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Recreational therapy can help adult brain injury survivors get back into the community

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360 NCMJ November/December 2001, Volume 62 Number 6
"You know what it is when you open a door you have never seen
before. Betsey has boosted me, given me so much encouragement;
she is making me want to be more independent.”
—A TBI survivor comments on how
recreational therapy services affected her.
How can one describe the impact of traumatic brain injury?
Survivors and family members are rarely prepared to deal with
the medical emergency, with the physical, cognitive, and emo-
tional consequences of the injury, with the cost of treatment,
with the stress of re-establishing life.1 There are a number of
strategies used during the crisis period to help survivors and
those who support them address these consequences. How-
ever, too often we overlook or under-emphasize the way de-
creased social contact, depression, and loneliness create major
challenges to rehabilitation and pose a lifelong threat to overall
health and well-being. We know that during the first two years
after injury, the social support network of survivors decreases
significantly and pre-injury friendships dissolve. This increases
depression and contributes to low self-esteem and anxiety.2 A
significant percentage of survivors of brain injury lose their jobs
and remain unemployed, further decreasing social contact and
relationships.3 As peer support lessens, dependence on the
family may increase, and thus families report that their loss of
social contact is a major problem.4
Many manifestations of brain injury affect functioning and
quality of life. Irritability, impulsivity, decreased spontaneity
and flexibility, and depression are common. They pose signifi-
cant challenges to individuals attempting to re-engage in com-
munity activities and reconnect with their social networks.5
Impaired memory, especially short-term memory, may make it
difficult to remember how to use equipment, or the rules of a
given activity; how to find one’s way around town; or to recall
names and faces. Some individuals have difficulty with fine and
gross motor skills, visual acuity, or deficits in the attention and
concentration skills required for successful participation in
specific activities. Lack of social confidence or inability to
recognize social signals can lead to embarrassing social interac-
tions for the survivor and others.5 In addition, low or fluctuating
energy may be misinterpreted as a lack of motivation or non-
compliance.
Some acquired deficits are addressed during the rehabili-
tation process as patients relearn skills, generalize skills to new
environments, and develop compensatory strategies. However,
the functional skills established during in-patient care can be
lost if individuals do not use those skills after they are discharged.
Social isolation and an increase in unstructured time further
lessen the opportunities to use and maintain skills. Brain-
injured adults say that one of their concerns is “the lack of
anything to do,” and the fact that the survivor and family “receive
little help with figuring out how to make use of all the free time.”
Recreation for Rehabilitation
Recreational therapists are “a profession of specialists who
utilize various methods to promote the independent physical,
cognitive, emotional, and social functioning of persons disabled
as a result of trauma or disease by enhancing current skills and
facilitating the establishment of new skills for daily living and
community functioning.”6 Recreational experiences and activi-
ties become purposeful interventions to help change, treat, or
otherwise ameliorate the effects of illness and disability so that
individuals achieve optimal functioning, independence, life
satisfaction, and quality of life.7
The processes used by recreational therapy are similar to
Recreational Therapy Can Help Adult Brain
Injury Survivors Get Back into the
Community
Jan S. Hodges, PhD, Karen Luken, MSRA, and Betsey Zook, MA
Dr. Hodges is at the University of North Texas; Ms. Luken and Ms.
Zook are at the University of North Carolina in Chapel Hill.
Address correspondence to Ms. Luken at CB 3185, Evergreen
House, UNC-CH, Chapel Hill, NC 27599-3185. Tel. 919/962-1222.
NCMJ November/December 2001, Volume 62 Number 6 361
those of other health professions: referral for services, assess-
ment, development of individualized treatment plans specify-
ing relevant goals and measurable objectives, selection of pur-
poseful interventions, evaluation of progress, and discharge and
transition. While in a recreation activity, the patient may focus
on the activity, but the recreational therapist is focusing on the
treatment goals and outcomes that will result from the interven-
tion. Many recreational therapy interventions take place in “real
world” settings like restaurants, malls, and libraries.
Recreational therapy is not just fun and games. The skills
learned and strengthened in recreational experiences carry over
to other life domains (jobs, support networks, and school).
Recreational therapy provides an important service in meeting
the needs of persons with brain injuries. The outcomes achieved
through satisfying recreation experiences include better jobs,8
reduced effects of disability, bolstered self-confidence and self-
esteem,7,9 improved self-determination, friendships, and social
supports,10 and reduced reliance on the health care system.7
Recreational therapy services and supports are available through
hospitals, rehabilitation facilities, community recreation pro-
grams, private organizations like the Arc, and governmental
agencies like the NC Independent Living Services.
A Model Project
Services and Supports for Persons with Brain Injury (SSPBI)
was the name of a three-year grant from the US Department of
Education, Office of Special Education and Rehabilitation
Services, to the Department of Recreation and Leisure Studies
at the University of North Carolina at Chapel Hill. SSBPI
sought to create and refine community-based, post-discharge
rehabilitation support for persons with brain injury living in
predominantly rural areas of North Carolina. It also sought to
provide a model of how integration into community activities
could promote lifelong rehabilitation and development. The
project’s components (individual recreational therapy services,
technical assistance to brain injury support groups, and training
for community recreation providers) had the following goals:
!Decrease the social isolation of those with brain injury,
!Strengthen the skills that contribute to successful
community life,
!Help peer support groups use computer technology to
meet social and educational needs of members,
!Improve the responses of communities to individuals
with brain injury.
Project participants came from three non-metropolitan
North Carolina communities. Candidates for participation were
suggested by the North Carolina Brain Injury Association, Area
Programs for Mental Health, Developmental Disabilities, and
Substance Abuse Services, Vocational Rehabilitation, and by
self-referral. To be included in the project, persons had to have
a history of a brain injury, reside in one of the targeted commu-
nities, and have a personal interest in participating.
Twenty men and three women, 24-59 years of age, partici-
pated in the project; 16 were white and seven were black. Most
participants had severe injuries that had occurred more than
three years before they enrolled in the project. Less than 10%
of participants lived alone; approximately 40% lived with a
spouse, and 50% lived with family or received residential
support from paid staff.
A certified therapeutic recreation specialist (CTRS) met
weekly with participants for 6-8 months. Sessions were con-
ducted in the participant’s home or in a community location
appropriate to the participant’s goals and agreed upon by the
participant and CTRS. From the first session, the CTRS
worked to build a therapeutic alliance and partnership with the
participant, based on meeting that person’s individual goals.
Many of the participants had come to think that meaningful
community activity was impossible or not worth the trouble, so
getting them to dream—to think What if I could?—was difficult,
but important; only by doing so could the participant and
therapist develop a plan for re-entering or becoming more
involved in the community. The assessment format, modified
from earlier projects conducted by the Center for Recreation and
Disability Studies at the University of North Carolina-Chapel
Hill, reflected principles of person-centered planning and self-
determination. A structured interview process (Table 1), often
requiring two to three sessions to complete, identified life goals,
perception of abilities, current social and community resources,
current activity levels, health and safety concerns, and potential
barriers for achieving goals.
Recreational therapy has the great advantage that activi-
ties are chosen that are personally meaningful to and desired by
the participant. The process allows each person to use strengths
already possessed to facilitate development of new ones—while
simultaneously having a good time—and even to do things
previously thought impossible. Because the intervention was
time-limited, not all dreams could be addressed; but the most
important and appropriate ones could be focused upon. Deci-
sions about selected goals were based on the participant’s
desires, the scope of practice of the CTRS, and the probability
of accomplishing the goal during the project’s life span. For
example, a participant might dream of feeling “normal,” defined
by the participant as, “able to come and go when I want and hang
Table 1. Sample assessment questions
!Tell me about the things you want most out
of life.
!If you could change anything about your
recreation, what would you change?
!Does anything get in your way of participating
in your recreation interests?
!Are you satisfied with how you get along with
other people?
362 NCMJ November/December 2001, Volume 62 Number 6
out with people I choose.” The short-
term community integration goal might
be to develop or strengthen skills needed
to participate independently in com-
munity activities, or to initiate and main-
tain social contacts.
In implementing the process, the
CTRS outlined a structure of begin-
ning, intermediate, closing, and con-
tinuation steps toward the ultimate goal
(Table 2). The strategy was completed
by soliciting responses to prompts such
as, “What do we need to do first to
accomplish this goal? What do we need
to do next? What resources and sup-
ports will you need to continue after we
are no longer working together?”
Community integration was a pri-
mary mechanism by which participants
achieved their goals, and at times it was
the intended outcome. To achieve ac-
cess to community activities, partici-
pants needed to learn new compensa-
tory skills such as developing daily rou-
Table 2. Examples of goal and strategy
Goal : To participate in rewarding social activities in the community
at least 3-4 times per week, and to be able to independently
schedule and plan for ongoing participation.
Strategy: Beginning steps
! Identify possible activities
! Identify local resources
! Research transportation options
Intermediate steps
! Select preferred activities
! Sample community activities
! Choose activities to continue
! Develop or strengthen activity and compensatory skills
! Begin scheduling activities weekly
Closing steps
! Maintain weekly schedule
! Increase independence for ongoing participation
Additional steps
! Involve social network in ongoing plans as needed
She continued to attend church on Sundays with her husband.
Her husband worked full-time, so Loretta spent most of
her day at home alone. She was receiving outpatient mental
health counseling for depression, but some days she would not
even get out of bed. On good days she would move to the living
room to watch TV, but stayed in her sleeping clothes. Her days
held few productive tasks. She was independent in self-care,
and walked with a four-point cane, but could not drive. She
reported difficulties with memory, and with organizational
tasks. Although Loretta described herself as a “people person,”
she admitted to minimal self-confidence in social settings. For
the first month of sessions with the CTRS, Loretta requested
that a friend be present to help her express herself accurately.
Loretta described her life goals as becoming able to give to
and care for people again. Together, the CTRS and Loretta
agreed that her project goal would consist of increasing partici-
pation in meaningful activities with people outside of her home.
Loretta and the CTRS brainstormed together, seeking activi-
ties that might match her interests and desire to give back to
others. The CTRS used role-playing to help Loretta figure out
how to make informational phone calls to community agencies,
and prompted her to write down questions before calling, as well
as the answers to her questions. Homework assignments con-
sisted of making informational inquiries to community agencies,
which enabled her to develop independence and broadly useful
skills. The recreational therapist taught Loretta to use rural
public transportation systems in her area, to apply for reduced
fares, and to schedule curb-to-curb van service for travel across
a multi-county area.
tines, using weekly calendars, and recording questions and
answers over the telephone. The CTRS broke down the global
tasks into small steps that could be accomplished incrementally
using written outlines. Repetition, the key to the learning
process, took the form of repeating similar routines during each
session and giving “homework” tasks to be completed between
sessions. In addition, the CTRS provided brain injury educa-
tion and strategies for accommodating the participants’ goals
and needs in local recreation and community agencies. During
the final weeks of participation, the CTRS “faded” into the
background, allowing participants to assume greater responsi-
bility and gain control over their schedules, activities, and social
interactions.
A Case Example
Loretta, a 58-year-old black woman, lives with her husband in
a rural North Carolina community. She has grown children, and
previously worked as a care-giver for residents of a state center
for the mentally retarded. About three years before she partici-
pated in the project, she was severely brain-injured in a motor
vehicle accident. Before the accident, Loretta had been a
socially active person, involved with church bible study, choir,
and other activities. When the CTRS began working with
Loretta, she was spending most of her time at home watching
religious television programs. She did maintain telephone con-
tact with family members living in other states, and occasionally
church members would come to visit or to take her to bible study.
NCMJ November/December 2001, Volume 62 Number 6 363
As Loretta gained confidence, the CTRS prompted her to
make appointments with various community agencies to deter-
mine whether they were “a good match for her.” Loretta then
toured selected facilities (the local senior center, the library, and
the YMCA), asking the questions that she had drafted before
the meeting, and evaluating the suitability of the facility. Loretta
chose to volunteer for a children’s program at the local library,
attend weekly bible study at the senior center, and participate
in water aerobics three times a week at the YMCA. Loretta
attended a computer skills workshop established by SSPBI, and
she scheduled time every week to keep up with the Brainspot
(www.thebrainspot.com) message board and to email new
cyber-friends. The CTRS introduced the use of a daily planner
and routines to coordinate her schedule, and eventually ar-
ranged to meet Loretta at selected community sites, reinforcing
Loretta’s use of the public transportation system.
As Loretta’s independence grew, the CTRS shifted to-
ward monitoring, mentoring, and helping with problem-solving.
Today Loretta independently maintains an active schedule,
spending four to six days per week out of her home and
participating for almost 40 hours per week in activities she finds
meaningful (previously, she had been spending only one hour
per week out of her home). She has been able to transfer her new
skills and confidence to new activities and environments.She
also shows increased self-confidence in her leadership role in the
weekly computer group and online discussion board.
Outcomes and Implications
During SSPBI, the recreational therapist strove to have partici-
pants develop skills that would allow them to participate in
activities of their choice, sustain increased levels of indepen-
dence, increase their confidence, and improve overall life satis-
faction. Across the entire group of participants, depressive
symptoms diminished, and there were positive changes in peer
relations, increased activity levels, increased time out of bed, and
increased involvement in a variety of community and social roles,
including volunteering.
These positive outcomes are pertinent to success in recre-
ation as well as in other life domains like employment and
education. Because participants had more confidence in gath-
ering information by phone about recreation opportunities, they
could make calls about employment and where to find support
for vocational rehabilitation. Some began to use public transpor-
tation to reach community recreation resources, which also
expanded their employment and social opportunities.
It is critically important that rehabilitation services address
the challenges faced by persons with disabilities that persist
after intensive, facility-based rehabilitation ends. Services must
build on and strengthen each person’s abilities, interests,
strengths, and needs. Recreational therapy is well suited to this
mission because it embraces a definition of health that includes
not just the absence of illness but also the enhancement of
physical, cognitive, affective, and social development.6 It pro-
motes independence and quality of life12 for persons with brain
injuries. Professionals serve people where they live,8 provide
opportunities to use and master skills,9 and promote universal
design and access. The SSPBI project has successfully demon-
strated that it is possible to provide cost-effective services that
meet the individual psychosocial needs and desires of consum-
ers and families.13
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4 Jacobs HE, Blatnick M, Sanhorst JV. What is lifelong living and
how does it relate to quality of life? J Head Trauma Rehabil
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5 Estes R, Magrath M. Stressed out? a caregiver’s guide. Outlook
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... The full texts of 15 potentially eligible articles were retrieved, with nine reports confirmed as meeting eligibility criteria, and data were extracted independently by the raters. The six reports that were excluded were due to the following reasons: inclusion of mixed samples of either disabled (Anderson, Schleien, McAvoy, Lais, & Seligmann, 1997) or acquired brain injury (Gemmell & Leathem, 2006) populations without providing separate data for the TBI subset; participants did not sustain a TBI (Lancioni et al., 2011); case report without quantitative data (Hodges, Luken, & Zook, 2001;Kunstler & Sokoloff, 1993); intervention did not involve leisure/social activity (Johnson & Davis, 1998). The reference list includes the nine eligible articles identified from the searches (denoted with an asterisk). ...
... A recognised approach to delivering interventions in this (and other) clinical populations is the therapeutic recreation model, whereby a clinical approach is used to assist the person to overcome barriers (either impairments or disability as a direct consequence of the injury, and/or those ubiquitous personal and environmental hindrances that are not necessarily injury-related). One programme, 'What if I could?', which was excluded from the systematic review because of absence of empirical data, is described by Hodges et al. (2001). Participants undertook weekly sessions with a certified recreational specialist for 6 to 8 months. ...
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... However, some evidence suggests that recreation-based interventions used in inpatient psychiatric rehabilitation help develop social skills, build relationships, prepare for community reintegration, and reduce social isolation (Biancosino et al., 2010), which fulfills PORT's recommendations to some degree (Kreyenbuhl et al., 2010). Currently, the research suggests that RT can align with PORT recommendations through community reintegration (Crosse, 2003;Hodges, Luken, & Zook, 2001;Smith et al., 1996;Snethen et al., 2012), vocational training (Cook & Razzano, 2000;Lehman, 1995), skills training (Hood & Carruthers, 2002;Kopelowicz, Liberman, & Zarate, 2006), CBT (Carruthers & Hood, 2004), and family-based services (Heyne & Anderson, 2012;Pitschel-Walz et al., 2015). ...
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Life long living addresses the challenges that persons who have experienced a traumatic brain injury face following formal rehabilitation. Each program is unique according to personal abilities and resources, with consumer control essential for program success. Residential placement is not synonymous with lifelong living, and many supports can be developed from existing community services, with specialized programs used as necessary. Because of the length of most programs, funding is often a formidable challenge, and creative approaches are required to moderate costs. The ultimate success of lifelong living programming is measured by the lack of institutionalization that it experiences over time and how it helps individuals improve the control and quality of their lives. (C) Williams & Wilkins 1990. All Rights Reserved.
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Behavioral alterations due to brain damage that compromise the quality of patients' lives also affect the well-being of patients' families. Family distress following head injury has been well-documented. With other cerebral disorders, similar emotional burdens and family disruptions are experienced by the immediate family. Most families suffer many of the core problems arising from the patient's dependency and cognitive inefficiency, and from social reactions to the patient's disability. Moreover, emotional disturbances and executive disorders associated with the site or nature of the lesion(s) affect patients' interaction with their families differentially creating distinctive patterns of family burden. Specific family problems may be relieved through education, counselling, and emotional support.
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