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Mental Health Recovery: What Helps and
What Hinders?
The following comes courtesy of OMH's Doug Dornan:
Mental Health Recovery: What Helps And What Hinders?
A National Research Project For The Development Of Recovery Facilitating
System Performance Indicators
The National Research Project for the Development of Recovery Facilitating
System Performance Indicators is proud to announce the release of Phase One
Research Report: A National Study of Consumer Perspectives on What Helps and
Hinders Recovery (Public Release Date: Mid October 2002).
A team of consumer and non-consumer researchers, nine state mental health
authorities, and a consortium of sponsors are working to operationalize a set
of mental health system performance indicators based on the lived experience
of persons with psychiatric disabilities as to what helps and what hinders
them in their recovery. Phase One of the research project was designed to
identify the resources, processes (such as choice), qualities (such as hope),
relationships, mental health services, and environments that influence
recovery.
This research used a grounded theory approach concerning the phenomenon of
recovery and the ways in which the social environment, including the mental
health system, impacts the process. Consumer/survivors in ten focus groups
across nine states provided in depth knowledge and experience concerning both
the obstacles and the supports for recovery from their general environment and
within the mental health system. The Phase One Research Report conveys the
results of this research including design, cross-site findings, discussion and
implications.
This report significantly contributes to the developing knowledge base on
mental health recovery, in particular, expanding our understanding of the
dynamic, ecological interplay of factors that facilitate or impede recovery.
This report strengthens the foundation from which to develop performance
indicators and evaluation instruments to assess the recovery orientation of
mental health services and systems.
RESEARCH TEAM:
Steven J. Onken, Ph.D.; Jeanne M. Dumont, Ph.D.; Priscilla Ridgway, M.S.W.,
A.B.D.; Douglas H. Dornan, M.S.; Ruth O. Ralph, Ph.D.
PARTICIPATING STATES:
Arizona, Colorado, New York, Oklahoma, Rhode Island, South Carolina,
Texas, Utah, Washington
SPONSORS:
CMHS, Colorado Mental Health Services, Columbia University Center for the
Study of Social Work Practice, HSRI, Missouri Institute of Mental Health, The
Center for Study of Issues in Public Mental Health, NASMHPD, New York State
Office of Mental Health, Oklahoma Department of Mental Health & SAS
To obtain a free copy of Phase One Research Report: A National Study of
Consumer Perspectives on What Helps and Hinders Recovery, contact:
Ieshia Haynie
National Technical Assistance Center for State Mental Health Planning
66 Canal Center Plaza, Suite 302, Alexandria, VA 22314
Phone: (703) 739-9333; Fax: (703) 548-9517
General inquiries:
ntac@nasmhpd.org
Bulk copies of 11 or more are available at $10/copy.
Mental Health Recovery: What Helps and What Hinders?
Executive Summary
Mental Health Recovery: What Helps and What Hinders?
A National Research Project for the Development of Recovery Facilitating
System Performance Indicators evolved from collaborative efforts among a
number of State Mental Health Agencies (SMHAs). These states were interested
in developing a measure related to recovery as one of a set of indicators that
can be used to assess the performance of state and local mental health systems
and providers. The specific aims of this project were to:
 | increase knowledge about what facilitates or hinders recovery from
psychiatric disabilities;
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| devise a core set of systems-level indicators that measure critical
elements and processes of a recovery-facilitating environment; and
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| integrate items that assess recovery-orientation into a multi-state
"report card" of mental health system performance measures, in order to
generate comparable data across state and local mental health systems and
encourage the evolution of recovery-oriented systems. |
This Phase One Report describes the findings of the first specific aim of
the project. Structured focus groups and qualitative research methods were
used with a diverse cross-section of consumer/survivors. Ten groups were held
in nine states to gain knowledge on what helps and what hinders mental health
recovery. All concepts and findings are based, to the maximum degree possible,
on the audio-taped words of participants. The five-person research team, each
with significant recovery research experience, posited at the outset five
important domains of recovery: resources/basic needs,
choices/self-determination, independence, interdependence/connectiveness, and
hope. Themes and data encompassing mental health services staff and the mental
health system as a whole were also analyzed. Research participants, N=115,
comprised a purposive sample that encouraged diversity. Thus, we
systematically elicited insight and knowledge on mental health recovery from a
diverse and broad base of consumer/survivors across the nation.
The research team used a process of qualitative coding, codebook development,
cross coding, and recoding to develop a single set of findings across all of
the groups. After coding each unique response, we compiled the responses
thematically, first according to questions and second according to emergent
themes. These themes include the domains and other emergent themes: basic
material resources, self/whole person, hope/sense of meaning and purpose,
choice, independence, social relationship, meaningful activities, peer
support, formal services, and formal service staff.
While recovery is a deeply personal journey, there are many commonalities in
people's experiences and opinions. The findings we present are comprehensive.
We had to work hard to reduce the 1,000 pages of transcript data to a
manageable set of themes, and some of the richness, nuance, and personal
stories unfortunately are lost in the data reduction processes. In fact,
recovery is facilitated or impeded through the dynamic interplay of many
forces that are complex, synergistic, and linked.
A conceptual paradigm for organizing and interpreting the phenomenon of mental
health recovery is beginning to emerge from the study findings. Recovery is a
product of dynamic interaction among characteristics of the individual (the
self/whole person, hope/sense of meaning and purpose), characteristics of the
environment (basic material resources, social relationships, meaningful
activities, peer support, formal services, formal service staff), and the
characteristics of the exchange (hope, choice/empowerment, independence/
interdependence).
Within this ecological context, basic material resources, a livable income,
safe and decent housing, healthcare, transportation, a means of communication
(e.g., telephone), move people toward recovery. Poverty and the lack of basic
resources undermine a sense of safety and hold people back in their recovery.
Concurrent with basic material needs, people need opportunities and supports
to engage in the responsibilities and benefits of citizenship, of membership
to community. Recovery involves a social dimension, a core of active,
interdependent social relationships being connected through families, friends,
peers, neighbors, and colleagues in mutually supportive and beneficial ways.
Social and personal isolation, poverty, emotional withdrawal, controlling
relationships, poor social skills, immigrant status, disabling health and
mental health conditions, past trauma, and social stigma impede the recovery
journey.
Full citizenship expands beyond social relationships, however. Participants
indicated that recovery is enhanced through engaging in meaningful activities
that connect one to the community. Often this can be achieved through a
meaningful job and career, which can provide a sense of identity and mastery.
Participants also identified other options, such as advancing one's education,
volunteering, engaging in group advocacy efforts, and/or being involved in
program design and policy level decision-making. Participants report high
rates of unemployment, underemployment, and exploitation. Training and
education opportunities are lacking, benefits have employment disincentives,
prejudice and discrimination hamper efforts, and individual wishes and
decisions are disregarded.
When considering both the basic material needs and citizenship dimensions to
recovery, we are struck by how generic and universal the responses were. Just
like any group of American adults, the responses included a compelling belief
in the 'American Dream' of economic opportunity, self-sufficiency, liberty,
and the pursuit of happiness.
Our findings support personhood serving as another critical dimension of
recovery. Participants talked about the internal sense of self, inner
strivings and their whole being (physical, emotional, mental, and spiritual)
as affected by and affecting the recovery process.
They described various personal qualities, attitudes, and conditions that can
help (self-reliance, personal resourcefulness, self-care, self-determination,
self-advocacy, holistic view) or hinder (not taking personal responsibility,
shame, fear, self-loathing, invalidation, disabling health and mental
conditions).
The personhood dimension is also about hope, purpose, faith, expectancy,
respect and creating meaning. Participants described how developing a sense of
meaning, purpose and spirituality as well as having goals, options, role
models, friends, optimism, and positive personal experiences support recovery.
Demeaned dreams, pessimistic staff, poor quality services, discounted
spirituality, poverty, unwanted and long-term psychiatric hospitalization, and
lack of education and information about one's condition and potential
resources destroy hope and act as roadblocks to recovery. All have powerful
negative effects on individuals' self-concept, esteem, and sense of efficacy.
These effects are compounded by mental disorder itself and the associated
stigma (internalized and external), prejudice and discrimination.
Believing that recovery is possible and having this belief supported by others
(friends, family, peers, and staff) helps fuel self-agency (the process of
intentionally living one's life on one's own accord). Participants want to
understand what they are experiencing, they want to be educated, have good
information and actively participate in making important choices. It is also
important to note that some of our findings seem to indicate that certain
cultural affiliations, such as tribal community, may modify the emphasis on
self-agency through activating kinship or tribal mores that stress
interdependency or living for the good of the larger social unit.
When considering the fullness of the personhood and self-agency dimension to
recovery, we are again struck by how such findings speak to universal quality
of life needs and desires. Participants' life journeys began prior to the
onset of mental illness and continue after. Hope advances many participants'
life journeys. Thus, a holistic focus and positive expectancy (regarding
attitudes, beliefs, and goals) on one's own part, on the part of helpers,
within families, and in the media and the broader community can move recovery
forward.
Empowerment is another critical dimension of recovery. The goal of empowerment
becomes one of people gaining power and control over their lives through
access to meaningful choices and the resources to implement those choices. Our
findings document the crucial role that choice plays in empowerment. Having
information on, and access to, a range of meaningful and useful choices and
options fosters recovery. Participants are empowered when they make the
choices regarding where they live, housing, finances, employment, personal
living/daily routine, disclosure, who they associate with, self management and
treatment. Individual participants talked about the empowering experience of
choosing 'how I see myself, my disorder, my situation, my quality of life.'
But for such empowerment to occur, meaningful options must exist and people
must have training and support in making choices, and the freedom to take
risks and fail. Too often quality of life choices seemed outside the realistic
reach of many participants. Options are limited, lousy, or nonexistent.
Participants recounted service providers, professional and family members and
communities that responded through the use of coercion, control, restricted
access or involvement, discrimination, and stigmatization. Independence (not
being subject to the control of others, and not requiring or relying on
others. -Webster's II New Riverside University Dictionary, 1984) also
falls within the empowerment dimension. Participants expressed it as both a
process and goal of recovery.
Independence is achieved through making one's own choices and decisions,
exercising selfdetermination (such as advanced directives), enjoying basic
civil and human rights and freedom, and having a livable income, a car,
affordable housing, etc. Paternalistic responses, lack of respect, involuntary
and long-term hospitalizations, stereotyping, labeling, discrimination, the
risk of losing what benefits and supports one does have, all undermine
independence. Repeated encounters with such experiences instill fear, lack of
confidence, and negative attitudes and beliefs.
Some participants talked of the importance of both independence and
interdependence, reaching beyond the goal of independence to that of embracing
interdependence. Interdependence is a term that implies an interconnection or
an interrelationship between two entities and is used to describe the link of
people to people. Seeking independence and seeking interdependence are not
mutually exclusive.
The mental health self-help and consumer/survivor movement provides referent
power opportunities. The need for a large-scale expansion, funding, support
and availability of peer services, such as peer support, education, outreach,
role models, mentors, and advocates was a common theme across all focus
groups. Participants identified the need for alternative services and
'experienced experts/peer specialists' employed across all levels of mental
health service provision. Limitations in funding, geographical availability,
participation, and leadership development opportunities, as well as lack of
transportation, and controlling and mistrustful professionals hinder peer
support efforts.
The formal service system, and the professionals and staff employed within it,
constitute another dimension that impacts recovery. We clearly see that
progress toward recovery can be supported through the formal system. There
was, however, much more 'hindering' content within our data regarding formal
systems than any other domain.
We must fully acknowledge that the formal system often hinders recovery
through bureaucratic program guidelines, limited access to services and
supports, abusive practices, poor quality services, negative messages, lack of
'best practice' program elements, and a narrow focus on a bio-psychiatric
orientation that can actually serve to discount the person's humanity and
ignore other practical, psychological, social, and spiritual human needs. At
the core of such hindering forces is the operationalization of society's
response to mental illness, that of shame and hopelessness and the need to
assert social control over the unknown and uncomfortable.
Many of our findings lend further support to shortcomings already identified
within the formal system of care. Often these hindering influences are the
unintentional consequences of procedures implemented by well-meaning
authorities in a belief that the practices are in the best interest of
patients. People have basic subsistence needs that 'the safety net' does not
meet. Social welfare and mental health programs are fragmented and difficult
to access. People do not want to have to deteriorate in order to receive help,
nor do they want to lose vital supports when they make progress toward
recovery. Psychiatric services can be experienced as a means of social
control, countering individual efforts of recovery.
The experience of trauma and abuse was also notable across the focus groups.
The impact of the status of the mental health patient comes through in our
findings through the discussion of internalized stigma, the repeated
traumatizations by the system, and the historical trauma of past abuse. The
formal service system and many of its personnel largely overlook how
responding to, and coping with, trauma is a central experience of psychiatric
disorder and thus the system fails to incorporate trauma knowledge in existing
explanations of, and responses to, mental illness. Pivotal in creating a
culture of belonging, safety, openness, participation, citizenship, and
empowerment is the large-scale support of peer services and peer staff, both
independent of and integrated into existing service delivery systems.
Another critical change involves the need to return to the basic core of
helping, a 'therapeutic alliance' the need for positive helping relationships
based on partnership. People do not want to interact with neutral detached
helpers, nor do they want to meet a new professional or paraprofessional each
time they seek help. Opportunity for choice and negotiation in selecting
partnership relationships with a doctor, therapist or case manager were strong
concerns. People desire the collaborative development of individual treatment
plans with full information on the potential benefits and side effects of
medication. Most people sought to continue to be in charge of her or his
treatment or recovery plan to the maximum degree possible and to exercise
choice in all aspects of their lives, sometimes through the use of mental
health care proxies or advance directives. They want to have people care for
them and listen to them and empower them. Respect becomes critical. The whole
focus of the helping relationship should have this value at its core; the
actualization of the individual through self-determination and choice.
Recovery can be construed as a paradigm, an organizing construct that can
guide the planning and implementation of services and supports with people
with severe mental illness. The outlines of a new paradigm recovery-enhancing
system are emerging. Such a system is person-oriented, and respects people's
lived experience and expertise. It promotes decision making and
self-responsibility. It addresses people's needs holistically and contends
with more than their symptoms. Such a system meets basic needs and addresses
problems in living. It empowers people to move toward self-management of their
condition. The orientation is one of hope with an emphasis on positive mental
health and wellness. A recovery-oriented system assists people to connect
through mutual self-help. It focuses on positive functioning in a variety of
roles, and building or rebuilding positive relationships.
The work of Phase One of this project constitutes a rich and complex fabric of
findings for use in formulating future research, including the construction of
evaluation tools to examine mental health system performance as to how well
local and state mental health systems promote or facilitate mental health
recovery. It is clear that the way we configure mental health and social
service policies, formal mental health services and the day-to-day informal
cultures that exist within programs and systems can serve to either promote or
inhibit recovery. The following are key implications of the findings.
| Since persons are at the core of a dynamic interplay among themselves,
other people, the resources available in the environment, and other forces,
mental health services must recognize and allow for self-agency while
bolstering, or at least not undermining, such efforts. Seeing people as whole
persons beyond their labeled identity is integral to recovery.
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| A shift to a recovery orientation will require attention to wellness and
health promotion, not simply attention to symptom suppression or clinical
concerns. Attention must be paid to basic needs in safe and affordable
housing, health care, income, employment, education and social integration.
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| A recovery orientation will require close attention to fundamental rights
and needs. Re-orientation away from coercion requires alternative resources as
well as training.
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| There needs to be a continual evolution in our thinking, and for
development of knowledge concerning recovery among diverse communities. For
example, the balance of autonomy and self-reliance versus group or family
focus may differ in recovery based on such factors as ethnicity and culture.
Special attention is needed for people who have experienced trauma or who have
substance use disorders.
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| Resources for re-educating families, consumers, the professions and
paraprofessional providers, young people, and the public at-large on the
potential for recovery are called for, and will take significant investment.
Stigma and misinformation must be countered through a variety of strategies
(with attention to incorporating active roles for consumer/survivors) that
target many audiences.
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| Hope and empowerment are critical and their relationship to recovery
warrants further research attention.
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| True parity of decision-making power and respect through mutual and
supportive partnership among consumer/survivors, professionals,
administrators, and policy makers can become the basis of collaborative
efforts to design and implement action strategies that will move America's
mental health systems toward a recovery orientation.
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| Adequate resources are
needed to fund and support consumer voice and consumer leadership development. |
Several factors contributed to the limitations of this study. Recruitment
limited representation of age, ethnic and cultural diversity. The recruitment
process in all states entailed self-selection and is not fully representative
of the population of public mental health system recipients. The size of the
focus groups, which exceeded the optimal, may have somewhat limited individual
participant opportunities to share insights and observations. Focus group
methodology limits identification of consensus as well as the themes or
domains that are most or least important.
The long-term goal of this research project is the development of a core set
of systems-level indicators that measure critical elements and processes of a
recovery-facilitating mental health service environment. In Phase Two of this
work, the findings of Phase One will be utilized to comprise a set of
prototype performance indicators. In Phase Three the resulting measure will be
pilot-tested across multiple sites.
Source:
Executive Summary
This 'Mental Health E-News' posting is a service of the New
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people who use and/or provide community mental health services dedicated to
improving services and social conditions for people with psychiatric
disabilities by promoting their recovery, rehabilitation and rights.
To join our list, e-mail us your request and, where appropriate, the name of
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Last Updated on
02/08/05
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