southeastern ontario regional stroke support...

November 2013 Evaluation Regional Stroke Support Groups

SOUTHEASTERN ONTARIO REGIONAL STROKE SUPPORT GROUPS

NOVEMBER 2013 EVALUATION

SUBMITTED TO SOUTH EAST LHIN


NOVEMBER 2013 EVALUATION SOUTHEASTERN ONTARIO REGIONAL STROKE SUPPORT GROUPS

Background In late fall of 2013, LHIN funding was received in support of three regional Stroke Survivor and Caregiver Support groups:

Community & Primary Health Care in Perth/Smiths Falls and Brockville (for LL&G Counties)

Community Care for South Hastings (for H&PE Counties) Since receipt of this funding:

Two facilitators have been hired and oriented. Orientation has included supportive communication training for those with communication deficits due to aphasia through the Toronto Aphasia Institute, funded through the Stroke Network of SEO.

Venues have been identified for the three groups and support groups serving both stroke survivors and their informal caregivers are being held in each of the three geographic areas.

A collaborative regional model which includes the three facilitators as well as representation from the Stroke Network of SEO has been initiated and is supported through regular teleconferencing and in-person meetings. Facilitators also particpate in the quarterly meetings of the Community Reintegration Leadership Team, a sub-committee of the Regional Stroke Steering Committee.

Health and social support partners, as well as the community at large have been informed of the groups through brochures, flyers, word-of-mouth and media releases/articles.

Two Living with Stroke© programs have been delivered and a third program is currently in the planning stages.

Training sessions to expand the Peer Visiting Volunteer program are being scheduled for early 2014.

The Kingston Stroke Survivor and Caregiver Support Groups have been on a hiatus since the spring of 2013 due to the transition of the MSAA and LHIN-funded community support services from the Kingston Seniors. In late October the VON (Kingston) received one-time LHIN funding to assume the host role for these groups. Since receipt of the funding letter (i.e. November 1 – November 30, 2013):

The previous social worker facilitator was hired by VON Canada – Greater Kingston Site, and started

work on November 11, 2013.

The facilitator has contacted 43 former group participants (28 survivors and 15 caregivers) who gave

their consent to be contacted when the groups resumed.

A Couples Group meeting was held with four couples in attendance.

Space has been secured in the community for the Stroke Survivor, Care Partner and Couples Groups’

monthly meetings.

Three new referrals to the groups have been received, with service providers indicating more to come.

All of these referrals were from community service providers (CSS, CCAC physiotherapist)


As well, the seminal evaluation work of the Kingston group has been presented at various forums including:

Regional Stroke Steering Committee (Kingston, May 2013)

Care of the Frail Elderly: Navigating the Maze (Kingston, June 2013)

Canadian Stroke Congress (Montreal, October 2013)

Stroke Collaborative (Toronto, October 2013) Future invitations to present will include the findings of the LLG and HPE groups as well including:

Regional Stroke Symposium (Kingston, December 2013)

Ontario Stroke Rounds (May 2014) Best practice research supports the benefits of support groups from both an individual perspective and for the broader health system. “When the psychosocial needs of patients and their caregivers are regularly addressed through social support, improved outcomes are observed, including reduced caregiver burden, reduced incidence of anxiety, reduced emotionalism and depression, reduced hospital readmissions and failed discharges, and facilitated reintegration of the patient in family and social roles.” (Anderson, 1992; Duncan et al, 2005). The value of the stroke survivor and caregiver groups continues to be confirmed through quantitative findings such as those contained in this report, but perhaps more importantly through the stories of the participants. As stroke survivor in one of the current support groups so eloquently stated, “I had my stroke in 1982. So my life has changed. This group was not part of [the] beginning of my journey but today it has helped me to help others.”

“Good therapy to get out and meet other people, get on with your life.” Survivor

“I really enjoy the group and what I gain from their life experiences.” Caregiver

Note that as the Kingston Stroke Survivor & Caregiver Support Groups are only now being reinitiated, new data has not yet been collected for those participants. Reference is made throughout this report to the previous findings reported to the SE LHIN in January 2013 (Executive Summary in Appendix A). Evaluation tools used to assess the impacts of the Kingston Stroke Support Groups werealso used by LLG and Hpe and may be found appended to the Kingston report on the Stroke Network of Southeastern Ontario’s webiste at http://strokenetworkseo.ca under (new) Regional Projects.

http://strokenetworkseo.ca/


S.U.P.P.O.R.T. Stroke Understood: a Peer Program Optimizing Recovery Together

“I think every time I have got involved with the stroke group you learn new things. Every person

participates and makes people feel better.” Stroke Survivor SERVICES PROVIDED IN LLG AND HPE

Planning, delivery, and evaluation of 7 support groups (Perth/Smiths Falls Stroke Survivors & Caregivers Support Group, Brockville Stroke Survivors & Caregivers Support Group, Belleville Stroke Survivors Group, Belleville Couples Group, Belleville Caregivers Group)

Identification of educational needs of stroke survivors and caregivers with subsequent provision of educational information to the groups verbally, written, and/or via guest speakers.

Management of referrals for potential group participants, completion of Stroke Services Evaluation tool, administering the stroke survivor Stroke Impact Scale and Montgomery-Borgatta Caregiver Burden scale and support for attendance to initial group meeting.

Outreach to and networking with community based partners

Transportation arrangements - if required

Referral to community resources, as required, with consent

Monitoring of individual group participants as required through phone calls and email

System navigation including the identification of appropriate community resources, how to access their system, and initiating a referral.

Case management when the social and community resources are either non-existent or limited and the participant requires assistance, information and/or advocacy to meet their needs.

Maintaining administrative records for groups including attendance and case notes

Administering survivor/caregiver re-assessments at three-six month intervals to all participants.

Responding to general/public requests for information about stroke and community resources.

Participating in regional facilitator teleconferences to support sharing of successes and challenges and to support regional consistency

Attending regional meetings on a quarterly basis (Community Reintegration Leadership Team). METHOD OF DATA COLLECTION

Administration of the Stroke Services Evaluation Tool to evaluate participant satisfaction and changes to health status. Tool developed by Kingston group.

Stroke survivors completed the Stroke Impact Scale (SIS), a recognized standardized tool

Caregivers completed the Montgomery Borgatta Caregiver Burden of Care, a standardized tool

The quotes are from the Stroke Services Evaluation tool and anecdotal observations. SERVICES PROVIDED

7 facilitated stroke groups

2 Heart and Stroke Foundation Living with Stroke series completed & 3 planned for 2014

1 Peer Visiting Program


REFERRAL SOURCES IN LLG AND HPE Fig. 1 Source of New Referrals

Source: Stroke Services Evaluation Tool Media exposure (newspaper articles, radio interviews, advertising on local media) has significantly contributed to the recruitment of new participants (i.e. self referrals). Health care partners (hospital, rehab and primary and community care) also continue to be significant referral sources. The Peer Visiting Volunteer Program in Perth where current members of the Stroke Survivor & Caregiver Group receive training to visit new stroke survivors in the hospital setting has also become a source for new referrals. This program provides a tangible link to stroke survivors already living in the community. Current group participants also act as informal recruiting agents for stroke survivors and family members who may not have heard of the groups from other sources. Referrals through current participants including the Peer Visiting Volunteer program which provides new participants with a mentor as they begin to transition into the group; they come in with a friend rather than as a stranger. “Real interesting group to listen to about how they do things in life to cope with the position they are in.” Caregiver “This group allows people who participate to know they are a person first and we are all here to support each other. It is nice to share our lives.” Stroke Survivor

Kingston Evaluation December 2012 produced similar findings:

Media/Self-Referral – 13 = 43%

Community – 7= 23%

Current Participants – 6 = 20%

Hospital/Rehab – 4 =13%


STROKE SUPPORT GROUP MEMBERSHIP in LLG and HPE

36 survivors and 17 caregivers are attending support groups

14 attended Living with Stroke© (LWS), a 6 week self-management program It should be noted that during the most recent offering of the LWS Program, two stroke survivors acted as co-facilitators. Both of these stroke survivors had completed a previous LWS Program and had also attended LWS-specific training prior to assuming this role. Acting as co-facilitators not only provides excellent role modelling for other stroke survivors, it also significantly contributes to the self-esteem and self-confidence of the survivor-facilitators. Groups continue to increase in membership as new stroke survivors and their caregivers become aware of the program and/or are referred through their health and social support services. As new members enter the program, the current participants often assume mentorship roles sharing their stories, successes and challenges. This provides both practical and emotional support to those at an earlier stage in their recovery journey. As well, group problem-solving often proves to be very beneficial as members share approaches, resources and suggestions for effective community reintegration.

“I am a new participant in the programme and enjoy the opportunity to socialize with others and look forward to attending many more meetings.” Survivor “I enjoy hearing stories from other members on how they cope with day to day problems.” Survivor

“Very helpful when participants share the problems they are facing and suggestions for dealing with them. It would be great if everyone in the group would make this meeting a priority. The more attending makes it better!” Caregiver “I think the group sessions are informative and all in all excellent.” Caregiver “Enjoying this group, the info I receive, the friendships we have formed. Look forward to meetings, right length of time- 2 hrs. Am happy my spouse can attend with me and learn just like me.” Survivor


PARTICIPANTS WHO HAVE SEEN IMPROVED HEALTH IN LLG AND HPE- CAREGIVER BURDEN

Fig. 2 Caregiver Burden Scale

Source: Montgomery Borgatta Caregiver Burden Scale

The Montgomery Borgatta Caregiver Burden Scale consists of three domains:

Objective Burden which is defined as perceived infringement or disruption of tangible aspects of a caregiver's life (scores above 23 would indicate a need for intervention).

Subjective Stress Burden which is defined as the emotional impact of caregiving responsibilities on the caregiver (scores above 13.5 indicate a need for intervention).

Subjective Demand Burden which is defined as the extent to which the caregiver perceives care responsibilities to be overly demanding (scores above 15 signal a need for intervention)

A total of 11 caregivers participated in both pre and post surveys. Due to the limited numbers related to the relatively short timeframe for data collection, individual results have significant impact on collated data. Caregivers included in this collection have been participating in the support groups for anywhere between 3 months and 6 months. Figure 2 demonstrates that the caregivers joining the groups have identified a need for support, with a significant percentage in need of intervention, particularly in the area of subjective stress burden, the emotional impact of caregiving. Within the short study period however, Figure 2 also indicates a decrease in the need for intervention in relation to the subjective demand burden suggesting that the opportunity to share experiences with other caregivers provides a realistic context for improving the perception of the demand of the caregiving experience. Results are impacted by a variety of contextual factors including:

Severity of the stroke

Age of the survivor and caregiver

Health of the caregiver

Relationship status pre-stroke

Time frame since the stroke event

Co-morbidities experienced by the stroke survivor

Deficits resulting from the stroke (e.g. incontinence, aphasia, impaired mobility)


Fig. 3 Caregiver Burden Scale – Average Pre-Post Scores

Source: Montgomery Borgatta Caregiver Burden Scale

Figure 3 indicates a stability of scores across the evaluation time frame (1 outlier removed) indicating persistent caregiver burden and a need for ongoing support. Caregiver Burden & Support Groups

The three domains of the Montgomery Borgatta Caregiver Burden scale are addressed through various strategies including:

Education re stroke to enhance understanding of the current health status of their loved one as well as tips to support illness prevention & health promotion to reduce the risk of another stroke or other disease (e.g. cardiac and diabetes).

Information on identifying stressors and implementation of coping strategies.

Referral/facilitating connections to community supports and, when identified as a need, to additional counselling.

Peer support and providing the opportunity to engage with others who are on the same life journey.

“Appreciate all the handouts and discussion on programs and resources which I was not previously aware.” Caregiver “I find going to the caregiver and couples group has helped my depression.” Caregiver

Kingston Evaluation December 2012: Median and upper and lower range of scores on Objective Burden and Subjective Burden decreased on the post-test. The Kingston time frame for evaluation was longer at 6-8 months.


DEMONSTRATED SATISFACTION OR COMPLAINTS IN LLG AND HPE- CAREGIVERS AND SURVIVORS

Fig.4 Caregiver Satisfaction Evaluation Tool Results

CAREGIVER SATISFACTION WITH GROUPS

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Location of

groups

Frequency of

sessions

Skill of

facilitator

Group

sharing &

discussions

Building new

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Good to Excellent

Fair

Poor

N/A or Don't Know

Fig. 5 Survivor Satisfaction Evaluation Tool Results

SURVIVOR SATISFACTION WITH GROUPS

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Location of

groups

Frequency of

sessions

Skill of

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Group

sharing &

discussions

Building new

relationships

Good to Excellent

Fair

Poor

N/A or Don't Know

Figures 4 and 5 indicate a high level of satisfaction with groups for both stroke survivors and caregivers.

Note that all respondents rated the skill of the facilitator as good to excellent. This can be a significant

factor in the sustainability and success of support groups as the facilitator must ensure that the group

functions effectively, meeting the needs of diverse participants who are a different stages in their

recovery journey. A skilled facilitator makes certain that all participants have an opportunity to

contribute and that the group retains a positive, forward-moving dynamic.


The facilitator also networks with community supports and services and coordinates information

sessions with subject experts in response to group needs and requests (e.g. Occupational Therapist on

perception/cognition, pharmacist for medication management, financial consultant for disability

benefits)

“(Name of facilitator) is a very good facilitator, keeps meetings moving, very informative.” Caregiver

“Have an excellent convener now. Don't change. Our questions are answered, if not (the facilitator) finds out for us. We are a relaxed group and really enjoy our discussions. And we like occasional speakers.” Survivor

“Facilitator is very good and gets everyone involved in group talks.” Survivor “Having an educated professional lead our group has been great.” Caregiver “Our facilitator has the knack to make us feel comfortable and relaxed. Does not treat us as handicapped.” Survivor

PARTICIPANTS WHO HAVE SEEN IMPROVED HEALTH IN LLG AND HPE – STROKE SURVIVORS

Fig. 6 Survivor Perceived Recovery Scores

Kingston Evaluation December 2012: Similar results with high ratings for both stroke survivors and caregivers across all categories.


Stroke survivors self-perceived recovery scores increased from 62 pre to 69 post on a scale of 0 - 100, with 100

representing full recovery and 0 representing no recovery. This is a clinically significant change.

Fig. 7 Survivor Well-Being Evaluation Tool Results

The majority of stroke survivors saw the group as “good to excellent” in contributing to a sense of wellbeing as well as helping them cope with anxiety/nervousness, depression and stressors. Note that a recent study found that psychosocial distress (including stress and depression) was associated with increased risk of stroke in people over age 65.

This effect can be attributed in part to the social inclusion that is experienced in group.

The support groups activate mutual aid and self-help among the members.

Participants have the opportunity to connect with each other outside of the group as desired.

One of the effects of group involvement, as reported by participants, is gaining a more realistic view of recovery.

“I have learned to relax and breathe. They have helped and continue to help.” Survivor “I still have a great problem with stress, anxiety. Working on this on own. Listening to group on how they cope.” Survivor “Continue to have guest speakers; listen to needs of group; it has improved my life. Thank you so much!” Survivor

Kingston Evaluation December 2012 found similar results with a change in perceived recovery

scores from 63 to 70.


PARTICIPANTS WHO HAVE SEEN IMPROVED HEALTH IN LLG AND HPE- CAREGIVERS

Fig. 8 Caregiver Well-Being Evaluation Tool Results

COMMUNITY REINTEGRATION - CAREGIVERS

"How have support groups helped with..."

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Sense of

wellbeing

Coping with

anxiety &

nervousness

Coping with

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Coping with

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Good to Excellent

Fair

Poor

N/A or Don't Know

SOURCE: STROKE SERVICES EVALUATION TOOL

“When my own health at times is not good, I find the stressors hard to take.” Caregiver “I have a lot going on in life right now… and have been dealing with a lot of pain but it helps to take my mind off things and have other people to talk to and learn about various topics.” Caregiver

Kingston Evaluation December 2012: The majority of caregivers & survivors rated the group as “very good” or “excellent” in helping with their overall sense of well-being, coping with anxiety/nervousness, coping with depression and coping with stressors.


PARTICIPANTS WHO HAVE SEEN IMPROVED HEALTH IN LLG AND HPE – STROKE SURVIVORS

STROKE IMPACT SCALE PRE AND POST CHANGES Fig. 9 Pre-to Post-Test Changes on Communication Sub-Scale

Source: Stroke Impact Scale

Figure 9 shows that survivor perceived abilities to communicate improved on all eight communication domains

The prevalence of aphasia in stroke survivors necessitates supportive communication strategies (by trained facilitator) in the group

The group is a safe environment where survivors can practice and develop their communication skills. Simply feeling comfortable to participate in discussions can positively impact on communicative abilities.

“I am reading much more and walking more and meeting nice people.” Survivor

“Choice of topics is excellent-I have learned a lot and appreciate the opportunity to talk.” Caregiver

Kingston Evaluation December 2012 demonstrated perceived abilities to communicate improved on five out of eight items on the post-test


Fig. 10 Pre-to Post-Test Changes on Participation Sub-Scale


Figure 10 shows an improvement or relative stability post-test on six of the eight participation domains

A support group can be a key enabler of broader community engagement and a return to pre-stroke activities and relationships for both the stroke survivor and caregiver

Of particular interest is the increase in the ability “to control your life as you wish”. Independence is a key factor in successful community reintegration, increasing self-confidence and self-esteem. It can also have a significant impact on caregiver burden – as the survivor gains independence it provides opportunity for the caregiver to return to pre-event interests as well.

“Group has added many benefits to my life.” Survivor “I do have other health problems, but all in all, I do get a lot out of the meetings.” Survivor

Kingston Evaluation December 2012 noted an absence of consistently positive for participation

domains reasonably attributed to short span of time between pre and post-tests.


Fig. 11 Pre-to Post-Test Changes on Memory and Thinking Sub-Scale


Memory and thinking are often negatively impacted by stroke and can increase caregiver burden as well as decrease the independence and confidence of the stroke survivor.

Figure 10 illustrates improvement in 5 of the 7 memory and thinking domains

The capacity to concentrate and to process ideas/thoughts is pivotal to successful reintegration as the survivor re-learns how to manage daily life processes

Pre- and Post-Scores on Stroke Impact Scale – Mood Sub-Scale

Respondents noted an increase in five out of the eight domains for mood. This is a surprisingly positive finding for mood issues considering the short time of 3-6 months for this data collection period. These findings can also be interpreted with the added context of the Kingston evaluation as noted below.

Kingston Evaluation December 2012 demonstrated an increase on six out of seven cognitive items.

Kingston Evaluation December 2012: Respondents indicated an increase or no change in their mood on five out of eight questions. The lack of consistently positive results can be interpreted in a number of ways:

Depression is a reality for 50% of stroke survivors within the first two years after a stroke. The responses could indicate symptoms of depression, or simply the reality of recovery being a slow and frustrating process for many survivors.

The SIS is a self-report measure, and Mood was the only section that had questions using negative wording (i.e. responding ‘yes’ to remainder of questions indicated a positive response). This could have created some confusion and caused respondents to rate themselves incorrectly.


Effect of Health-Related Knowledge Obtained Through Group Participation

The informal nature of the support groups provides “teachable moments”.

Discussion in the support groups includes symptoms of stroke, health concerns, and feedback on the information provided. Participants and the facilitator offer support as survivors and caregivers restore their life after stroke.

PARTICIPANTS RECEIVING DISCHARGE LINK

Eight stroke survivor support group participants received therapy services through the Discharge Link Program.

Note that a significant number of support group participants had experienced their stroke event several years

ago, prior to the implementation of the Discharge Link Program in 2009. The Discharge Link Program for

enhanced rehabilitation services would not have been required by all those participating in the support groups.

PARTICIPANTS ABLE TO TRANSITION BACK TO COMMUNITY SETTING IN LLG AND HPE Fig 12 Survivor Community Re-Integration Evaluation Tool Results

Source: Stroke Services Evaluation Tool

“Everyone is friendly and great to know those in the group. The group gets me out and meeting other people.” Survivor


HOSPITAL ADMISSIONS

All group participants have succeeded in remaining in the community. Currently, most live in their own homes, or with family members.

During the evaluation period, no caregivers were admitted to hospital

Five stroke survivors were admitted to (and discharged from) the hospital during the evaluation period. Of the five, one (a fall resulting in a hip fracture) may have been related to stroke. The remaining four were not related to stroke (teeth extractions, day surgeries and bladder cleansing)

Fig. 13 Caregiver Community Re-Engagement Evaluation Tool Results

“We find the group very friendly and supportive. It is just so nice to be with people who get it. It’s nice to hear other stories and see the progress they are making month to month. Facilitators have been excellent. We both enjoy the special speakers and the topics are relevant to our situation.” Caregiver

“We enjoy coming. It is good to be with other stroke victims, to share similar experiences, and to see progress others make. We enjoy the special speakers and it is good to learn from them. This group has been very welcoming to us.” Caregiver

Kingston Evaluation December 2012: Similar results with high ratings across all categories with exception of volunteering which

has a high percentage of N/A or Don’t Know responses.


SUMMARY

Scores of how the groups assisted with sense of wellbeing were rated as good to excellent for the majority of both caregivers and stroke survivors.

Scores of how the group assisted individual abilities to cope with anxiety, nervousness and depression were rated as good to excellent for the majority of both caregivers and stroke survivors

Caregivers expressed the value of the groups in contributing to emotional wellbeing, with evidence in a short time frame of a decrease in their perception of subjective demand burden.

System navigation is provided to stroke survivors to effect successful reintegration and to caregivers to decrease their burden of care (e.g. link to primary care provider for a caregiver who did not previously have that service)

The improved Stoke Impact Scale scores for abilities in communication, participation, memory and thinking are all very positive and, in fact, surprisingly so given the short time frame for data collection. Group participation offers a safe non-judgemental environment for stroke survivors to practice conversation skills.

The feedback from the group participants indicates that the success of stroke services is directly related to the skills and capabilities of the trained facilitators. These skills are necessary to assess the complex needs of participants, to bring discussion topics on anxiety or depression to the group, to successfully refer to appropriate community services, and ultimately to have a positive impact on the reintegration of stroke survivors and their caregivers to the community and their new life after stroke.

“I have come to realize you make best of situation you are in.” Survivor

RECOMMENDATIONS FOR CONTINUED SUCCESS:

Ongoing funding to support a professional facilitator for all support groups with consideration for increased funds as the groups continue to grow in numbers. Capacity is already stretched.

Additional funding to support Speech Language Pathologist consultation to provide the professional services for an Aphasia Support Group to meet the functional communication needs of those stroke survivors experiencing aphasia. This model could include an outreach OTN component for rural areas.

Annual versus semi-annual evaluation process as the results in this evaluation have replicated the data in the Kingston Evaluation Report (December 2012). As well, the time required to perform data collection is very challenging given the part time status of all the facilitators. Additionally, the caregivers and stroke survivors have to make a significant time commitment for the data collection and this may become burdensome. With respect to the amount and type of data required to report on ‘improved health’, recommendation would be to limit data collection to perceived recovery scores for stroke survivors (i.e. eliminate Stroke Impact Scale and Caregiver Burden Scale) and to simplify the Stroke Services Evaluation tool.


Additional funding to support the coordination and equipment for OTN outreach of this valued service in each current community to less populated rural areas within the respective catchments where the critical mass may not exist to support a group. For example, requests for this service have already been received from Bancroft, Picton, Napanee, and Sharbot Lake.


APPENDIX A Kingston Evaluation - Executive Summary

S.U.P.P.O.R.T. Stroke Understood: A Peer Program Optimizing Recovery Together

The Seniors Association stroke services evaluation illustrates the many positive outcomes evolving from the stroke services program. The one-time funding enabled us to evaluate and demonstrate the benefits of continuing to provide services. The evaluation process required of the SE LHIN was comprised of several components including the use of two evidence-based standardized tools (Stroke Impact Scale (SIS) and Montgomery Borgatta Caregiver Burden Scale). As well, to meet additional SE LHIN reporting requirements, the Stroke Services Advisory Committee constructed an internal evaluation tool. The Committee also engaged two volunteers (social workers) independent of our services, to interview participants and gather case studies. Five distinct groups are supported by the facilitator; two survivor groups, one caregiver group, one couples group and one telephone outreach group. The LHIN funding enabled the facilitator to resume participant recruitment using various modalities including formal advertising. As a consequence, thirty (30) new referrals were received between April 1 and November 12, 2012. Thirteen (13) were caregivers and seventeen (17) were stroke survivors, most of which were self-referrals. Of the other referrals, three originated from community social work affiliated with the Discharge Link Program, three came from St. Mary’s social work and three were internal referrals from the Association’s community support services. The age range of the new participants is 45 to 80 years old which is consistent with those who have been attending prior to April 2012. The new referrals increased participation in one survivor group by over 70% and the caregiver group by 18%. The professional facilitator provides individual and group psychosocial support and system navigation. Conversations in the groups and by phone with individuals often result in referrals to Hospice, a “Revved Up” Community Exercise Program, Thai Chi, VON Care Program, CCAC, exercise programs at The Seniors Centre and many other health and social services. The four facilitated groups meet monthly for at least one and a half hours. All but one participant lives in the community (one resides in long-term care [LTC]). It should also be noted that there are five caregivers whose partner/spouse resides in LTC. There are challenges that can preclude the attendance of caregivers including the level of care the survivor needs, the lack of respite, financial limitations or poor caregiver health. For survivors’, non-attendance typically relates to limited resources such as lack of family support, work commitments or health issues. The transportation assistance provided through this funding has been instrumental in influencing regular attendance.

“Participating in the group made me feel that I was not alone in the struggles of my ‘new life’”


A key indicator in the LHIN funding agreement was ‘to identify the number of participants who have seen improved health while participating’. The Stroke Services Advisory Committee developed a tool to measure self-perceived improved health. Figure 7 below demonstrates that the majority of stroke survivors felt their health had improved. The full report demonstrates similar results for caregivers. Figure 7 Stroke Survivor Well Being

How has attending the stroke groups

helped with ...

020406080

100

Your sense of

well-being

Coping with

anxiety and

nervousness

Coping with

depression

Coping with

stressors

% r

esp

on

de

nts

Good to Excellent

Fair

Poor

N/A or Don't Know

“I find the sessions very good to help my loneliness and depression” (survivor) “Fantastic moral support and encouragement – wonderful to talk to people who really understand what you are going through” (caregiver) The findings clearly demonstrate:

Growth in referrals and activity;

Provision of system navigation support;

Positive effects of group participation on well-being, coping with anxiety and nervousness, and depression and stressors for both caregivers and stroke survivors

Improved post test scores on the Stroke Impact Scale in the areas of communication, memory and thinking, and perceived recovery;

Decreased objective and subjective caregiver burden using the Montgomery Borgatta Caregiver Burden Scale;

Strong participant satisfaction;

Rich and positive feedback from focus groups.

These results are particularly indicative of the significant impact of professional psychosocial facilitation within a supportive community infrastructure on outcomes. The following quote tells the story of the full benefit of this service to both the individual and the health care system. This funding opportunity has supported a critical new dimension of evaluation in community support and stroke care that will be important to the SE LHIN and beyond.

“I came to the group and I’ve learned so much, I feel much better and the way I look at it, it’s groups like this that kept me from rushing to a hospital thinking something was wrong…” (survivor)

southeastern ontario regional stroke support...

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