Archives of Physical Medicine and Rehabilitation
Volume 89, Issue 9 , Pages 1803-1810, September 2008

Exploring Postinjury Living Environments for Children and Youth With Acquired Brain Injury

Presented in part to the Toronto ABI Network, November 23, 2006, Toronto, ON, Canada; and the Ontario Association of Children's Treatment Centres, October 22−23, 2007, Waterloo, ON, Canada.

  • Carol A. DeMatteo, MSc

      Affiliations

    • CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
    • Corresponding Author InformationCorrespondence to Carol A. DeMatteo, MSc, CanChild Centre for Childhood Disability Research, McMaster University, 1400 Main St W, Room 408, Hamilton, ON L8S 1C7, Canada
  • ,
  • Martha A. Cousins, MEd

      Affiliations

    • CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
  • ,
  • Chia-Yu A. Lin, MSc

      Affiliations

    • CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
  • ,
  • Mary C. Law, PhD

      Affiliations

    • CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada
  • ,
  • Angela Colantonio, PhD

      Affiliations

    • Toronto Rehabilitation Institute, Toronto, ON, Canada
  • ,
  • Colin Macarthur, MBChB

      Affiliations

    • Bloorview Kids Rehab, Toronto, ON, Canada

Article Outline

Abstract 

DeMatteo CA, Cousins MA, Lin C-YA, Law MC, Colantonio A, Macarthur C. Exploring postinjury living environments for children and youth with acquired brain injury.

Objectives

To explore and describe the extent to which children and youth (10−18y) with acquired brain injury in Ontario are living in environments considered inappropriate, to describe the nature of services and supports in those environments, and to determine appropriate living environments for children and youth with acquired brain injury.

Design

A mixed-methods approach with a case-study design was used in which the living environment represented the case. This article reports on the qualitative component.

Setting

Community agencies and service providers.

Participants

Forty-four service providers across a wide range of profit and nonprofit services for children and youth with acquired brain injury throughout the province of Ontario.

Interventions

Not applicable.

Main Outcome Measure

Semistructured in-depth interviews with participants.

Results

Seven major themes emerged from the data: kids go home, a continuum of appropriateness, show me the way home, same chapter different story, cracking the acquired brain injury code, who said care was fair, and coping, and managing and advocating: new dimensions for families. Important service recommendations were also reported.

Conclusions

Most children and youth with acquired brain injury are living at home. The level of appropriateness of the environment for children and youth after acquired brain injury can depend on multiple interrelated factors including type and severity of acquired brain injury, existing services and service delivery, acquired brain injury knowledge, and family's ability to cope and manage.

Key Words: Adolescent, Brain injuries, Child, Environment, Family, Rehabilitation

List of Abbreviations: TBI, traumatic brain injury

 

EACH YEAR IN THE United States, more than 1 million children and youth sustain brain injuries with 30,000 permanently disabled because of their injuries.1, 2 For the year 2003 to 2004, 5000 children and youth were admitted to hospital for head injury in Canada.3 However, the prevalence of TBI may be greater than reported because the Canadian Institute for Health Information reports only documented major trauma cases.3, 4

Models of disability support the importance of supportive environments for children and youth with acquired brain injury and disability. The person-process-context-time conceptual model by Bronfenbrenner5 provides a framework for conceptualizing the influence of the environmental factors on children and youth with acquired brain injury, including changes within the person, social environment, and institutional environments that may have a detrimental impact on quality of life and participation in everyday activities. According to this model, health and developmental outcomes are the result of complex interactions among the active biopsychologic aspects of the person and the persons, objects, and symbols in the environment over time.5 The World Health Organization's International Classification of Functioning, Disability and Health model also emphasizes environmental factors and their interaction with body function and structures, activities, and participation in relation to disability.6

However, the extent and nature of living environments for people with acquired brain injury are unknown because there has been little study of the environments to which children and youth return to after brain injury. Researchers in the United Kingdom report that obtaining an accurate picture of the living environments and outcomes of children with disabilities has been difficult to determine, given the limited availability of quality data and the absence of children's experiences in the literature who have been separated from their families.7

The 3 main objectives of the study were (1) to explore the extent to which children and youth age 10 to 18 with acquired brain injury are living in environments that would be considered inappropriate, (2) to describe the nature and extent of services and supports in relation to their living environments, and (3) to determine what constitutes an appropriate environment for children and youth with acquired brain injury from the perspective of service providers knowledgeable in the field of brain injury.

Back to Article Outline

Methods 

For the purpose of this study, acquired brain injury was defined as damage to the brain that occurs after birth and is not related to a congenital disorder or a degenerative disease. Damage may be caused by a traumatic injury to the head or by a nontraumatic cause such as a tumor, aneurysm, anoxia, or infection.8

A mixed-methods approach with a case-study design was used in which living environments of children and youth with acquired brain injury in the province of Ontario, Canada (population, 12.6 million) represented the case. A case study is a methodology that allows an in-depth exploration of a phenomenon, which may be a group of people, a program, a situation, or an event.9 In this study, the case was the living environment of children and youth with brain injury in Ontario. This study examined living environments at 1 point in time, thereby making the study cross-sectional in nature.

An in-depth exploration of living environments was accomplished through the integration of both qualitative and quantitative methods. Interviews were conducted with key informants, and data on children and youth with acquired brain injury were also collected from various organizations providing services to children and families. Quantitative methods used a cross-sectional design to collect both retrospective and prospective longitudinal data. This article focuses on the qualitative aspect of this mixed methodology. All procedures involving key informants followed protocol and were in accordance with the Hamilton Health Sciences/McMaster Faculty of Health Sciences Research Ethics Board, who approved this study.

Purposeful sampling, which involves selecting participants because of their characteristics,10 was used. Key informants were identified through recommendations from the research team, study participants, service providers, research reports, government ministries, and the World Wide Web. Inclusion criteria for key informants were people with knowledge and experience in the field of acquired brain injury and children's services, including acquired brain injury service providers, government ministries, and advocates across Ontario. Potential participants were contacted by telephone, email, and mail to participate in a 1-time qualitative interview. Interviews were conducted face-to-face in the community and over the telephone, varying in length from 30 minutes to 2 hours.

Using a semistructured interview guide, the interview focused on questions about children and youth between the ages of 10 to 18 with acquired brain injury and their environments (appendix 1). Data collection was terminated when saturation was achieved. All interviews were taped and transcribed. Content was coded and categorized using content analysis. Consensus of the research team determined main themes. Content analysis was chosen to be the best method of analysis because of the large volume of interviews conducted and the exploratory nature of study objectives. Multiple methods ensuring rigor and trustworthiness of data were used, such as analyst triangulation,11 which was achieved when multiple members of the research team participated in coding of individual text and main themes. Both prolonged engagement and persistent observation12 methods were used by interviewing participants over a significant amount of time in the field (6mo) and conducting in-depth interviews. Member checking12 was conducted by distributing a brief newsletter highlighting results to key informants that asked for their feedback to ensure validity and credibility of results.

Back to Article Outline

Results 

Forty-four people were interviewed across 26 different public and private organizations between December 2005 and May 2006. Geographically, key informants represented all 5 regions of Ontario. Most key informants worked for organizations based in cities such as Hamilton or Toronto in the Golden Horseshoe (55%), while 10 were from Southern and Western Ontario, 7 from Northern Ontario (including Thunder Bay), and 3 from Eastern and Central Ontario. Twenty-five key informants were interviewed over the telephone, and 19 were interviewed in the field, typically at their place of employment. Table 1 is a detailed frequency table about key informants.

Table 1. Characteristics of Key Informants (N=44)
Characteristicn%
Interview type
Face-to-face2557
Telephone1943
Sex
Male1227
Female3273
Geographical region
Eastern and Central37
Golden Horseshoe2455
Northern716
Southern and Western1023
Perspective
Advocacy37
Government1125
Direct service provider3068
Organization's/program's focus
Acquired brain injury or brain injury1636
General (included acquired brain injury)2864
Years of experience (acquired brain injury and/or pediatric)
5−9614
10−191636
20+920
Other1330
Target service population
Children, youth, and families1943
Children, youth, and adults1636
Youth and adults716
Other24
Funding source
Private (for profit)1023
Public (ie, government ministries)3170
Mixed12
Unknown25

Content analysis was performed using the qualitative software program N7.13,a Approximately 50 hours of interviews were transcribed and coded into 7 categories, containing over 180 codes resulting in the 7 main themes, summarized here.

Kids Go Home 

Consensus from key informants confirmed that most children go home eventually if not immediately postinjury and are living at home now. Key informants also listed living environments external to the family home, such as rehabilitation centers, nursing homes, private and publicly funded residential facilities, group homes, foster homes, and associate care homes, as well as jail, on the street, and out of the country.

Most of them are at home. If you look at the discharges from all the various hospitals or hospital-based programs, you will find that about 80% or more are sent home. Why are they sent home? Because there is nothing to provide services for them. There are not enough places for them to go, and so they go home and the families do the best they can. (participant 37)

A Continuum of Appropriateness 

Consent forms provided key informants with a general description of an inappropriate living environment as “a setting that minimizes, reduces, or removes access to suitable services and supports for acquired brain injury and may impact the process of typical development.” Key informants were invited to provide their own perspective producing a much more complex definition. The resulting description of the level of appropriateness of the environment is a continuum-dependent on multiple interrelated factors (table 2). Factors include the family's ability to cope, manage, and care for their child; and knowledge and access to acquired brain injury funding, services, and supports.

Table 2. A Continuum of Appropriateness
Most AppropriateLess Appropriate and Inappropriate

At home with family, close to home, homelike setting

Community-based, able to facilitate community reintegration

Access to acquired brain injury knowledge (service providers, educators, family)

Access to acquired brain injury–knowledgeable and specialized staff

Acquired brain injury–focused programming

Client and family–centered services and supports meet individual's needs

Structure is safe, licensed facility that meets provincial requirements

Age-appropriate

Child's participation is enabled


Family lacks appropriate services and supports and is unable to function

Child is segregated from family, friends, community, and/or services

Lacks acquired brain injury knowledge

Lacks access to acquired brain injury–knowledgeable and specialized staff

Programming is not acquired brain injury–focused, eg, punitive, lacks structure and consistency, unsafe, improper ratios

Child's needs are not being met, may not recognize child has special needs

Unsafe structure (eg, not a locked facility if that's what's needed)

Not age-appropriate (eg, chronic care facility, nursing home)

Barriers to child's participation

Inappropriate and less appropriate environments inside and outside the home, such as jail, on the street, and adult chronic care facilities can emerge when families are no longer able to care for the child or access to funding, supports, and services is limited or nonexistent. Key informants identified specific qualities that make all child and youth environments inside and outside the home more or less appropriate.

The environment has got to meet the needs of the child, period. (participant 28)

Show Me the Way Home 

As reported in the theme kids go home, most children do go home postinjury. Whether they go home and then stay home over the long term can be dependent on multiple interrelated factors including characteristics related to the child (eg, injury severity, behavior, age, development); the family and their ability to care for their child; decisions, recommendations, and philosophy of care of service providers; and access to services and supports (eg, funding, acquired brain injury–specialized programming, and respite).

Postdischarge, some children may not go home because of the severity of the injury and/or the family's capacity to care for them. Those who require intensive rehabilitation may go to a pediatric rehabilitation center. However, eventually the goal is to get them home.

You only have one choice—go home. With children, like I said, the ideal thing is to keep children with family. That is what our country is based on. It will all break down if they don't have the appropriate supports. Not just with the injured person, but with the family. (participant 13)

Some children will not go home after discharge because of issues related to the family's capacity to care for them and protection issues (eg, cause of acquired brain injury was child abuse) and will be placed in living environments such as group homes or foster care. That being said, most service providers, the health care system, and society are committed to the philosophy that children should be at home with their families and families typically want to take their children home. However, this can be a problem when services are not available in the child's home community and the family is not able to care for their child.

Some children and youth with acquired brain injury may have cognitive and behavior difficulties because of the nature of the injury. Behaving inappropriately or acting aggressively or violently toward others, both inside and outside the home, is a challenge that can result in involvement with the law and sometimes jail. Families who do not have access to services and supports such as respite or behavior management may be unable to cope. This may result in a less than appropriate living environment at home for everyone, with subsequent placement outside the home for the person with acquired brain injury.

There are no publicly funded acquired brain injury–specialized residential facilities within this province. Children with acquired brain injury without access to funding for private residential programs may be put on waiting lists for residential facilities designed for children with mental health diagnoses or developmental disabilities. As a result, some children, even with specialized needs, will have nowhere else to go and will remain in their families' homes, causing further stress on the family and possibly compromising their recovery potential.

It was reported by some key informants that a small number of children may be living outside the family home in the care of the Children's Aid Society because their parents have been forced to give them up, or in the United States in order to access acquired brain injury–specialized behavioral services or residential care.

Same Chapter Different Story 

Each child with acquired brain injury and the family are unique, although the children experience similar kinds of injuries. The impact on the child's brain and subsequent recovery can be variable and complex and can depend on many factors such as age, development, preinjury personality, comorbidities, and family situation. Families have varying internal and external resources available to them, and they are based in differently resourced communities, also contributing to the impact of the injury. The range and intensity of services needed by children and their families are influenced by these combined factors. Specialized acquired brain injury resources should be adapted to the needs of each child and family to achieve maximum effect.

Kids with acquired brain injuryobviously each one is unique and has, has unique needs… (participant 15)

Yeah and so much depends again on their outcomes you know so each individual as related to the head injury and then the family's ability to manage all that. (participant 10)

Cracking the Acquired Brain Injury Code 

Children's services, educators, and health care providers may have inconsistent acquired brain injury knowledge. This lack of knowledge may include consequences of brain injury, service needs, and availability of resources within the child's community and will affect what services are recommended and received.

we are still not really good at being able to identify what the consequences of acquired brain injury are, and that creates a limitation in terms of how one can identify what a remedy and what a resource is. (participant 12)

Families, too, often lack the necessary education about acquired brain injury, particularly what changes may be related to the brain injury and what resources should be available to their child after acquired brain injury.

What happens a lot of times is that they look normal, and it's those subtle areas of judgment. It's the inhibitions, the stuff that never happened before, that happens now. Definitely education plays a role in understanding what that is all about. Some people are at different levels, to be able to take that in and know then what that means and what they need to do about it, versus oh well it'll take care of itself. So those children are definitely at a disadvantage… (participant 24A)

Often the existence of a brain injury is not documented in programs not specifically designed to work with survivors of acquired brain injury. This makes it difficult to determine the numbers of children needing and accessing services.

Key informants also reported a lack of government awareness and knowledge of pediatric acquired brain injury, their needs, and how many children may be waiting for residential services.

Who Said Care Was Fair 

Children who acquire a brain injury in this jurisdiction do not have equal access to funding or services. Children who acquire their injury through a motor vehicle collision have access to funding through automobile insurance, which pays for private services, while children who acquire their injury through other mechanisms (eg, fall) must rely on publicly funded services if available. Private services can provide higher intensity and for a longer period than publicly funded resources. The existence, availability, and funding of pediatric acquired brain injury public services are also not equal or consistent across the province. They can depend on how resources are designated by the province and local community.

It tends to almost be a Cadillac service is what it's seen as by some people in the community andI think it'sthe ones that are uninsured that probably have the toughest time in terms of getting resources. (participant 26)

All we do is keep arranging the deck chairsit becomes an impossible situation because we have to take from someone else to give to them. (participant 10)

As reported in the theme show me the way home and reiterated here, there are no publicly funded residential facilities specifically for children with acquired brain injury. Children without access to private funding for residential care may be put on waiting lists for publicly funded residential facilities that are not designed for them and may exist outside their community. Living environments other than residential care, such as group homes or foster care, may be an option, but again may lack acquired brain injury–specialized staffing and programming.

Families are often required to access services across multiple public and private organizations, funded by different ministries, with eligibility criteria that may lack a pediatric acquired brain injury focus. Furthermore, coordination and integration of services is not consistent throughout the province.

Services reported as very limited and sometimes nonexistent within the public sector included speech therapy, occupational therapy, physical therapy, neuropsychology, recreation, behavioral programs, and respite (see sections “Coping, Managing, and Advocating: New Dimensions for Families” and “Needs and Recommendations”).

Access to appropriate services is also inconsistent within the Ontario Ministry of Education. Acquired brain injury is not formally recognized as a special designation requiring specific supports and services. Schools lack acquired brain injury programming and specialized staff that will help children and youth with acquired brain injury reach their academic potential.

The speech component can wait a little bit longer, but you can get the occupational therapy and physio in there within 2 weeks for sure. School is a different story. We have a very long wait list for services within the school; however, if it's a child with a pretty fresh acquired brain injury, if they can identify them as an acquired brain injury, our support is going in much more quickly. It will go in within a couple of weeks. (participant 20B)

This fragmentation and inconsistent delivery of services can make navigating services challenging and difficult for families, especially for those who do not have access to funding and case management. It can be particularly problematic for families over time, when the child or youth is transitioning from one program or ministry to another, from home to community, and requires more or different services, supports, or funding, resulting in some children and families falling through the cracks.

On a positive note, key informants reported that informal partnerships and collaborations among service providers, between organizations, and across communities, particularly in Northern Ontario, help improve the continuity of care for children and youth with acquired brain injury and their families.

Coping, Managing, and Advocating: New Dimensions for Families 

The theme kids go home tells us that postinjury and discharge from the hospital, most children go home to their families. Families will experience stress and financial burden that go along with having a child with acquired brain injury, and some may have more significant problems resulting in physical and emotional health issues. Once home, parents are often required to fulfill the role of caregiver, case manager, and advocate for their child with acquired brain injury. They may need to advocate strongly for their child's access to services and supports in order to get their needs met at home, at school, and in the community. Children with severe behavioral issues can be particularly difficult to care for.

We don't support families very well and I think that when, when we get into some really sticky situations like the ones I get involved in when it's, of course the child's unable to be supported at home there aren't great options out there and usually it's a scramble of putting things together. (participant 14A)

Some parents may be required to quit their job in order to care for their child's needs, causing a financial burden. Traveling to appointments, moving in order to access services, purchasing wheelchair-accessible automobiles, and making renovations to their house can all be very costly.

Ah financial impacts. Sometimes parents give up one jobone parent decides that they can't work anymore so they're gonna stay home with, with the child. Especially after the first year of injury. (participant 25)

Caring for a child with acquired brain injury can impact how a family functions. While parents are caring for their child with acquired brain injury, they are also trying to cope with its effect on the family and provide care for other family members. Feelings of guilt and denial by parents and family members can impact their ability to cope. The stress of caring for a child with acquired brain injury can cause marital strain with conflict between parents. Family members may find themselves having to take on new roles and function much differently than they had before. Children with acquired brain injury require a lot of attention, and siblings might feel jealous or isolated. They may also begin to take on the role of caregiver, affecting their ability to develop appropriately for their age. As discussed in the theme same chapter different story, the impact of acquired brain injury is not the same for everyone and can depend upon many factors, including family. Some families may have better coping skills or a greater capacity to perform these added responsibilities.

It's like a cog in a wheel when it's broken. The wheel doesn't work very well. So the functioning of the family diminishes. All of the attention is put on that child. Let's say there is more than 1 child in the family. There may be younger siblings that need attention for various reasons because of their age. Even older siblings. But everyone is focusing on this child. So that impacts on them in a different way…. (participant 13)

Although many key informants reported the negative side of caring for a child with acquired brain injury, some also remarked on the benefits of advocacy and how the process of caring can result in family members and family bonds becoming stronger.

But what's interesting is in watching parents with their children who have ah[pause]an individual with an injury or whatever most are really, really strong. Not all of them but most of them get to be significant advocates. People who were quite meek beforehand they know how to fight because they have to. (participant 14B)

Needs and Recommendations 

Key informants were asked what they thought were necessary services and supports for children and youth with acquired brain injury and their families and to make recommendations that would improve existing services and service delivery in Ontario:

1.More support is needed for families to help them provide a postacquired brain injury–appropriate environment for their child.

2.More publicly funded pediatric acquired brain injury–specialized services and programs are needed.

3.More publicly funded pediatric acquired brain injury–specialized living arrangements are needed.

4.Children and youth with acquired brain injury and their families would benefit from a more consistent continuum of care with services integrated and coordinated across sectors and health professions.

5.All service providers that serve children and youth need to have an increase in acquired brain injury knowledge, specialization, and awareness. There is a particular need for better acquired brain injury knowledge for educators and within the Ontario Ministry of Education. Most importantly, families would benefit greatly from an increase in acquired brain injury education.

Back to Article Outline

Discussion 

The themes kids go home and a continuum of appropriateness confirm what has long been assumed, that most children with acquired brain injury between the ages of 10 and 18 years are living at home with their families. Results contribute to the argument that young people with acquired brain injury living in aged care facilities as reported by Cameron14 is not appropriate. The resulting social isolation, combined with inadequate skills level among staff, and inability to meet the rehabilitative, behavioral, and emotional needs of the young person make such an environment less suitable and inappropriate.14 Although some of these characteristics could likely be applied to all children with disabilities living outside the home, access to acquired brain injury programming and knowledgeable staff specifically points to the uniqueness of the acquired brain injury situation.

Environmental barriers for children and youth with acquired brain injury studied by Bedell and Dumas15 echo findings from themes show me the way home and cracking the acquired brain injury code. Parents surveyed about environmental problems reported that social, institutional, and attitudinal factors most affect their children rather than physical environment problems. Bedell and Dumas15 suggest this may be because physical accommodations at school are legally mandated for children with disabilities as part of their individualized education plan.

Research reviewed by Anderson and Catroppa16 provides additional evidence similar to our findings of limited services and inadequate education for children and adolescents with TBI postdischarge from hospital. Results from a sample of 24,021 children indicate that although there was evidence that 27% had functional impairment at time of discharge, 75% were discharged without an active rehabilitation program, and less than 2% were referred for educational assistance.16 Such low rates of service provision compared with identified problems can be related to the inconsistent knowledge among service providers and a lack of acquired brain injury services illustrated in the themes cracking the acquired brain injury code, who said care was fair, and show me the way home. Similar findings from a study by Mellick et al17 on youth and adults with TBI identified 6 care pathways that followed postacute care, some of which included going home or to a long-term care facility without any services. Two thirds of their sample did not receive any services postacute care, and a disproportionate amount of severely injured followed each pathway.17

Canadian research on care pathways postinjury for youth and adults also found that multiple factors influence where people live and their access to services, supporting the theme show me the way home, and that more participants went home with supports in the motor vehicle group than those who acquired their injury through a fall, supporting who said care was fair.18

Our findings support the information that family environment is important for children and youth, especially after acquired brain injury, while illustrating that families are likely to encounter large amounts of stress and increased burden if they are caring for a child with acquired brain injury. The themes show me the way home, coping, managing, and advocating: new dimensions for families, and same chapter different story highlight that how well a family is able to support a child with acquired brain injury outside of external resources can depend on a family's internal resources, including the ability to manage stress, organize appointments, advocate, and so forth. Some families may be able to do this better than others but risk burnout or family disruption. Research indicates that family environment factors such as family burden, parental psychologic distress, and family dysfunction can predict children's outcomes postinjury, and that children from families who have better circumstances, even after controlling for things like group effects, race, and sociodemographic status, have better outcomes postinjury across concurrent assessments.19 In a study by Slomine et al20 looking at health care utilization for children with moderate to severe acquired brain injury, at 3 and 12 months postinjury, 20% of children studied had unmet needs, and 10% had needs that were not recognized by their caregivers. Family function and access to insurance were suggested to impact whether children with acquired brain injury may have their service utilization needs met and recognized.20

The role of injury and behavior for children and youth with acquired brain injury was consistently reported as an influencing factor on environments in this study. Research by Taylor et al21 supports the argument that a reciprocal relationship exists between a child's injury, specifically behavior, and family burden and psychologic distress, impacting long-term outcomes of TBI.

In addition to the themes identified in this study, recommendations given by our key informants reflect those reported in research with similar health professionals working in the field of pediatric acquired brain injury internationally. Case managers of children with acquired brain injury in Australia, in ranking the importance of services they provide to children and families, reported coordination of services, liaising, education, and referral to other services as the 4 most important services, followed by goal setting, counseling, preparing rehabilitation plans, and group work.22 Similarly, all of these services were reported to be lacking for many families in Ontario.

Although this study provided the service provider perspective of family needs, cross-sectional studies conducted internationally from the perspective of children and families found similar results. Key findings from qualitative research conducted with children with TBI, their families, and professionals by the Child Brain Injury Trust of Northern Ireland and Scotland parallel many themes illustrated here: a lack of acquired brain injury–specialized services and other services, including respite, psychology, and counseling; lack of service coordination; issues around acquired brain injury knowledge and education in the school system; and impact on the family, to name a few.23, 24

Study Limitations 

This study focused on the perspectives of service providers across a spectrum of services that serve children and youth with acquired brain injury and their families, but does not necessarily reflect those of children and their families. Although similar results have been found in studies with families, future research on living environments should continue to include consumers and their families, and extend to include young adults who may be most likely to be living in alternative environments.

In summary, in-depth information provided by a good representation of experienced professionals in Ontario, Canada, connected to the world of acquired brain injury illustrates a number of key themes that resonate with findings in other countries. The themes, although not startling in their originality, show a high degree of consensus among the participants. They confirm once again important information that we have heard before, such as the inconsistency of available services to all children and adolescents with acquired brain injury. What makes this study unique is the comprehensive description of the qualities that influence the appropriateness of the living environment, specific to acquired brain injury in children and youth.

We now know that children mostly do go home after acquired brain injury, and that is where most believe they should go as long as the family receives the necessary support to provide the appropriate environment. Increased awareness of the issues of appropriateness of environments for children and youth with acquired brain injury could contribute to improved planning and coordination of services and supports. This is extremely important given the prevalence of acquired brain injury and the long-term rehabilitation needs among children and youth with acquired brain injury. Recommendations provided by key informants as described in the Results section offer important knowledgeable solutions to problems identified in themes. Exploratory findings from this study can contribute to a more generalizable, longitudinal study investigating the identified environmental conditions with a large group of children and youth with acquired brain injury.

Back to Article Outline

Conclusions 

Key informants in this study reported that most children and youth in Ontario are living at home and that an appropriate environment for children and youth with acquired brain injury is at home with their family with the provision of necessary services and supports. There is an environmental continuum of appropriate to inappropriate for children and youth with acquired brain injury that is influenced by multiple interrelated factors.

There's a simple answer and there's a complicated answer. The simple answer is an appropriate environment is one that meets their needs and assists them, gives them the appropriate amount of challenge to move forward and still be safe, and an inappropriate environment is the opposite of that. (participant 7)

Supplier

Back to Article Outline

Acknowledgment 

We thank Rachel Teplicky, MSc, for her contribution.

Back to Article Outline

Appendix 1. Interview Guide 

Screening Questions 


1.What positions have you held that involved work with people who have Acquired Brain Injury (ABI)?

2.In what regions or cities in Ontario?

3.How long have you worked with this population?

4.Is your experience with ABI from the private sector (eg, insurance), public sector (government), or both?

5.What is your current position?

6.What is your role?

7.How knowledgeable do you feel about placement issues and or living environments for children/youth with ABI in your region or city?

8.How knowledgeable do you feel about service issues for children/youth with ABI in your region or city?

Interview Questions 


1.What are your organization's admission and exclusion criteria?

2.What catchments do you serve?

3.How big is your staff?

4.How is your organization funded?

5.What programs/services are provided by your organization?

6.How and why are children/youth referred to your facility? Are these children/youth referred because of the brain injury or for other reasons?

7.How does your organization identify whether or not someone has a brain injury? For example, do you perform an assessment and/or ask a question at intake?

8.What percentages (estimate) of your clients have had a brain injury in their past? If this is not the primary reason for referral is this information specifically identified about the youth? For example if a youth is referred to your facility for behavior problems, how is it determined whether or not he or she has had a previous brain injury?

9.How many children/youth with ABI does your organization serve per year?

10.What other types of clients do you serve?

11.How many children/youth live at your facility? (if a residential facility.)

12.What is the average length of stay?

13.Can you estimate how many clients have been referred to your organization but are still waiting for services? How long have the clients at the head of your waiting lists been waiting?

14.Where are children/youth with ABI living while they wait? Do you consider it to be appropriate or inappropriate for them and why?

15.How many clients have been referred to your organization but were denied service?

16.What reasons were given for denying service?

17.Are there other organizations that you refer to or recommend as service providers for children/youth with ABI?

18.What do you consider an appropriate living environment for a child or youth with an ABI?

19.What do you consider an inappropriate living environment for a child or youth with an ABI?

20.Do you consider living environments to be a problem for this age group? Please explain.

21.What are some of the needs of children and youth with ABI that are important to consider when choosing a living environment?

22.In your opinion how are these needs being addressed or not addressed in Ontario at this time?

23.What are some additional factors affecting where the child or youth will live after ABI? (eg, comorbid conditions, age, etc.)

24.What are your observations as to where children and youth live after sustaining a brain injury? Does this change depending on the time after injury? Please explain.

25.In your opinion what influences where the child or youth is sent after discharge from the acute hospital?

26.How does the health/rehab system enable children and youth with ABI to live in an appropriate environment?

27.What are some of the challenges within the system in choosing and finding an appropriate living environment for the child or youth with ABI?

28.Are there typical “pathways” followed by families seeking placement or alternative living environments for their child? If so, what are they?

29.We do know that most children and youth return to their families soon after sustaining an ABI. What is the impact on the family and burden if any of having a child/youth with a moderate-severe brain injury living at home?

30.What do you consider to be necessary supports and services for children/youth and their families after sustaining an ABI?

31.In your experience do children and youth receive the services and supports they require in Ontario?

32.Would you say that all children in Ontario have equal access to service and supports? If no, explain.

33.What do you perceive to be barriers to accessing these services and supports? How would you change things?

34.How would you change the existing system to provide the best service and support possible for children/youth with brain injuries in Ontario?

35.How would you change the existing system to enable more effective and efficient placement to an appropriate living environment for children and youth with ABI?

36.Anything else to add?

Back to Article Outline

References 

  1. Langlois J, Rutland-Brown W, Thomas K. The incidence of traumatic brain injury among children in the United States: differences by race. J Head Trauma Rehabil. 2005;20:229–238
  2. Traumatic brain injury. NICHCY Disabil Fact Sheet. 2006;18:1–4http://www.nichcy.org/pubs/factshe/fs18.pdfAccessed February 27, 2007
  3. Canadian Institute for Health Information. Head injuries in Canada: a decade of change (1994-1995 to 2003-2004). Ottawa: CIHI; 2006;
  4. Canadian Institute for Health Information. Ontario Trauma Registry analytic bulletin: major head and spinal cord injury hospitalizations in Ontario, 2001-2002. Toronto: CIHI; 2004;
  5. Bronfenbrenner U. Environments in developmental perspective: theoretical and operational models. In:  Friedman SL,  Wachs TD editor. Measuring environment across the life span: emerging methods and concepts. Washington (DC): APA; 1999;p. 3–30
  6. World Health Organization. International classification of functioning, disability and health. Geneva: WHO; 2001;
  7. Read J, Harrison C. Disabled children living away from home in the UK: recognizing hazards and promoting good practice. J Soc Work. 2002;2:211–231
  8. Toronto Acquired Brain Injury Network. What is brain injury, definition of acquired brain injury. http://www.abinetwork.ca/familyresourceguide/whatisbraininjury-definition.htmAccessed February 27, 2007
  9. Creswell JW. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks: Sage; 1998;
  10. Morse JM, Richards L. Readme first for a user's guide to qualitative methods. Thousand Oaks: Sage; 2002;
  11. Patton MQ. Qualitative evaluation and research methods. 2nd ed.. Thousand Oaks: Sage; 1990;
  12. Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills: Sage; 1985;
  13. NVivo7 [computer program]. Cambridge: QSR International; 2006;
  14. Cameron C. Younger people with acquired brain injury in nursing home: fact sheet (Milton: Brain Injury Association of Queensland; 2001). http://braininjury.org.au/portal/fact-sheets/younger-people-with-acquired-brain-injury-in-nursing-home---fact-sheet.htmlAccessed August 12, 2007
  15. Bedell GM, Dumas HM. Social participation of children and youth with acquired brain injuries discharged from inpatient rehabilitation: a follow-up study. Brain Inj. 2004;18:65–82
  16. Anderson V, Catroppa C. Advances in post acute rehabilitation after childhood-acquired brain injury. Arch Phys Med Rehabil. 2006;85:767–778
  17. Mellick D, Gerhart KA, Whiteneck GG. Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury. Brain Inj. 2003;17:55–71
  18. Kim H, Colantonio A, Deber R, Vernich L. Discharge destination from acute care after traumatic brain injury. Can J Neurol Sci. 2006;33:48–52
  19. Taylor GH, Drotar D, Klein SK, Yeates KO, Wade SL, Stancin T. Influences on first-year recovery from traumatic brain injury in children. Neuropsychology. 1999;13:76–89
  20. Slomine BS, McCarthy ML, Ding R, et al. CHAT Study Group Health care utilization and needs after pediatric traumatic brain injury. Pediatrics. 2006;117:e663–e674
  21. Taylor GH, Yeates KO, Wade SL, Drotar D, Stancin T, Burant C. Bi-directional child-family influences on outcomes of traumatic brain injury in children. J Int Neuropsychol Soc. 2001;7:755–767
  22. Scheinberg AM, Gibson W, Hughes D, Miles A, Murphy P, Noronha J. Survey of paediatric case management practices in Australia for children and young people with acquired brain injury (ABI). Child Care Health Dev. 2005;31:679–684
  23. Anderson M. “High and dry” living with acquired brain injury in Northern Ireland: a family perspective. Oxford: Child Brain Injury Trust; 2003;http://www.cbituk.org/CBIT_in_Your_Area/Northern_Ireland/Downloads/CBIT%20High%20and%20Dry.pdfAccessed August 20, 2007
  24. Calderwood L. “Scotland's invisible children” acquired brain injury revealed. Oxford: Child Brain Injury Trust; 2004;http://www.cbituk.org/CBIT_in_Your_Area/Scotland/Downloads/scotlands%20Invisible%20children.pdfAccessed August 20, 2007
  • a QSR International Pty Ltd, 225-R Concord Ave, Cambridge, MA 02138.

 Supported by the Ontario Neurotrauma Foundation (grant no. 2005-ABI-ILE-370).

 No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.

 Reprints are not available from the author.

PII: S0003-9993(08)00427-9

doi:10.1016/j.apmr.2008.02.025

Archives of Physical Medicine and Rehabilitation
Volume 89, Issue 9 , Pages 1803-1810, September 2008