Acquired Brain Injury - Family Education Workshops: Evaluation of Participant Feedback

O’Sullivan, M1,2., Tuohy, I1,2., MacGarry, D1,2., Flynn, C1., Kinsella, K1., Power, S1., Walsh, M1.,

& von Mensenkampff, B1., D ClinPsych.

1. Headway, Kenny Group House, Carrigrohane Road. Co. Cork 2. University College Cork, Co. Cork

Post natal acquired brain injury (ABI) can occur in individuals as a result of trauma, metabolic disturbances, systemic illness, tumours, infections, toxins, and/or medical treatment (Middleton, 2005). Pertinently, ABI has been shown to affect not only the individual with the brain injury and their primary caregiver, but also the functioning of the entire family unit, often as a result of caregiver strain (Gan et al., 2006). Importantly, from a list of possible needs, families of individuals with brain injury have described information and reassurance needs as being of primary concern; research has shown that when a family’s needs are unmet, they feel misunderstood, isolated and unsupported (Kreutzer et al., 1994).

Family education programs have been shown to help individuals understand the nature of their relative’s brain injury and improve their ability to cope (Maitz & Sachs, 1995). Furthermore, group family education can also provide a social environment that may serve as a means of increasing social support. Moreover, research has shown that caregiver social support is the strongest mediator of family functioning and caregiver distress in traumatic brain injury (TBI) (Ergh et al., 2002). Finally, the positive outcomes of family education have in turn been associated with lower levels of depression in the relative with TBI (Leach et al., 1994).

Therefore, ABI services such as Headway utilise family education group programs to complement their intervention measures aimed at family members and friends. Thus, it is important to evaluate the effectiveness of each program, as perceived by participant feedback in order to understand what aspects of the programs are met with participant satisfaction, and where improvements can be made. Indeed, the need to carry out studies that assess the effectiveness of caregiver and family interventions has previously been noted by past research (Boschen et al., 2007). Research Aims and Objectives The aim of the present study is to assess participant evaluation of family education programs at Headway ABI service in order to improve the provision of services for clients, caregivers, and families.

Workshop aims/content •  Table 1 outlines the percentage of agreement among

participants in relation to workshop aims and content. •  The percentage endorsement of usefulness of content

increased over 3 workshops (see figure 1). •  Participants mentioned across workshops in their

additional comments that: •  The information provided was helpful for learning

to cope with the ABI and helped give insight into aspects of ABI that they would not have conceived of before attending the workshop.

•  It was nice to meet others who were experiencing a similar situation to themselves.

•  Workshops allowed for engagement with, acknowledgement of and reflection on one’s own personal feelings, thoughts and emotions since a relative or friends’ ABI.

Session structure •  90% (n=47) of the 52 respondents were happy with

the scheduling of the education sessions. •  Work commitments and timing of the workshops were

cited by some attendees, in their additional comments, as not optimal.

•  The data available for comparing satisfaction between time for discussion between one and a half hour sessions and two and a half hour sessions was limited to responses from seventeen and seven participants in each group respectively.

•  77% (13 participants) and 86% (6 participants) of these small groups surveyed felt that the session length allowed adequate time for discussion.

.

Group structure and dynamic •  All participants (n=32) responded that the number of

participants was sufficient. •  Discussion of issues was generally seen as a positive

feature; 81% (17) of the 21 respondents felt that sufficient discussion of issues was achieved.

Monthly follow-up •  24 out of 25 participants would be willing to attend a

monthly follow-up session. •  The desire to receive more sessions was mentioned by

several participants.

Research Design: A retrospective quantitative investigation was carried out on family education workshops run by Headway using frequency analysis. Participants: 53 participants’ forms were investigated. Participants were family members and friends of clients with brain injury and all participants were 18 years or older. Material and Measures: Feedback forms consisted of between 3-8 questions relating to participants’ experiences of the family psycho-education workshop. Procedure: Feedback forms collected at the end of eight separate workshops dating from November 2010 to May 2014 were gathered for the purpose of analysis. Questions across the different feedback forms were collated and aggregated into four categories; Workshop aims/content, session structure, group structure/dynamic, and willingness to attend follow-up sessions. Participant satisfaction was gauged in relation to their responses to these four categories.

Results indicate that: •  Family education workshops are beneficial in

educating families with regard to ABI and improving managing/ coping skills.

•  Workshops reduce feelings of isolation amongst family members whilst also increasing peer support..

•  90 minute sessions consisting of between 8-12 participants are seen as optimal.

Results inform potential improvements to workshop services including the provision of: •  An evening session to suit carers/family members

who are employed outside the home. •  Increased discussion time at the end of sessions. •  A SMS service that includes monthly updates

pertaining to ABI information such as websites links with ABI related content and upcoming TV documentaries or accessible articles about ABI.

Limitations •  Small sample size. •  Not everyone returned feedback form. •  Non-standardised measure (lack of uniform questions

being asked). •  Secondary data. •  Lack of information on demographics. •  Subjective views being reported. •  Lack of a pre and post measure

Outcomes   Workshops surveyed  

Number of responses  

% Agree  

Peer support achieved  

1   8   100  

Usefulness of course peer support  

3   21   57  

Learning from other families  

3   21   67  

Content useful   6   38   100  

Format suitable for needs  

1   8   100  

Usefulness of ABI information  

3   21   86  

Usefulness of course  

2   12   33  

Managing and coping  

7   45   100  

Question   Workshops

surveyed  

Number of

responses  

% Satisfied with  

Number of days   2   9   67  

Convenience of

session  

7   47   90  

Adequate time

for discussion  

5   32   81  

Session duration   3   23   83  

Table 1. Workshop aims/ content

Table 2. Session structure

0

10

20

30

40

50

60

70

80

90

100

March 2012 (n=9)

May 2012 (n=7)

May 2014 (n=5)

% E

ndor

sem

ent

Figure 1. Percentage of respondents who found course content about brain injury useful

Boschen, K., Gargaro, J., Gan, C., Gerber, G., & Brandys, C. (2007). Family interventions after acquired brain injury and other chronic conditions: A critical appraisal of the quality of the evidence. NeuroRehabilitation, 22(1), 19-41.

Ergh, T. C., Rapport, L. J., Coleman, R. D., & Hanks, R. A. (2002). Predictors of caregiver and family functioning following traumatic brain injury: Social support moderates caregiver distress. The Journal of Head Trauma Rehabilitation, 17(2), 155-174.

Gan, C., Campbell, K. A., Gemeinhardt, M., & McFadden, G. T. (2006). Predictors of family system functioning after brain injury. Brain Injury, 20(6), 587-600.

Kreutzer, J. S., Gervasio, A. H., & Camplair, P. S. (1994). Primary caregivers' psychological status and family functioning after traumatic brain injury. Brain Injury, 8(3), 197-210.

Leach, L. R., Frank, R. G., Bouman, D. E., & Farmer, J. (1994). Family functioning, social support and depression after traumatic brain injury. Brain Injury, 8(7), 599-606.

Maitz, E. A., & Sachs, P. R. (1995). Treating families of individuals with traumatic brain injury from a family systems perspective. The Journal of Head Trauma Rehabilitation, 10(2), 1-11.

Middleton, J. A. (2005). Acquired brain injury. Psychiatry, 4(7), 61-64.