two time points, corresponding to pre- and posttraining program.

RESULTS Analysis Procedures An initial frequency analysis was used to identify staff beliefs about and knowledge of bereavement among people with ID. Frequencies reported are valid percentages (i.e., missing data are excluded). Also, two-way analysis of variance (ANOVA) tests, repeated on the first factor, were used to identify any differences in the dependent variables due to time or group. Alpha levels were set at 0.05 for all analyses, and tests of simple effects were used where significant interactions were identified.

Experience of Supporting Persons with ID During Bereavement Of the participants, 75% (n = 24) had been involved in supporting a person with ID through a bereavement, while 25% (n = 9) of the group had no experience in this area. The number of people with ID staff who had supported their bereavement ranged from two to 42 (c = 2).




TABLE 1 Length of time for normal grieving process (percentage of valid responses)

Response

Up to 1 month 1–6 months 6 months to 1 year 1 to 2 years Over 2 years

Overall Percentage (n)

Training group Percentage (n)

0 6.9% (2) 6.9% (2)

0 11.8% (2) 11.8% (2)

24.1% (7) 62.1% (18)

23.5% (4) 52.9% (9)

Control group Percentage (n)

0 0 0 25% (3) 75% (9)

TABLE 2 Length of grieving process for people with ID

Response




Shorter Same Longer

3.4% (1) 44.8% (13) 51.7% (15)

0 47.1% (8) 52.9% (9)

8.3% (1) 47.1% (5) 50.0% (6)

ID, intellectual disabilities.

TABLE 3 How well do people with ID understand the concept of death

Response

Very well Well enough Little understanding No understanding




16.7% (4) 58.3% (14) 25% (6)

14.3% (2) 64.3% (9) 21.4% (3)

20% (2) 50% (5) 30% (3)

0

0

0

ID, intellectual disabilities.

observed, which meant that it was not possible to examine the main effects of group and time. A test of simple effects was carried out in order to identify the nature of the interaction. A significant difference was found between scores at Time 1 and scores at Time 2 for the training group only (f = 46.87, df = 1, 28, p < 0.05). Examination of the mean scores shows that confidence was higher at Time 2 than at Time 1. Also, while there was no significant difference in confidence between the two groups at Time 1, there was a significant difference between groups at Time 2 (f = 17.67, df = 1, 28, p < 0.05), with the training group showing higher confidence scores. A two-way ANOVA identified no evidence of significant interactions or differences for any of the subscales of the 3SQ. This suggests that the changes in reported confidence could not be attributed to changes in aspects of job satisfaction and support.

Staff Knowledge and Beliefs About the Grieving Process Before Training Participants were asked to indicate the average length of the grieving process among the general population, and by comparison among people with ID (See Tables 1 and 2). The findings indicate that the majority of participants in both groups believed the normal grieving process took over 2 years, and that the length of time required for the grieving process for people with ID to be the same or longer. Participants were then asked their thoughts on how well a person with ID could understand the concept of death. Findings indicate the majority of participants in both the training and control groups believed that people with ID had an adequate understanding of the concept of death (see Table 3), while no one reported that people with ID did not have an understanding of this complex concept.

Statistical Analysis of Group and Time Effects Descriptive statistics for the dependent variables were calculated for each group at each time period (see Table 4). A two-way ANOVA (repeated on the first factor) identified a significant interaction between group and time for confidence scores (f = 16.88, df = 1, 28, p < 0.05). A disordinal interaction was

DISCUSSION The aim of this study was to examine the impact of training on staff confidence in supporting adults with ID during a period of bereavement. In order to understand the context within which the training took place, staff knowledge and attitudes were assessed prior to training. Generally, participants believed that people with ID were capable of understanding the concept of death, were able to grieve following loss, and that the grieving process demanded the same or additional time for resolution for people with ID. These findings suggest that the staff in our study had an understanding of these issues despite a lack of specific training. These findings support previous findings that staff knowledge and attitudes of the grieving process among people with ID is at least good (Murray et al., 2000), while contradicting the suggestion by Dowling et al. (2006) that staff may fail to recognize the impact of a bereavement. In addition, the results of this study support the positive impact of providing specialist training. The results showed that when compared to a control group, only staff who completed the training program showed a significant increase in confidence. Importantly, there was no difference between the groups before training, supporting the comparability of the groups at the outset. In addition, there was no change in general perceptions of 3




TABLE 4 Means and SD for dependent variables Training group Scales

Average confidence Role clarity Coping resources Risk factors Supportive people Job satisfaction

Control group

Time 1

4.57 16.64 17.58 16.94 16.62 19.06

(1.56) (3.85) (3.44) (3.61) (3.15) (3.21)

Time 2

7.67 17.58 17.58 17.17 17.18 19.81

(1.53) (1.80) (2.12) (2.67) (2.13) (3.35)

Time 1

5.27 18.43 18.37 17.06 15.81 20.18

(2.00) (1.96) (2.55) (2.08) (3.91) (4.020

Time 2

5.82 18.00 17.93 17.25 15.93 20.56

(2.37) (1.93) (2.79) (2.14) (3.39) (3.91)

SD, standard deviation.

support and satisfaction in the workplace, suggesting that the change in confidence was not due to wider changes. There are a number of possible explanations for this apparent change in confidence. First, given the focus of the program on the staff’s current knowledge and skills, it is possible that the staff responded to the validation and positive reinforcement of their existing practices. Second, as the program also involved the provision of theoretical knowledge and practical guidelines, it may have provided the staff with additional insights and skills. However, it should be noted that although staff confidence doubled following training, the average score represents a moderate score in terms of the possible scale. Given the role that staff members may have in the support of people with ID at a time of bereavement (McHale & Carey, 2002), it is important to recognize that this role must be supported with appropriate training (James, 1995). With respect to the findings of the study, it is important to consider the possible effects of methodological issues. First, although participants had demonstrated significantly higher confidence levels following training, it was not possible to assess the long-term impact of the program. This would require assessment of demonstrated confidence at a follow-up. Second, there was no evidence that participants are applying the program’s principles in the work setting. Future research may be needed to assess the application of skills, perhaps through the use of diary studies or direct observation. In relation to the scale used to measure confidence, the small sample size did not permit proper assessment of the psychometric properties and validity of the questionnaire. It would be necessary to collect data from a much larger sample to permit an assessment of its reliability and validity. Last, a major methodological issue relates to the construction of the training and control groups. As members of the training group were selected from among individuals who had identified bereavement training as a need, and the members of the control group had simply expressed an interest in the training, this could have resulted in the presence of systematic differences between the groups. Nonetheless, the fact that all participants had a desire to find out about bereavement might have acted to minimize any negative impact on confidence in the findings. In spite of these 4

issues, it is important to stress the benefit of including a control group in the research design, which allowed the researchers to examine changes in confidence when no training has occurred. A comment on the practical implications of the findings. We previously posed that staff can benefit from specialist training in this area, and the outcome of our study supports the idea that even a relatively short-term training program can have a positive impact. However, the provision of training has cost implications, which might limit the wider delivery of such programs. Also, as adults with ID are not a homogeneous group, it is necessary to consider the usefulness of this type of program for staff working with individuals with different needs. Finally, providing training to staff is only one approach to better supporting individuals with ID. It is important for researchers and practitioners alike to consider the role of education for adults with ID themselves, both following a bereavement experience (e.g., Stoddart et al., 2002) and when bereavement is likely, as in the case of a significant illness of a family or someone within their peer group. In conclusion, this study offered support for the positive contributions that training can make for staff supporting adults with ID at the time of bereavement. Training increases staff confidence and it is theorized that this may lead to more effective support for individuals. However, more work is needed in this area as bereavement is a complex issue, and while staff may be in a position to mitigate the impact of this experience, researchers must also consider the impact of providing education directly to adults with intellectual disabilities.

REFERENCES Cathcart, F. (1995). Death and people with learning disabilities: Interventions to support clients and carers. British Journal of Clinical Psychology, 34, 165–175. Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49, 537–543.




Dodd, P., McEvoy, J., Guerin, S., McGovern, E., Smith, E., & Hillery, J. (2005). Attitudes to bereavement and intellectual disabilities in an Irish context. Journal of Applied Research in Intellectual Disabilities, 18, 237–243. Dowling, S., Hubert, J., White, S., & Hollins, S. (2006). Bereaved adults with intellectual disabilities: A combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research, 50, 277–287. Harris, P., & Rose, J. (2002). Measuring staff support in services for people with intellectual disability: the Staff Support and Satisfaction Questionnaire, Version 2. Journal of Intellectual Disability Research, 46, 151–157. Hollins, S., & Esterhuyzen, A. (1997). Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry, 170, 497–501. James, I. (1995). Helping people with a learning disability to cope with bereavement. British Journal of Learning Disabilities, 23, 74–78.

McHale, R., & Carey, S. (2002). An investigation of the effects of bereavement on mental health and challenging behaviour in adults with learning difficulty. British Journal of Learning Disabilities, 30, 113– 117. McKenzie, K., Sharp, K., Paxton, D., & Murray, G. (2002). The impact of training and staff attributions on staff practice in learning disability services. Journal of Learning Disabilities, 6, 239–251. Moddia, B., & Chung, M. C. (1995). Grief reactions and learning disabilities. Nursing Standard, 33, 38–39. Murray, G. C., McKenzie, K., & Quigley, A. (2000). An examination of the knowledge and understanding of health and social care staff about the grieving process in individuals with a learning disability. Journal of Learning Disabilities, 4, 77–90. Stoddart, K. P., Burke, L., & Temple, V. (2002). Outcome evaluation of bereavement for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 28–35.

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