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DEVELOPMENTAL DISABILITIES

RESEARCH REVIEWS 15: 159 – 166 (2009)

A REVIEW OF FAMILY INTERVENTION GUIDELINES


FOR PEDIATRIC ACQUIRED BRAIN INJURIES

Wesley R. Cole,1* Stephanie K. Paulos,1,2 Carolyn A.S. Cole,1,2 and Carol Tankard1
1
Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland
2
Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland

Pediatric acquired brain injury (BI) not only affects the child with adjusting to new roles [Lezak, 1986; Rivara et al., 1992; Ergh
the injury, but also greatly impacts their family. Studies suggest there are et al., 2002; Gan and Schuller, 2002; Wade et al., 1998,
higher rates of caregiver and sibling psychological distress after a child in
the family has sustained a BI. Also, family functioning after BI impacts
2006a,b]. Further, parents of children with BI also have more
the child’s recovery. In reviewing the literature, we identified seven theo- difficulty than parents of children without BI expressing their
retical clinical guidelines for working with families of children and adoles- emotional and personal needs, placing them at even higher
cents with BI. These clinical guidelines are as follows: (1) select develop- risk for persistent and worsening difficulties [Wade, 2006]. In
mentally appropriate interventions, (2) match the intervention to the fact, prospective investigations have documented continued
family, (3) provide advocacy, (4) provide injury education, (5) focus on
family realignment, (6) appropriately adjust the child’s environment, and family dysfunction among families of children with severe
(7) provide skills training to the family and child. The existing research on traumatic brain injury (TBI) for 3 or more years postinjury,
family interventions for BI is reviewed within the context of these theo- despite available rehabilitation resources [Wade, 2006; Wade
retical guidelines, and the empirical support for each guideline is subse- et al., 2006b]. Max et al. suggest negative family functioning
quently evaluated using specific criteria for empirically supported
treatments. Unfortunately, very few randomized controlled studies exist,
predicts the development of new psychological disorders in
and continued research is needed to classify all clinical guidelines as children with BI [Max et al., 1997, 1998a,c,d, 2000, 2006].
‘‘efficacious.’’ In addition, continued research will aid in informing On the other hand, a supportive family environment following
professionals of specific approaches to utilize when working with a BI can buffer the family from additional stress and burden, as
family of a child with BI. Currently, clinicians and researchers can turn well as improve the child’s adaptation to the injury [Wade,
to the existing clinical guidelines to help address the numerous
barriers posed by implementing and studying family interventions for 2006]. Additionally, care of the child and family following
pediatric BI. ' 2009 Wiley-Liss, Inc. pediatric BI can serve an important role in the functional
Dev Disabil Res Rev 2009;15:159–166. recovery of the child as well as the psychological health of
caregivers and family members [Ylvisaker, 1998; Cavallo et al.,
Key Words: brain injury; pediatric brain injury; family interventions; fam-
2005].
ily stress; injury education Investigators have established that interventions for pedi-
atric BI should target the family because changes in one fam-
ily member will affect the entire family system [Maitz and
Sachs, 1995; Gan and Schuller, 2002; Laroi, 2003; Cavallo
et al., 2005; Gan et al., 2006]. However, very few evidence-
supported interventions have been developed to target the

P
ediatric acquired brain injuries (BI) often result in a
wide range of persistent cognitive, behavioral, social, entire family [Zitnay et al., 2008]. In addition, few of the
and functional difficulties for the child [Fletcher et al., existing family interventions for pediatric BI have been eval-
1990; Fay et al., 1994; Max et al., 1998a; Taylor, 2004]. uated via randomized controlled studies (RCT). To date, most
Symptom expression is highly variable and problems may per- research involves case studies, small ‘‘n’’ studies, or exploratory
sist for years, adversely impacting not only the youth (i.e., investigations. Boschen et al. [2007] review of literature on
child or adolescent) with a BI, but also the youth’s caregivers family interventions after pediatric BI and other chronic con-
and siblings [Rivara et al., 1996; Wade et al., 2002]. Accord- ditions indicates the extant data does not yet identify a gold
ing to Ylvisaker [1998], pediatric BI should be considered an standard intervention for families of youth with BI. However,
injury to the individual and the family, as families are left
extremely vulnerable to stress and distress after a child has sus-
tained a BI.
Increased family dysfunction following pediatric BI has
*Correspondence to: Wesley R. Cole, Department of Neuropsychology, Kennedy
been clearly documented in the literature [Gan et al., 2006; Krieger Institute, 700 N. Broadway, Baltimore, MD 21207.
Wade et al., 2006a,b; Wade, 2006; Stancin et al., 2008]. E-mail: colew@kennedykrieger.org
Numerous issues have been reported in studies of caregivers, Received 24 February 2009; Accepted 22 March 2009
Published online in Wiley InterScience (www.interscience.wiley.com).
including family strain, depression, emotional difficulties, bur- DOI: 10.1002/ddrr.58
den, anxiety, social isolation, loss of income, and problems
' 2009 Wiley -Liss, Inc.
Table 1. Description of Chambless’ Criteria for Evidence-Supported Treatments
(EST) [Chambless and Hollon, 1998]
Classification Required Empirical Evidence

Efficacious Two well controlled between group design experiments or a large series (N > 9) well controlled single case design
experiment. Studies are conducted by at least two independent research groups using a treatment group, a treatment
manual, and defined sample characteristics.
Probably efficacious Superior effectiveness compared to a control group shown in at least two studies conducted by the same group of
researchers. Small series (N > 3) of a well controlled single case design experiment.
Promising, but not yet validated One well controlled experiment showing treatment is not harmful. Two or more well controlled experiments with
small numbers. We also use this classification for guidelines that have a strong theoretical basis but no well controlled
experiments.
Probably ineffective Treatment results reveal null or harmful outcomes.

numerous investigators have independ- including linking the family to to determine the appropriate classifica-
ently identified guidelines that should community resources and tion level is summarized in Table 1.
be considered when providing family organizations.
interventions for pediatric BI [Conoley 4. Injury Education: Provide com- DEVELOPMENTAL
and Sheridan, 1996; Waaland, 1998; prehensive education regarding CONSIDERATIONS
Ylvisaker, 1998; Wade, 2006]. Unfortu- the youth’s injury. When designing interventions for
nately, these guidelines are primarily 5. Family Realignment: Encourage families of youth with BI, it is impor-
based on limited quantitative evidence, and support reorganization of tant to consider the youth’s develop-
isolated case studies, anecdotal clinical the family system to realign in mental stage and how this may differen-
experience, or family interventions for healthy and positive ways. tially impact future outcomes and their
conditions other than BI. 6. Adjusting the Child’s Environ- response to intervention [Waaland,
In an attempt to advance the de- ment: According to the identi- 1998; Wade, 2006]. Previously, it was
velopment of family interventions for fied goals for treatment, facili- believed that children injured at young
pediatric BI, we propose a comprehen- tate adjustments in the home, ages may have better outcomes due to
sive set of theoretical clinical guidelines school, and community envi- the brain’s plasticity and ability to ‘‘reor-
for working with families of youth with ronments that reduce the op- ganize’’ after insult. However, current
BI. It is our hope that these clinical portunity for behavior prob- literature suggests that children who
guidelines help guide future research lems and conflict to emerge sustain a BI are at greater risk for nega-
and continue to be refined through sys- and to support the youth’s tive outcomes, such as cognitive, behav-
tematic research. We conducted a thor- ongoing recovery from injury. ioral, social, and vocational outcomes,
ough review of previously proposed 7. Skills Training: Use skills train- than adults who sustain a BI [Anderson
guidelines as well as current literature of ing to foster coping skills, et al., 2006; Donders and Warschausky,
interventions for pediatric BI and sev- problem solving, and positive 2007; Hessen et al., 2007]. Further,
eral related adult studies of family inter- communication as well as to injury during early childhood and ele-
ventions for BI. Similarities and themes decrease sense of burden. mentary years is often associated with
from this body of literature were identi- worse outcomes than injury in adoles-
In addition to introducing these theo-
fied and a cohesive and comprehensive cence [Donders and Warschausky,
retical clinical guidelines, we seek to
set of theoretical clinical guidelines for review the current pediatric BI litera- 2007]. BI at a young age may disrupt
working with families of youth with BI ture within the context of these pro- the acquisition of prerequisite skills that
was created. In total, seven theoretical posed guidelines. In this review, we later development depends on, or the
clinical guidelines for professionals to evaluate the current empirical support child may experience increased difficul-
consider when working with families of for each guideline by using Chambless’ ties as they age and environmental de-
criteria for evidence supported treat- mands increase in complexity [Donders
youth with BI were derived. The clini-
ments [Chambless and Hollon, 1998]. and Warschausky, 2007].
cal guidelines are as follows:
In 1999, these criteria became the gold The unique challenges of various
1. Developmental Considerations: standard in evaluating psychological developmental levels will impact the
Recognition of how the injured interventions by the American Psycho- identified goal for treatment. For exam-
youth’s developmental stage logical Association’s Clinical Psychology ple, if developmentally appropriate,
would present unique chal- Division (Division 12) [Chambless and treatment expectations may use cogni-
lenges and alter the needs and Ollendick, 2001]. In addition, these cri- tive strategies rather than behavioral
foci of intervention. teria have also become internationally strategies for skills training or for
2. Match the Intervention to the incorporated into the promotion of increasing functional independence
Family: Individually tailor and intervention awareness. The Chambless [Waaland, 1998]. Also, interventions
match the intervention to criteria identify levels of empirical evi- may need to shift their focus from rein-
meet the family’s needs and dence required for treatments to be tegration of the child into the family to
level of functioning. considered as efficacious, probably effi- reintegration of the child into school.
3. Provide Advocacy: Provide advo- cacious, promising but not yet validated, Further, the demands of the school sys-
cacy for the family via per- and probably ineffective. The level of tem may vary dramatically from grade
formance of case management supporting empirical evidence required to grade [Waaland, 1998; Ylvisaker,
160 Dev Disabil Res Rev  FAMILY INTERVENTION GUIDELINES FOR PEDIATRIC ACQUIRED BI  COLE ET AL.
Table 2. Summary of the Clinical Guidelines for Family Interventions for Pediatric BI and the
Chambless Classification Each Guideline Meets Based on Existing Literature
Clinical Guideline Description Classification Supporting Literature

Developmental Recognition of how the developmental Promising, but not yet [Waaland, 1998; Ylvisaker, 1998; Wade,
considerations stage of the child with the injury would validated 2004; Wade et al., 2006, 2006a,b, 2008]
present unique challenges and alter the
needs and foci of intervention.
Match the intervention Provide family interventions for brain injury Promising, but not yet [Max et al., 1997, 1998b; Waaland, 1998;
to the family that are individually tailored to the validated Ylvisaker, 1998; Kreutzer et al., 2002;
family’s needs and level of functioning 2006; Wade, 2006; Boschen et al., 2007]
Provide advocacy Perform case management including linking Probably efficacious [Conoley and Sheridan, 1996; Albert et al.,
the family to community resources and 2002; Leith et al., 2004; Boschen et al.,
organizations. 2007; Glang et al., 2007]
Injury education Family interventions for brain injury should Efficacious [Conoley and Sheridan, 1996; Kosciulek,
begin with comprehensive education 1997; Waaland, 1998; Ylvisaker, 1998;
regarding their child’s injury Kreutzer et al., 2002; Leith et al., 2004;
Wade, 2006; Boschen et al., 2007]
Family realignment Encourage and support reorganization of the Promising, but not [Conoley and Sheridan, 1996; Waaland,
family system. yet validated 1998; Ylvisaker and Feeney 1998; Laroi,
2003; Swift et al., 2003; Wade et al.,
2003; Leith et al., 2004; Stancin et al.,
2004; Wade et al., 2004, 2006a,b; Gan
et al., 2006; Wade, 2006; Sambuco et al.,
2008]
Adjusting the child’s Facilitate adjustments in the home, school, Probably efficacious [Feeney et al., 2001; Ducharme et al., 2002;
environment and community environments that reduce Ducharme, 2003; Gardner et al., 2003;
the opportunity for behavior problems Leith et al., 2004; Braga et al., 2005;
and conflict to emerge and to support Ylvisaker, 2005]
ongoing recovery from injury.
Skills training Foster coping skills, problem-solving and Probably efficacious [Conoley and Sheridan, 1996; Kinsella
positive to communication. Lend et al., 1999; Stancin et al., 2002;
emotional support to help reduce sense of Verhaeghe et al., 2004; Waaland, 1998;
burden and stress. Wade et al., 2001, 2004, 2005, 2006a,b,
2008]

1998]. In general, it is important to developmentally appropriate family comprehensive approach which addresses
consider the impact of the injury on interventions for pediatric BI does not both preinjury dysfunction as well as
ongoing development, especially as the exist. However, given what we know recently emerged concerns. On the other
child approaches age-expected develop- about the impact BI can have on a hand, families who show high levels of
mental milestones. These milestones child’s development and the differing preinjury functioning may only require
should be anticipated to help the child needs of children and families at various interventions exclusively addressing
acquire the new skill. Also, interven- stages of development, this guideline is injury-related concerns [Max et al.,
tions should be adjusted as the child within Chambless’ ‘‘Promising, but 1997, 1998b, 2006].
achieves various milestones or new not yet validated’’ classification (see In an attempt to deliver family
interventions added to address issues Table 2). interventions that are clinically appro-
that arise if the child fails to fully ac- priate, researchers and clinicians should
quire a new developmental skill [Waa- MATCH THE INTERVENTION individually tailor treatment to the fam-
land, 1998]. TO THE FAMILY ily’s needs [Waaland, 1998; Wade, 2006;
Wade et al. have implemented The uniqueness of postinjury chal- Boschen et al., 2007]. Implementation
family problem-solving interventions, lenges each youth with BI and their fami- of a carefully planned and individually
discussed in greater detail later, with lies face presents a sizeable challenge to designed treatment program for families
both school-aged children and adoles- conducting family interventions and can address each youth and family’s
cents. The content of these interven- research. Various individual differences unique presentations and characteristics.
tions was designed to be age-appropri- will affect intervention needs, such as the Professionals providing family interven-
ate for the target age groups. Results heterogeneity of injuries, varying levels tions must consider the family’s prein-
suggest that in both age groups, the of subsequent disability, differences in the jury functioning, the presence of sib-
intervention was well received by fami- time and amount of recovery, and the de- lings and the impact the injury has had
lies and youth, and positive outcomes velopmental level of the child at the time on siblings, the family’s perceptions of
were seen in desired behavioral, cogni- of injury. Also, every family is expected the demands they face and their resour-
tive, and family-systems domains [Wade to respond differently to their child’s ces for meeting these demands, the
et al., 2004, 2006a,b, 2008]. Wade et al. injury, suggesting treatment cannot be existing structure and hierarchy of the
successful adaptation of an intervention conceptualized and administered using a family, the family’s readiness for change,
approach for various age groups pro- ‘‘one size fits all’’ approach. For example, and their access to services.
vides support for making interventions research suggests families with lower lev- The need to design individualized
developmentally appropriate. Unfortu- els of interpersonal functioning prior to family interventions makes it difficult to
nately, systematic research regarding their child’s injury likely require a more standardize and systematically study such
Dev Disabil Res Rev  FAMILY INTERVENTION GUIDELINES FOR PEDIATRIC ACQUIRED BI  COLE ET AL. 161
interventions [Boschen et al., 2007]. complications posed by the heterogene- the areas of effectively applying educa-
However, standardized and carefully ity of pediatric BI. This approach may tional advocacy skills, increased knowl-
structured family interventions that plan also help families feel more invested in edge of educational advocacy, and
for addressing commonly encountered the treatment process, increasing the improvement in parents’ attitudes
problems after BI can be highly valuable likelihood of treatment compliance and regarding their ability to advocate for
[Kreutzer et al., 2002]. Therefore, com- follow-through. However, currently this their child in the educational setting.
prehensive treatments that are general clinical guideline is at a primarily theo- Although this was a RCT, the sample
enough to encompass common chal- retical basis of development, with size was relatively small and homoge-
lenges that typically arise postinjury researchers suggesting tailoring inter- nous, which limits the generalization of
while being specific enough to meet ventions be considered in future studies. these results. However, their approach
the family’s individual needs should be As such, because empirical support is provides both advocacy and concrete
the goal of family intervention develop- presently lacking, this guideline meets skills training, consistent with current
ment. The common challenges families Chambless’ criteria of ‘‘Promising, but clinical guidelines, and uses an innova-
face after pediatric BI include: not yet validated’’ (see Table 2). tive treatment delivery model that may
help reduce the access to services bar-
1. BI impacts everyone in the
PROVIDE ADVOCACY rier many families face. Providing advo-
child’s family, and thus the nature
Some researchers have stressed the cacy appears to be ‘‘Probably Effica-
of intervention should focus on
importance of professionals advocating cious’’ (see Table 2) though additional
the entire family system.
for families of youth with brain injuries investigations of this intervention are
2. Because of the nature of injuries,
[Conoley and Sheridan, 1996; Leith warranted.
there are particular vulnerabilities
et al., 2004]. In particular, professionals
in cognitive, social, behavioral,
are encouraged to provide case manage- INJURY EDUCATION
and academic domains.
ment and connect families with com- Most professionals recommend
3. Particular populations of youth
munity resources and appropriate that family interventions for pediatric
are at increased risk for BI, es-
organizations. Conoley and Sheridan BI should begin with providing com-
pecially TBI, and families with
[1996] found that families’ sense of bur- prehensive education to the family
poorer preinjury functioning
den and stress were reduced when pro- regarding the youth’s injury [Conoley
are at greater risk for poorer
fessionals performed case management, and Sheridan, 1996; Waaland, 1998;
outcomes after injury.
as it promotes familial adjustment to a Ylvisaker, 1998; Leith et al., 2004;
4. Family members often go
child’s injury. Wade, 2006]. In a recent review of the
through stages of grieving as
Other researchers have also investi- literature of family interventions follow-
they mourn the loss of the
gated the importance of advocacy for fam- ing pediatric BI and other chronic ill-
child they knew and cope with
ilies of youth with BI. Although Boschen nesses, Boschen et al. [2007] found that
the changes in their expecta-
et al.’s [2007] conclusions were limited by the leading interventions were educa-
tions for the child.
the methodology and marginal results of tional and informational in nature. The
5. Injury education is critical as
existing studies, they suggest that advocacy numerous educational interventions
well-informed families have
may facilitate increased family access to reviewed showed increased caregiver
better outcomes.
services, delivery of additional education knowledge of the youth’s condition as
6. The majority of long-term
to caregivers, and addressing of otherwise well as decreased misplaced anxiety in
rehabilitation responsibility falls
ignored concerns. Studies of adults with caregivers. In addition, educationally
on the family. [adapted from
BI suggest that providing a social work liai- based interventions were also found to
Kreutzer et al., 2002; Ylvi-
son to caregivers of individuals with BI af- be associated with reductions in care-
saker, 1998].
ter hospital discharge has benefits in reduc- giver stress, burden, and fear for the
Wade [2006] proposed creating module- ing caregivers’ sense of burden, increasing future. Overall, this is an area of pediat-
based family interventions that target caregivers’ life satisfaction, and helping ric BI that has received a significant
such commonly encountered difficulties. caregivers feel increased mastery over reha- amount of focus, and meets Chambless’
This design approach allows for stream- bilitation outcomes [Albert et al., 2002]. criteria of ‘‘Efficacious’’ (see Table 2).
lined design and delivery while maintain- Glang et al. [2007] investigated an Conoley and Sheridan [1996]
ing flexibility to tailor the intervention to educational advocacy intervention pro- encouraged clinical professionals to pro-
the family’s readiness for change as well as gram where parents of children with BI vide families with information that
their goals for treatment. Other research- were taught educational advocacy skills furthered their understanding of the
ers have also proposed methods for via an innovative CD-ROM based pro- extent and nature of the youth’s injury,
implementing module-based family gram. This intervention was created potential impact of the injury on sib-
interventions. Waaland [1998] presented from the text-based Family Advocacy lings, development of realistic expecta-
a treatment approach for families of Skills Training program as well as clini- tions and goals for the child, and the
youth with BI using Zarski and Depom- cal experience, and consisted of four creation and utilization of effective
pei’s [1991] ‘‘matrix model’’ of family key sections: (1) preparing for a meet- problem-solving in the family. In a
counseling. In this model, family needs ing, (2) active listening with professio- study featuring 87 primary caregivers
are conceptualized as falling into one of nals, (3) advocating and specifying a (i.e., mothers and spouses) of adults
four levels, whereby each level reflects request, and (4) negotiating and work- with BI, Kosciulek [1997] found that a
the degree of distress experienced by the ing toward a solution when parents and family’s schema of the individual’s BI
family as well as their ability to engage in professionals disagree. When the group (i.e., their beliefs, values, goals, and
higher level skill acquisition. receiving the training program was expectations surrounding the injury)
Adapting the intervention to fit compared to a control group postinter- predicts adaptation to the demands
the family’s unique needs helps address vention, large effect sizes were seen in placed on the family by the individual’s
162 Dev Disabil Res Rev  FAMILY INTERVENTION GUIDELINES FOR PEDIATRIC ACQUIRED BI  COLE ET AL.
disabilities subsequent to the BI. Family terms. For example, Conoley and Sher- communication had a positive effect on
adaptation to the injury improved when idan [1996] stated family intervention parental burden as well as on the youth’s
perceptions of manageability and mean- should aid parents in resolving differen- recovery. These studies provide support
ingfulness were increased. Therefore, if ces in their reactions to the child with for further investigation of family-sys-
a family’s schemas regarding the youth’s the injury. On the other hand, Leith tems focused interventions after pediat-
injury are positively impacted by infor- et al. [2004] highlighted the importance ric BI, but because of a lack of RCT,
mation about the injury that impacts of parental empowerment to encourage currently only meet Chambless’ criteria
their, their adaptation can be improved realignment within the family structure, of ‘‘Promising, but not yet validated’’
[Kosciulek, 1997]. Wade’s [2006] review with the parents taking a leadership role (see Table 2).
of the BI literature reported that pro- together to support a functional hierar- Another important component of
viding families of youth with BI brief chy in the family structure. Ylvisaker family realignment addresses the issue of
and basic information via educational et al. have extensively discussed family sibling coping. Sibling distress and con-
pamphlets on the topic of BI resulted in realignment in terms of incorporating flict after an individual has sustained a
reduced feelings of familial stress and positive behavioral supports into the BI has been well documented [Gan
distress. family’s everyday routines. Within the et al., 2006]. Siblings should be pro-
Kreutzer et al. [2002] developed a context of BI, the notion of positive vided with adjustment and problem-
Brain Injury Family Intervention (BIFI) behavioral supports involves using ante- solving skills to help reduce the poten-
to deliver to families of adults with BI. cedent-management procedures to min- tial burden they may experience regard-
BIFI features a structured, 16-topic inter- imize situations that commonly lead to ing their sibling’s injury [Conoley and
vention educating families on a variety of problem behaviors, implementing con- Sheridan, 1996]. When siblings of chil-
topics related to BI. The 16 topics sequences to minimize problem behav- dren with moderate and severe BI were
addressed four common areas of need iors, increasing the amount of positive compared to siblings of children with
associated with BI. These areas involved orthopedic injuries, researchers found
education designed to help family mem- that siblings of children with BI with
bers (1) recognize and cope with change, Family intervention subsequent behavioral difficulties were
(2) understand and promote long-term
recovery, (3) effectively manage stress and
research suggests that at risk for more negative sibling rela-
tionships and display of behavior prob-
other problems, and (4) work effectively educational interventions lems [Swift et al., 2003]. Sambuco et al.
with rehabilitation professionals. This alone are not sufficient in [2008] reviewed the literature on sibling
program was developed from a review of outcomes following TBI sustained by a
the literature and clinical experience and producing substantial brother or sister. Their review extends
to date has not been empirically vali- the findings by Swift et al. [2003], in
dated. Although it currently lacks empir-
changes and that family that they concluded siblings of children
ical validation and was developed for support and skills with TBI were at risk for residual psy-
families of adults with BI, this appears to chological distress, especially if the child
be a comprehensive program with theo- training should be added with the injury displayed behavioral dif-
retical underpinnings and adapting this to maximize impact. ficulties. Siblings of children with BI
program for families of youth with BI may also experience numerous qualita-
would be a valuable next step. tive life changes, placing them at
Although providing injury educa- communication between caregivers and increased risk for psychological distress.
tion appears ‘‘Efficacious’’ it is not the individual with the injury, and cre- Findings from Swift et al. [2003] and
without caveats. Family intervention ating positive routines that instill mean- Sambuco et al. review [2008] indicate
research suggests that educational inter- ing into the individual’s day-to-day life the importance of incorporating siblings
ventions alone are not sufficient in pro- [Ylvisaker and Feeney, 1998; Feeney into family interventions for pediatric
ducing substantial changes and that fam- and Ylvisaker, 2003; Ylvisaker et al., BI. However, specific sibling interven-
ily support and skills training should be 2003]. tions have not been systematically stud-
added to maximize impact. Further- To help families facilitate the pro- ied, and thus this clinical guideline falls
more, educational support must be pro- cess of positive realignment, Waaland within the ‘‘Promising, but not yet vali-
vided over a minimum of 3–6 months [1998] recommends that family inter- dated’’ classification (see Table 2).
to have an effect and that importantly, ventions for pediatric BI highlight
the intervention must match the family’s positive change and family competency. ADJUSTING THE CHILD’S
stage of readiness for change [Miller and Interventions should feature compo- ENVIRONMENT
Rollnick, 1991]. nents that encourage the family to work Providing intervention within the
as a team and that guide parents to set context of real-world settings and mak-
FAMILY REALIGNMENT appropriate expectations and boundaries ing necessary adjustments to the injured
Most researchers agree that family for the child with the injury. Also, child’s environment to support ongoing
interventions for youth with brain inju- interventions focused on realigning recovery has received widespread sup-
ries have been found to be most effec- families should help families establish port within BI literature [Ylvisaker,
tive when they incorporate a positive more positive patterns of communica- 1998; Braga et al., 2005]. Adjustments
realignment and reorganization of the tion between caregivers and youth. and supports in the child’s environment
family system [Conoley and Sheridan, Wade et al.’s [2004, 2006a,b] problem- that help the child and family achieve
1996; Ylvisaker and Feeney, 1998; solving intervention has been shown to their chosen goals are of fundamental
Laroi, 2003; Leith et al., 2004]. Various improve parent–child communication. importance [Ylvisaker et al., 2005].
investigators have described the realign- However, it is unclear to what extent Leith et al. [2004] stated that environ-
ment of the family system in different intervention related improvement in mental adjustment should include pro-
Dev Disabil Res Rev  FAMILY INTERVENTION GUIDELINES FOR PEDIATRIC ACQUIRED BI  COLE ET AL. 163
moting a feeling of social belongingness findings support the delivery of inter- improved the adolescents’ self-manage-
for the child to the greatest extent pos- ventions in real-world environments ment abilities [Feeney and Ylvisaker,
sible. Specific adjustments recom- compared to laboratory and clinic set- 2003; Gardner et al., 2003]. Unfortu-
mended by these authors include tings, making a strong case for context- nately, with the exception of Braga
increasing structure and predictability relevant and family-oriented interven- et al.’s [2005] study, most evidence
into the youth’s routine, being proactive tions. regarding adjusting the child’s environ-
in behavioral approaches (i.e., using an- At present, most environment ment is based on adult studies, disabil-
tecedent control whenever possible), adjustment-related research has been ities other than BI, theory, or case stud-
involving people and activities that are conducted using adult samples. For ies. Therefore, this clinical guideline
meaningful to and desired by the youth, example, errorless learning strategies falls within the ‘‘Probably Efficacious’’
and using positive behavioral supports have been effectively employed with classification (see Table 2).
and strategies, such as errorless learning adults with cognitive and behavioral
[Ducharme et al., 2002; Ducharme, impairments secondary to BI [Du- SKILLS TRAINING
2003; Leith et al., 2004; Ylvisaker et al., charme et al., 2002; Ducharme, 2003]. During rehabilitation, caregivers
2005]. Feeney et al. [2001] found that behav- often receive skills training to improve
Braga et al. [2005] conducted a ioral supports can be used effectively in their ability to care for their child after
RCT of an indirect, family-supported the community to assist individuals with BI. Skills training programs often
intervention for children with chronic significant behavior challenges after BI. involve teaching coping skills to the
impairments due to an earlier sustained parents, siblings, and the child with the
BI. The family-supported intervention injury, helping the family build emo-
involved regular hospital visits by at least Skills training programs tional support, or developing problem-
one member of the child’s family, multi-
disciplinary assessment of the child, hav-
often involve teaching solving skills in both the caregivers and
the individual with the injury. Recently,
ing parents attend group meetings and coping skills to the emotional support and skills training are
parent training sessions, involving the parents, siblings, and the areas that have been targeted in research
parents in assessments of the child, and on interventions for pediatric BI. Uti-
home visits by a rehabilitation professio- child with the injury, lizing skills training in rehabilitation
nal to help the family incorporate the allows therapists to identify concrete
rehabilitation program into their every-
helping the family build goals as well as to provide specific inter-
day routines. Patients receiving the fam- emotional support, or ventions, such as increasing the use of
ily-supported intervention were com- effective problem-solving strategies.
pared to patients receiving a clinician developing problem- This approach lends itself to conducting
delivered intervention which followed solving skills in both the well controlled, randomized studies.
‘‘conventional rehabilitation procedures,’’ Caregivers and other family mem-
where relevant clinicians treated the caregivers and the bers may feel overwhelmed in the pe-
child in a clinic setting. They hypo- individual with the riod immediately following injury, espe-
thesized family members could be cially when the child is released from
adequately trained to deliver interven- injury. the acute rehabilitation setting and is
tions within real-world settings and that reintegrated into the home. Waaland
when compared to clinician delivered [1998] proposed that stress reduction in
interventions, the family-supported Another adjustment that is central family members may be facilitated
intervention would result in more posi- to promoting ongoing recovery involves through fostering coping skills, develop-
tive cognitive, physical, and functional introducing structured everyday routines ment of problem-solving abilities, and
outcomes for the youth with the injury. into the day-to-day life of the individ- by learning positive communication
Data were collected over a 1-year pe- ual with BI. Ylvisaker et al. discuss skills. Caregiver coping resources have
riod at the SARAH network of hospi- realigning the family to incorporate been found to impact behavioral seque-
tals in Brazil during the child’s chronic positive behavioral supports into the lae shown by children with BI. For
phase of recovery (i.e., at least 6 months family’s routines. This also involves a example, Kinsella et al. [1999] assessed
postinjury). Physical/ functional out- significant amount of adjustment to the 51 children with BI up to 2 years post-
comes were measured with the SARAH injured individual’s environment in injury and found that parent’s access to
Scale of Motor Development, second order to increase positive interactions coping resources made a substantial
edition and cognitive outcomes were with others, minimize opportunities for impact on their child’s behavioral pre-
measured with the WISC-III. Results failure and allow for success in basic sentation.
revealed that families could be trained daily routines, enhance access to pre- Stress resulting from the youth’s
adequately to deliver the indirect fam- ferred activities, and increase the injury is not limited to the critical pe-
ily-supported intervention, irrespective amount of choice and control the indi- riod of adjustment immediately follow-
of education level. Also, when compari- vidual has over their activities. Case ing injury. Verhaeghe et al. [2004]
sons were made between direct clinician studies of adolescents with substantial reviewed BI literature and discovered
delivered intervention and indirect fam- behavior problems (i.e., physical aggres- that families of individuals with BI
ily-supported rehabilitation of children sion, significant disruptions in the class- experienced significant levels of stress
with BI, children participating in the room, and property destruction) follow- and sometimes required psychological
indirect family-supported intervention ing BI revealed that the introduction of intervention as long as 10–15 years after
displayed statistically and clinically sig- positive behavioral supports reduced tar- the injury occurred. With regard to
nificant improvements in physical/func- geted behaviors to near zero, increased caregiver outcomes, Wade et al. [2001]
tional and cognitive outcomes. These adolescent’s domains of activity, and identified coping strategies impacting
164 Dev Disabil Res Rev  FAMILY INTERVENTION GUIDELINES FOR PEDIATRIC ACQUIRED BI  COLE ET AL.
caregiver adjustment following pediatric 2008]. In addition, family and adoles- For example, choosing developmentally
BI as compared to orthopedic injuries. cent problem-solving training has appropriate interventions and individu-
Findings suggested healthier coping resulted in desirable outcomes for care- ally tailoring interventions to each fam-
strategies, such as acceptance of the givers of youth with BI [Wade et al., ily can help address the barriers posed
changes resulting from the child’s injury, 2008]. More specifically, improvements by the heterogeneous nature of pediat-
were associated with a lower sense of have been documented in parent-child ric BI and varying impact injuries have
parental burden. Studies examining the relationships [Wade et al., 2004, 2006], on youth and their families. Therapists
importance of reducing parent stress parents’ sense of injury-related burden, and researchers must also work around
and promoting healthy adjustment high- parental psychiatric symptoms, parent- the common issues plaguing consistent
light the need to provide families of ing stress [Wade et al., 2005], and pa- participation by families in intervention,
youth with BI with coping skills to alle- rental adaptation to the child’s injury such as feeling overwhelmed with
viate commonly experienced stresses [Wade et al., 2006a,b]. Wade et al. numerous medical appointments, the ge-
and burdens. should be commended for developing ographic location of these resources, or
In addition to addressing caregiver an innovative web-based family problem transportation difficulties. Providing ad-
needs postinjury, the youth with BI solving intervention to help families in vocacy, injury education, and skills train-
may also directly benefit from skills rural areas access services. Innovative ing can help increase a family’s invest-
training. Family coping has been found approaches such as this will facilitate ment in therapy thus decreasing the rates
to have a direct effect on the child’s intervention dissemination and system- of attrition. In addition, there are typi-
recovery from BI [Verhaeghe et al., atic investigations. cally multiple treatment components
2004]. In addition, research has found Although Wade et al. have made required to provide adequate treatment,
that adolescents with severe BI displayed notable progress in this area of research, making it difficult for researchers to
lower health-related quality of life than it will be important to conduct RCT determine unique contributions of inter-
did adolescents with orthopedic injuries studies with larger sample sizes and vention methods as well as to objectively
[Stancin et al., 2002]. Communication clinically indicated youth and families. measure treatment impact. Developing
skills, daily living skills, and general Because of a lack of RCT with clini- specific approaches to interventions, such
adaptive functioning were also lower cally indicated samples, this clinical as problem-solving or positive communi-
amongst individuals with severe BI, guideline currently meets Chambless’ cation training, or creating ‘‘module-
likely contributing to their reported classification of ‘‘Probably Efficacious’’ based’’ interventions, as recommended by
health related quality of life. Skills train- (see Table 2). Wade [2006], can aide in systematically
ing in these areas may be an important studying the unique contributions of
step to improving the youth’s quality of CONCLUSIONS AND FUTURE separate intervention techniques. These
life after injury. DIRECTIONS guidelines can also aid in selecting and
Family-oriented problem-solving When reviewing the state of the measuring outcomes that are consistent
interventions have historically been suc- literature regarding family interventions across studies to aid in future cross-study
cessful at reducing problem behaviors in for pediatric BI, it becomes clear why comparisons. n
children who have not sustained a BI. there is a strong need for increasing
This finding has important implications family intervention research. There are
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