On Our Way: Recovery News Vancouver Acute & Community Mental Health Services Volume 1, Issue 3
October 2009
Hope Goal-Directed Self-Determination Awareness & Potentiality Meaning & Purpose
How are We Doing? Recovery Survey of Consumers and Families From the editor: Exploring Recovery Welcome to the third edition of “On Our Way: Recovery News”. This edition looks at how we are doing as we embrace the concept of recovery and explores what recovery entails from the perspectives of those with lived experience of mental illness, family members and service providers. As a part of this exploration, we continue to feature articles about what has been happening in our system. Articles cover a survey conducted with consumers and family, the recovery dialogues and highlights from a workshop on trauma informed care and the recovery model. As well, we’ve included “Perspectives Pages”, “Words of Wisdom” and, as a result of a reader request, we have also added a new feature called “Did You Know?” This will offer brief highlights of recovery oriented resources and information. A question addressed to the “Ask Dr. Maggie Bennington-Davis” column, related to recovery across cultures, is also answered. A second set of questions submitted to us was so complex that we’ve decided to use the topic of the questions - extended leave (a form of outpatient committal) - as a theme for our next issue. We’ve saved Dr. Bennington-Davis response on that topic for our next issue. Next time around, then, we will be looking at extended leave, what it is, what it’s like to be on it, and how it does or does not relate to recovery. We welcome your articles, letters and ideas on this and other topics related to recovery. Please send to renea.mohammed@vch.ca. Happy Reading!
By Simon Davis
With Vancouver Community Mental Health Services (VCMHS) implementing a recovery model, a decision was made last year at the Recovery Task Group to survey our two main stakeholders, consumers and family members, about how well this implementation was going. Four UBC students doing their Ph.D.s in social work undertook this project as part of a course assignment, and recently submitted the results. Survey of Consumers Adults with recent experience as consumers at Vancouver Coastal Health were recruited for both a questionnaire and a focus group. Advertisements were sent out on-line and also posted at the adult mental health teams. Consumers could either do a “hard copy” of the questionnaire, or complete it on-line. Those attending the focus group were given honoraria. The response rate was not large, in part because participants were recruited “passively”: UBC does not permit active recruitment of consumers (e.g. encouragement by case managers) in these sorts of studies, for ethical reasons. Thirty-two persons completed the questionnaire, and six persons attended the
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How are We Doing? continued… focus group. Ten had registered for the focus group, but four dropped out at the last moment. In the questionnaire, a number of elements of service delivery were rated from 1 (the poorest rating) to 5. The overall mean score given by consumers was 3.88, which is relatively high and close to a “B” as a letter grade. Interestingly, this was a higher rating than that given by staff of VCMHS in a 2008 survey using the same questionnaire. It was also found that consumers who had been with VCMHS for a longer period of time gave the agency higher ratings. This result appears to be positive for the agency, and also speaks to the importance of therapeutic engagement in early stages of treatment. There were a large number of “don’t know” responses, similar to the parallel surveys done of staff and family members. This could mean that good programs are not being publicized, but could also reflect gaps in service. Service elements that received the lowest scores (although none below 3/5) had to do with: • risk-taking being discouraged; • not enough outreach; • consumers not being involved in program evaluation; • not enough recognition of goal achievement by consumers; • not enough availability of programs on weekends and after-hours. This element also got poor ratings in the staff and family surveys. In the focus group there was discussion about how people defined recovery, how the model was being implemented at VCMHS, and which experiences the participants found to be “helpful” and “hindering.” Concerning key aspects of recovery, consumers emphasized (a) the importance of hopeful messages, particularly early on in their treatment, (b) the ability to carry out activities of daily living without assistance, and (c) the importance of being active and responsible agents. While the literature on recovery deemphasizes a symptom-based definition, participants still included symptom remission in their understanding of the term. One participant noted that “the term [recovery] gets thrown around and you don’t really know what they [practitioners] mean.”
Page 2 Concerning helpful experiences, participants were generally positive about their time with the team, although noted that locating, and being accepted by, the program could be a challenge. Focus group members spoke positively about group experiences, and mentioned how they were able to maintain friendships with peers they had met at a VCMHS group. Concerning experiences that “hinder,” participants spoke about a lack of treatment options, discouragement of alternative approaches, not enough talk therapy, accessibility and gate-keeping issues such as program eligibility, and high staff turnover. Special mention should be made of the question of “exiting” VCMHS teams. Consumers expressed concern on this point, and suggested that service termination be client-driven. A number were worried that they would be unilaterally discharged if they appeared “stable” or “high functioning” when they believed they still needed support. Related to this was the view that goal-setting, while a good idea, should be approached gradually and not used as a tool to get people to exit the team. Survey of Family Members Family members whose relative(s) had had recent experience with VCMHS were recruited on-line through a listserv, or by posters sent to the teams, to family support group coordinators and to be posted in waiting rooms. Twenty-one persons completed a two-part questionnaire, and nine attended a focus group. The questionnaires consisted of a quality of life instrument created by the Schizophrenia Society of Canada (SSC), and the family version of the questionnaire given to consumers. Of the 30 total participants, all but one were women, and most were mothers of the mentally ill person. The average age of participants was 52. Authors of the study report noted that this demographic is “consistent with the literature pertaining to the gendered nature of unpaid care-giving services,” and suggested that family support constitutes a significant subsidy to the service delivery system. Concerning the SSC quality of life survey, 100% of respondents said that the following were very important for the person with mental illness:
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How are We Doing? continued… • • • •
community based mental health support and services; social, recreational and leisure activities in the community; a family doctor, and dental care.
Respondents also identified a number of factors harmful to quality of life, including substance misuse, social isolation, inadequate housing and income, and lack of purpose. Respondents also spoke about the importance of their loved one having a sense of belonging, peace, and optimism, and of being seen as having strengths and skills. These quality of life issues are very much consistent with the recovery vision. The Number One concern expressed by respondents was communication and information-sharing between family members and mental health professionals. Family members expressed the conviction that VCMHS staff needed to include families more, and that information from families was vital in supporting treatment. Some spoke about a one-way street, i.e. the professionals accepting information from families, but not giving it back. Others spoke about staff over-emphasizing confidentiality, and “hiding” behind the civil rights issue, to the detriment of client care. Along with matters of information-sharing, concern was expressed by family members about the safety of their loved ones, and the worry that in the worst case scenario they would get a phone call informing them of a suicide. Respondents described the family relationship as one of long-term crisis management, a plight that took a toll on their own health. Family members did not have complete confidence that the mental health system would be there in times of crisis. They felt that extra support – such as hospitalization – needed to be available when needed, and not when it was too late, for example after an eviction. The findings of these two surveys confirm information gathered at other forums, and from the literature. As someone who sits on the Family Advisory Committee and the Recovery Task Group, I can say that every effort will be made to address the concerns identified.
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Ask Dr. Bennington-Davis
Dr. Maggie Bennington-Davis at the VCMHS Recovery Conference Question: How does recovery across cultures look? What does it look like in culture that values lifelong interdependence with family? Answer: Dr. Ragins talks about 4 components of Recovery: Hope, Empowerment, Selfresponsibility, and having a Meaningful Role in Life. I imagine that each of these areas may be manifested in different ways in different cultures, but at their essence, I suspect each is pertinent no matter what one's cultural influences are. In western culture, empowerment and selfresponsibility (autonomy) have been equated with independence, but that is just one interpretation of empowerment and selfresponsibility. Those areas could easily be interpreted in a culturally-consistent way, including... in a family-connectedness context. In cultures that value family interdependence, empowerment could be interpreted as empowerment of the entire family unit (and in fact, this would be the ultimate healthy way to be) wherein the family itself organizes around its strengths and coping, instead of waiting for "cure" or ostracizing the family member for not being able to function in a usual way. So, I suggest that each person - therapist and consumer - take the four concepts of Recovery (hope, empowerment, self-responsibility, meaningful role) and define what those look like within their culture and value system. And that is what Recovery looks like for them.
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Words of Wisdom
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Trauma Informed Care and the Recovery Model by Susanne Hawkins
“Recovery means connecting to nature. When I feel the power of nature I am in touch with my inner self. Recovery also means being in balance and nature helps me with that.” - Susan Trapp “For me recovering from mental illness means getting stronger in regards to the way I think and feel about my accomplishments. I enjoy being a PSW and assist people find work through the "Therapeutic Volunteer Program". This gives everyone hope and confidence for a brighter future. I strongly believe that each person deserves a chance to grow in their own way.” - Diane Desjardins “’Personal medicine’ refers to the things we do that raise our self esteem and make life worth living. Fishing, meditating, exercising, having dinner with a friend, being a good mom – all of these things and more can be vital to our recovery.” - Patricia Deegan “Dreams sometimes change, but dreams should always be there, and you should never stop dreaming…Sometimes you have to take baby steps…but know that you have the possibility of making that dream come true.” - Sherri “Recovery is about having confidence and selfesteem. There are things I’m good at, and I have something positive to offer the world.” - K.T. Mueser et. al. Do you have a recovery quotation or “Words of Wisdom” statement based on personal insight you’d like to share? Please send to: renea.mohammed@vch.ca
In March of this year The Education Committee of Vancouver Community Mental Health Services (VCMHS) presented a 2 day workshop entitled “Treating Complex Psychological Trauma within the Recovery Framework” with Dr. Lori Haskell. This workshop was very well received by the 80 people in attendance, with many people saying that it was the best workshop that they had ever attended. The Education Committee felt that it was important to continue the impetus from the May 2007 Recovery Conference. At that conference Dr. Maggie Bennington-Davis talked about “Partners in Recovery: Trauma Informed” and Dr. Steve Onkin spoke about “micro aggressions”. This conference emphasized the importance of recognizing that many mental health consumers have had trauma in their lives. Dr. Bennington-Davis informed us that studies in the US and Canada show the prevalence of trauma in 60-98% of persons with serious mental illness in publicly funded and hospital settings. Trauma has an impact on how people view the world and how they live their lives, and can impact their illness. We must also recognize that diagnosis, hospitalization, seclusion, restraints, certification, medications and stigma are all traumatizing events. We, as a service and as individuals need to ensure that we do not traumatize or retraumatize those who use our service. Dr. Lori Haskell is a psychologist in private practice with over 20 years of clinical experience. Dr. Haskell’s clinical and research interests include trauma, revictimization, sexual abuse, and sexual violence in relation to women’s psychological development. She also works on the issue of violence prevention. She has a status appointment as an Assistant Professor in Psychiatry at the University of Toronto and is an academic research associate with the Centre for Research on Violence Against Women and Children. Dr. Haskell also works as a supervisor, consultant, researcher and educator. She has presented at workshops, conferences and professional meetings in Canada and internationally on issues related to trauma. Dr. Haskell’s presentation on trauma fit in well with the key concepts of recovery: Hope,
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Trauma Informed Care continued… Goal Directed, Self Determination, Awareness and Potentiality and Meaning and Purpose. A cornerstone of trauma informed care is the aim to understand our clients so as to help them understand themselves. Our clients need to make sense of what has happened to them. We need to change from “What is wrong with you?” to “What has happened to you?” Both Dr. Haskell and Dr. BenningtonDavis talked about the interconnection of psychological, biological and neurobiological effects of abuse. Trauma is seen as a defining and organizing experience that forms a core part of an individual’s identity (their sense of self, sense of others, and beliefs about the world). It is important for us to understand the effects of trauma on psychological well-being, considering that symptoms may be adaptations to coping with trauma. Trauma survivors are often given many diagnoses as they are processed through the mental health system. Dr. Haskell emphasizes resiliency in humans, the importance of engendering hope and recognizing strengths and inner resources-all critical elements of a recovery culture. She talks about the importance of forming a respectful relationship with our clients with an emphasis on collaboration, empowerment and hope. Collaboration requires acknowledging our responsibility to our clients and the power we have in the relationship, while deferring to their personal expertise and authority. It involves recognizing that the client has ultimate control over his/her actions and recovery, learning to balance empowerment with responsibility. She says, “Our intentions need to promote agency in our clients. Clients benefit most when they participate actively in therapy and have control over decisions that affect them. The expectation that clients be “cooperative” and “compliant” resonates with being controlled and abused. It is important that we identify and name client strengths. A central therapeutic goal is to provide clients with the tools and knowledge they need to feel empowered and to learn skills to manage their own symptoms and lives. Dr. Haskell emphasizes helping clients develop self capacities. She talks about teaching skills to do with self awareness and positive identity, setting boundaries, affecting tolerance and regulation, providing psycho-education about the effects of trauma, education about mental illness and encouraging mindfulness in place of
Page 5 reactivity. Cognitive Behavioral Therapy and Dialectic Behavioral Therapy are examples of skill building therapies. Examples of specific skills may include relaxation and mindfulness techniques, cognitive reframing, distraction, self soothing, modulating feelings, and developing safety plans Dr. Haskell states that the most powerful, helpful, respectful and empowering clinical model involves working from a trauma framework which understands clients in the context of their life experiences, their culture and society. We want to be aware of trauma in our client’s lives and understand how it impacts them. We want to create an environment of safety and educate staff so that triggers are minimal.
Did You Know? There are two, free, CognitiveBehavioral Therapy (CBT) programs available online for use by people living with depression: "Moodgym" (from Australia): http://moodgym.anu.edu.au/welcome
"Living life to the full" (from the U.K.): http://www.livinglifetothefull.com/ index.php
Canada now has a Registered Disability Savings Plan (RDSP) program. This program is intended to help parents and others save for the long-term financial security of a person with severe or prolonged disabilities who is eligible for the Disability Tax Credit. It allows the beneficiary to accumulate funds by means of deposits and tax-deferred growth. Google “RDSP” for more information.
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‘LET’S DIALOGUE’: RECOVERY DIALOGUES Part 2 By Shirley Rogers Note: See the April/ May edition for “Part 1” It is often difficult to determine what does and does not make a program successful. This is particularly the case where the program design remains unstructured and holds an expectation that it will ‘organically’ create its own momentum, value and insight for all participants. Organizers usually rely on feedback through written evaluations which are frequently requested at the conclusion of the program. At this time participants most often share what they most enjoyed or appreciated. However, there is a tendency for the participants to give little or no mention to what they thought did not work or was not enjoyable for them. While all feedback is appreciated, it must be noted that the most helpful responses for any program organizer must be fully constructive, sharing what was both good and bad about their experience. Using constructive feedback, the program organizers can then spend valuable time reflecting upon the process of program delivery and whether the goals of the program were achieved. A series of five such unstructured Vancouver Community Mental Health Services (VCMHS) "Let’s Dialogue” sessions were recently held at Ravensong Health Centre in which clients, family members and mental health workers discussed aspects of mental health, and perspectives on recovery. The format used was relatively unstructured with the free-flowing of ideas in a discussion group format. This ‘experiment’ of bringing together all the primary ‘stakeholders’ involved in the care of a person with a mental illness is considered a relatively new idea in our system of care. The goals were to learn from each other and to increase the stakeholders’ understanding of the benefits of a collaborative and inclusive approach to recovery in mental health. While there were
Page 6 many differing points of view, the participants reported that they were able to speak freely, they felt heard, they enjoyed hearing others' perspectives, and learnt from the experience of participating. In the words of one participant: “People had a lot to say and the discussions were considerate and thoughtful in tone … it was great to hear consumers, family members and mental health workers alike share recovery stories and how they found meaning and purpose. It was great as well to share different aspects of the system and how to get unstuck when you have a mental illness and the different ideas and resource sharing”. So, what process do we use in determining the success of the Recovery Dialogues? What have we learnt about being inclusive and utilizing a collaborative process? How can we use this type of inclusive process to ‘level the playing field’ so that personal health care is viewed and conducted as an equal partnership? And finally, did we deliver the goals the program set out to achieve? As mentioned in the April/May 2009 issue of On Our Way: Recovery News, the genesis for the Dialogue series originated from discussions stemming from the 2008 VCMHS Recovery Conference. At the Conference, guest speakers spoke about the need for clients to be more involved with decision making about their own health care. This sparked a lively debate along with many concerns about more collaborative and inclusive models of care. These discussions resulted in the idea of getting all the stakeholders together to exchange ideas that could encompass new and differing perspectives. Some questioned whether these discussion would be feasible, or valuable. Others suggested that staff may have trouble taking time out of their busy day to participate. For those of us who already strongly believe in a collaborative model, the value was easily recognizable. The bigger questions were: • how to go about getting all the stakeholder groups together and willing to exchange ideas in a respectful, timely and safe environment; and • what process could we use that would best achieve our goals of learning from each other and promoting a collaborative approach to recovery in mental health?
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Let’s Dialogue continued… We started by looking at the concept of the World Café that believes in “Awakening and engaging collective intelligence through conversations about questions that matter”. ("http://www.theworldcafe.com" www.theworldcafe.com) We applied the World Café concept to our own group which meant creating an environment where people and ideas could circulate physically as well as mentally. So we began each session with a lunch in which participants moved freely around the room, and became acquainted with each other. This was followed by a brief introduction to the topic, including the difference between dialogue and debate, and then we randomly assigned people to one of two groups. There were usually 15-20 participants in each group. Care was taken to ensure that each group included a mix of family members, service providers and clients, and that people did not stay in the same group for all five sessions. Initially, staff led each group, but by the end of the program, volunteers were facilitating the group discussions as ‘coaches’. We also used ‘scribes’ to take notes at each session. After the sessions the notes were collated by the organizers for themes, patterns and insights, and in later sessions were discussed with the group. Evaluation sheets were also completed at the end of each session. The most frequent comment in the evaluations was that we did not provide enough time for the discussion groups. The essence of the process was in ensuring that everyone contributed, (which sometimes meant simply listening), and making sure that no one person dominated the discussion. This truly was an 'organic' process in that one idea created new ideas and yet the ensuing discussion remained true to the original topic. We also recognized early in the process how important it is to observe and to document the conversation as it was occurring in order to make meaning of the sessions, and to review evaluations after each session. How do we know if this has translated into a more ‘level playing field?’ Some examples we observed were a shift in the thinking of many participants who had never had
Page 7 the opportunity to hear an issue discussed from another perspective. For example: a comment from a staff member to a client: “I never realized what it was like for you.”; and from a family member to a client: “I don’t know the best way to help.” This level of honesty and openness gave participants insight into how others think and feel, and the experience of challenging certain assumptions they may have held. Another example was the many participants who commented on how they often feel that they work in isolation and are disenfranchised within the mental health system. This surprised the various stakeholder groups, who all assumed that their group was more isolated and disenfranchised than the others. For some this represented a shift in their thinking toward seeing the importance of working collaboratively as equals. One participant encapsulated the tone of the sessions by saying: “It was good to have some sympathetic and supportive souls to chat with. So good to have staff, family & client members together. We really learn from each other.” In essence, the conversations demonstrate the openness, honesty and energy with which participants engaged with one another, and an increase in the willingness to see each others' perspective as being equally valuable. As for delivering the goals the program set out to achieve? We observed session by session collaboration, new insights and the sharing of ideas. In addition, the ‘scribing’ of each session later helped us to locate themes and insights that can be considered for mental health staff training and consumer and family education needs. Finally, we had many requests to continue ‘dialoguing’: “I think the “Let’s Dialogue” sessions are very important and should continue for the wide variety of input and the invaluable changes it can create for everyone involved in the mental health system.” We intend to continue with the Recovery Dialogues and hope that through these conversations we can challenge widely held assumptions about mental health, generate new ideas, bring about new possibilities, and foster a culture of collaboration.
On Our Way: Recovery News - Perspectives Pages
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PERSPECTIVES PAGES
discharged as early as after two months. That means no more institutionalisation. Over the years, and with help of drugs, the perception of mental illness by the medical staff and the patients themselves has also changed. But Full Recovery is possible only when the perception of mental illness by the society is changed. It is true that work and education stresses could be precursors of relapses. But this fear should not stop patients from using work and education in their fight to overcome their mental difficulties. Start small. As long as individuals are aware of their potential and others recognize this, and as long as they are given choices for their means of recovery, including consideration of their cultural background, I believe recovery is possible for all. Hope assures realization of the recovery goals. I have hope and I will share it.
Excerpt from “Recovery or Resilience?” By Zerom Seyoum
Zerom Seyoum
I believe it easier to recover from the other categories of mental illnesses than from schizophrenia. But I regard myself as another living example who suffered from schizophrenia for more than twenty years. I am still in the process of recovery. But my world view has changed from paranoia about the society to integration and assimilation to the society. Although I was deterred from using my potential and ambition, now I am leading a full, meaningful and happy life. After being told for years, and believing, that I have to be content with the government assistance and medications, it was hard to believe and learn, for the first time, that Recovery is a process when one happily lives with or without the symptoms, on his medications as long as s/he reclaims his or her life and future dreams, hopes and be productive. It is living beyond the illness that counts. Hallelujah. I am not doomed for life because of mental illness. After twenty two years of struggles with mental illness here I am recovering and writing about it. On May 22/ 2009 I have signed my first job contract (for the summer) with North East Mental Health Team. It would be self-centered to say, that finally, I have won. No. We all have won. In God we are all conquerors. My recovery and resilience may not be the same as the definition of the word recovery/resilience from the dictionary because I have changed but I am making the best of the changes I went through to reclaim my life. I have changed my life from “patient-hood to personhood.” That is what resilience means to me. What changed? For sure medications, but also mental patients are given the most indispensable tools for recovery: Hope and Encouragement. Patients are, now,
Autobiography in Five Short Chapters By Portia Nelson 1. I walk down the street There is a deep hole in the sidewalk I am lost…I am hopeless It takes forever to find a way out 2. I walk down the same street There is a deep hole in the sidewalk I pretend I don't see it I fall in again I can't believe I'm in the same place But it isn't my fault It still takes a long while to get out 3. I walk down the same street There is a deep hole in the sidewalk I see it is there I still fall in…it’s a habit My eyes are open I know where I am It is my fault I get out immediately 4. I walk down the same street There is a hole in the sidewalk I walk around it 5. I walk down another street Copyright © 1993, by Portia Nelson, from the book There's a Hole in My Sidewalk. Reprinted with permission from Beyond Words Publishing, Hillsboro, Oregon.
On Our Way: Recovery News - Perspectives Pages
A Journey of Self Discovery By Christopher Dodge
Christopher Dodge Six years ago my older sister was hospitalized and subsequently diagnosed with schizophrenia. While I had previously noticed some changes in her behavior, the hospitalization and diagnosis were life altering events for our relationship. My expectations of what the relationship might have been in future years, based on our childhood, suddenly changed over night. I knew from that point on that she would be less independent and more dependant on my family, specifically on me, due to the debilitating nature of the illness. However, through each of our own recovery, my sister and I have developed a new, different, and positive relationship as sister and brother. In my own recovery process I have begun to develop a greater sense of meaning and overall purpose to my life. In particular, I have become increasingly interested in the field of mental health and as a result am pursuing a Master’s degree to specialize in the area of caregiving and schizophrenia. I hope one day to eventually start a career within the mental health system in order to help other families better cope with, and recover from, their loved one’s illness as well as improve current mental health practice and policy. My educational and personal pursuits and aspirations would not have been possible nor actualized if my sister had not become sick and diagnosed with schizophrenia. While conducting my research for school, I have been given the fortunate opportunity to talk and share my experiences with other siblings who have a brother or sister suffering from schizophrenia. In discussing our experiences with recovery, I have learned that as siblings we
Page 9 all have gained a greater life perspective, personally grown, re-examined our personal values, and become more resilient and decisive. In addition, I have found that we have gained an increasing love, sensitivity, and empathy not only toward our ill brother or sister but to people who have disabilities in general. In dealing with the illness, many siblings have expressed becoming closer to their families and an overall bond forms that otherwise would not be as strong. We have also become more independent and have been able to persevere despite fallbacks. Recovery has meant collectively bonding with our family in times of crises, growing as individuals, and positively reflecting on the illness, the self, and our place in the community and wider society. Even witnessing my sister make small yet meaningful accomplishments or steps in her own recovery has given me an underlying sense of satisfaction and enjoyment. It is appreciating these little things that most people take for granted that I take comfort in. Originally, I had thought that the siblings would share horrific and tragic stories about mental illness and how it has negatively impacted their lives and families. Instead, they gave empowering and optimistic stories regarding their and their loved one’s recovery. I too talked of how my sister’s illness altered my life in ways that I could have never imagined, including giving my life a deeper sense of meaning and the ability to better understand the marginal and disenfranchised people in our society. From sharing our sibling experiences with recovery, a key message emerged: with major life challenges, especially the emergence of a severe and persistent mental illness in the family, comes the potential for positive changes and opportunities in people’s lives. Although siblings discussed problems and disruptions that arose due to the illness during their recovery, all siblings identified strengths that they have developed which resulted from coping with an ill relative’s severe mental illness. I have cultivated many supportive and long lasting relationships with families, consumers, and specifically siblings, through seeking out others who have had similar experiences and difficulties. This social support network that I have maintained has become paramount in my own recovery. Moreover, interacting with my support system is a crucial coping mechanism to help me, as well as the others, through the grieving process towards acceptance and allows us to work through our unresolved feelings and
On Our Way: Recovery News - Perspectives Pages
A Journey of Self-Discovery continued… emotions. I realize that each sibling copes and recovers in his or her own way while responding to their loved one’s illness. With that said, I have witnessed other siblings employ an array of strategies to help them recover. At extremes, some siblings attempt to ‘rescue’ the ill brother or sister and become over involved in their lives, while others completely disengage or ‘distance’ themselves from the family. Most of these patterns such as withdrawal seem like appropriate social reactions and ways to cope in these types of situations that evoke powerful emotions. Siblings often also have to support their parents, who are usually the primary caregivers, and thus experience a great deal of emotional burden and require comforting. I have learned that whatever coping strategies siblings employ from relying on religion to seeking therapeutic help are all valid and personal choices made on their recovery journey (and probably a never ending journey). Essentially, the impact of schizophrenia permeates most, if not all, aspects of our lives and persists throughout our life time. However, with recognition of the challenges that siblings will face and with proper management of the illness and help from support systems, one’s life can still be fulfilling, if not richer with the acceptance of the brother or sister’s illness. Reflecting on my own recovery, I take pride in knowing that through all the ups and downs, I have never given up hope.
Let’s Talk. Recovery Dialogues
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LISA By Enid Symonds Lisa’s parents never understood But they did really care They said she was different And it caused them to fear They said they often wondered Why she looked into nowhere But it seems like a similar action When our longings are not near They said this would convince me That she really was in pain For most of her emotions She found difficult to explain You know Lisa isn’t different From either you are I She was just reaching out For something passing by So when you think about some people Who experience mental strain Just remember we all have phases Of Love, Hurt, and Pain.
People with lived experience of mental illness, service providers, family members and other supporters are invited to listen, learn, discuss and share. Upcoming Sessions: Oct. 20, Nov. 17, Jan. 19, Feb. 16, March 16, & April 20 Time: 12:30 pm – 2:00 pm Location: Ravensong – 2450 Ontario Street To register call: 604-875-4111
Enid Symonds
On Our Way: Recovery News - Perspectives Pages
Recovery: A Staff Perspective By Stephen Epp Someone I know could be labeled a client, a co-worker, a teacher, and, most importantly, an inspiration. I have heard her story, watched her facilitate groups, participated with her on a committee, and visited her in an acute psychiatric ward. She has a mental illness, receives assertive community treatment, and, most importantly, she has a life. She is not an isolated example. I regularly witness people with incredible stories of trauma, victimization, and severe mental health symptoms demonstrate resilience, recover, live beyond their illness and develop a purposeful life. As we know, mental illnesses can be devastating to the individuals affected and also to their families. These illnesses create serious barriers to quality of life. For people with mental illness, the client and family recover by reclaiming, regaining, and recovering the roles in their lives that lead to social inclusion, meaningful engagement in life, and participation in their communities. That is the goal. At Strathcona Mental Health Team, I have found that the severity of a mental illness does not seem to predict a person’s ability to make friends, build connections, and create a life of which they are proud. The largest barriers to increased quality of life and reclaiming valued roles in society seem external to the illness. I see societal attitudes, stigma, a lack of public examples of successful recovery, and a lack of a belief in and an expectation of recovery being the greatest barriers to recovery for people with mental health issues. Health care clinical effectiveness is typically defined in “terms of correctness of diagnosis and appropriateness 1 and efficacy of treatment and care provided.” However, for real recovery, the data no longer supports the dated model of an expert therapist guiding a naïve client towards the light of mainstream society. To become recovery oriented, we need to help “clients” become responsible citizens. We help them by modifying expectations within the environment in which they live. The term “recovery,” means many things to many people. There are comparisons to the human rights/civil rights movements of African-
Page 11 Americans in the 1960s. There is a comparable gap in basic human rights, a lack of a power and voice, under-employment, social problems, lack of peer stewards, learned helplessness, the same token representation, and similar misrepresentation in the media. The current medical model also tends to place responsibility for change predominantly on the individual with the mental illness. In his book, The Careless Society: Community and Its Counterfeits, John McKnight writes, “revolutions begin when people who are defined as problems achieve the power 2 to redefine the problem.” How do we empower individuals, establish a voice, enable responsibility, and achieve steps toward recovery given the environmental barriers? First, we need to acknowledge the expertise that the client brings. As Occupational Therapists, we espouse client-centered practice. We are required to consider and provide interventions related to the interplay among the individual, their environment, and their occupations. This affords the client a level of choice to select the direction of change based on their motivation, their perspective on the problems, and their definition of success. Our goal as therapists is to enable the individual and the family to build confidence, explore options and achieve successes, under the overarching belief that there is an expectation of recovery. Second, we need to believe that all clients can exercise responsibility to establish recovery. The only way to learn responsibility is through responsibility. We can not wait until the client is “cured” or “fixed enough” before we place the expectations of citizenship and the responsibility to create a life. We start as we mean to finish. To achieve this goal, therapists and clients both need to close the gap on how success is defined. A client may come from a place of complete dysfunction and in the process of treatment, progress towards a stable environment with shelter, better mental health and increased social participation. This progress may be perceived as a wonderful success story -- and it is. However, in a full recovery, a “successful” story will include social inclusion in the mainstream community, friendships within and outside the mental health system, and employment. In contrast with our Western society, people with schizophrenia living in “developing” 2
1
Salvatori, P. et. al. Can J Occup Ther. 2008 Feb;75(1):51-60
McKnight, J. (1995) The Careless Society: Community and Its Counterfeits. NY: Basic Press, 1995.
On Our Way: Recovery News - Perspectives Pages
countries appear to have higher quality of life, lower severity of symptoms, greater social 3 inclusion and higher community integration. The difference occurs because the goals and expectations of the client are social inclusion, community integration, and increased quality of life from the beginning of treatment. Recovery is expected through meaningful community engagement and medications, counseling, and support for immediate return to productive roles within their communities. This model stands in contrast with our society and system. At its worst, our system encourages clients to settle for living on a disability pension and accepting a life of poverty. Doing “well” means little more than “avoiding hospital.” The client is expected to be “psychosis/symptom free” before exploring a reclaimed role in society. To change this pattern, we need to strike a balance, trying to find the “optimal challenge” to encourage a life worth living. Even though the Strathcona Mental Health Team in Vancouver is usually committed to the values of recovery and tries to instill hope, our environment, both within the health care system and in our communities, continues to significantly impede success. However, we are making progress. In the Strathcona Psychosocial Rehab Program, we facilitate not only traditional life skills, leisure, and a wellness program. We also introduce clients to other clients who have regained power within our society. I define this power as having the freedom and opportunity to exercise choice based on their strengths, desires, and hopes for their future. At every opportunity, we highlight individual stories of success and encourage these stories to be spread. We try to influence social opinion beyond the person with the mental illness. If possible, we encourage clients to develop leadership skills and to perceive themselves as dynamic and useful citizens. We create a voice for the people targeted for mental health care service. We invest in the relationship by creating a partnership where our clients perceive us as human beings, problem solving together to overcome barriers. Some staff members have been hired specifically for positions requiring a personal, “lived” experience of mental illness. As time progresses, I hope to see more professional staff (Nurses, Occupational 3
Anders, S. Psychiatr Rehabil J. Improving community-based care for the treatment of schizophrenia: Lessons from native Africa. 2003 Vol 27 (1).
Page 12 Therapists, Managers, etc.) who are chosen because of the wisdom that comes with their personal “lived” experience with or supporting a family member with mental health issues. Although the same message may have been stated many times, it often takes trust on a “peer” level for information to have a positive impact. I have found that, in so many cases, the message is far less important than the messenger who gives it. The inherent power differential between a therapist and a client needs to be understood. The power of peer support, family involvement, and the concept of partnering to achieve a goal need to be acknowledged. How do we lead a recovery-oriented system? We create leaders within our client and family population. We provide a space where we, as professionals, can step back and listen. Based on continuous feedback, we work with communities to create windows of opportunity for people with mental illness and their families. We look for the “just right challenge” to demonstrate that we expect recovery and we continue to support citizens in achieving valued roles in the community.
On Our Way: Recovery News Vancouver Acute & Community Mental Health Services
Credits Renea Mohammed, Editor Contributing Writers: Dr. Maggie BenningtonDavis, Simon Davis, Diane Desjardins, Christopher Dodge, Stephen Epp, Susanne Hawkins, Shirley Rogers, Zerom Seyoum, Mike Slade, Enid Symonds and Susan Trapp.