. . . . . Mental Health . . . . .
© 2006 National Rural Health Association 182 Vol. 22, No. 2
Family Perspectives on Pathways to Mental
Health Care for Children and Youth in
Katherine M . Boydell , MHSc , PhD ; 1,2 Raymond Pong , PhD ; 3 Tiziana Volpe , MSc ; 1 Kate Tilleczek , PhD ; 4
Elizabeth Wilson , PhD ; 5 and Sandy Lemieux , BA 3
ABSTRACT: Context: There is insuffi cient literature
documenting the mental health experiences and needs of
rural communities, and a lack of focus on children in
particular. This is of concern given that up to 20% of
children and youth suffer from a diagnosable mental
health problem. Purpose: This study examines issues
of access to mental health care for children and youth
in rural communities from the family perspective.
Methods: In-depth interviews were conducted in rural
Ontario, Canada, with 30 parents of children aged 3-17
who had been diagnosed with emotional and behavioral
disorders. Findings: Interview data indicate 3 overall
thematic areas that describe the main barriers and
facilitators to care. These include personal, systemic, and
environmental factors. Family members are constantly
negotiating ongoing tension, struggle, and contradiction
vis-à-vis their attempts to access and provide mental
health care. Most factors identifi ed as barriers are also,
under different circumstances, facilitators. Analysis
clustered around the contrasts, contradictions, and
paradoxes present throughout the interviews.
Conclusions: The route to mental health care for
children in rural communities is complex, dynamic, and
nonlinear, with multiple roadblocks. Although faced with
multiple roadblocks, there are also several factors that help
minimize these barriers.
their urban counterparts. 2,3 Problems of service access
often result from geographic, economic, and cultural
factors. 4,5 In sparsely populated areas, travel expenses
increase the costs of both providing and obtaining care.
In addition, children from rural areas often must be
urrently, there are as many as 10 million
Canadians who can be considered rural
residents — one third of all Canadians. 1
Children and their families in rural and
northern communities may face more
obstacles obtaining health services and supports than
placed in residential care outside of their community
because of the lack of resources within the community. 6
Geographic and professional isolation make rural
communities less attractive to mental health workers. It
is diffi cult to recruit and retain specialists, who tend to
concentrate in larger urban areas. 7 Most rural
communities are too small to sustain highly specialized
personnel. Moreover, within the health research
community, rural issues are often overlooked or dealt
with generically. When rural perspectives are
examined, it is frequently within the context of urban-
rural differences, rather than as the sole focus of
attention. 8 When mental health is the focus, there is
little literature documenting the mental health
experiences and needs of rural communities, and a lack
of focus on children and their families in particular. 9
The purpose of this study is to examine issues of
access to mental health care for children and youth in
rural Canadian communities from the family perspective.
Canadian Health System. The Canadian health
system is a publicly funded insurance program where
1 Community Health Systems Resource Group, The Hospital for Sick
Children, Toronto, Canada.
2 Departments of Psychiatry and Public Health Sciences, University
of Toronto, Toronto, Canada.
3 Centre for Rural and Northern Health Research, Laurentian
University, Sudbury, Ontario, Canada.
4 Department of Sociology, Laurentian University, Sudbury, Ontario,
5 Independent research consultant, Owen Sound, Ontario, Canada.
The authors gratefully acknowledge the support of the funders,
the Canadian Health Services Research Foundation and the Ontario
Ministry of Health and Long-Term Care. The authors also thank the
family participants who so willingly shared their stories with us.
For more information contact: Katherine M. Boydell, 555
University Avenue, Toronto, Ontario, Canada M5G 1X8; e-mail
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Boydell, Pong, Volpe, Tilleczek, Wilson and Lemieux 183 Spring 2006
costs are controlled, hospitals are nonprofi t and doctors
are private. Canada has a single insurance plan, or
“ single-payer, ” in that each province pays the bills for
everyone. One of the major differences between
Canada and the United States is that in the US, ability
to pay has a greater effect on the use of and access to
services than in Canada. Each province has its own
system and its own unique way of funding it. But, in
spite of this decentralized approach, the provision of
medical and hospital services to all Canadian citizens
regardless of where they live or their economic means
is something to which all provinces subscribe. Private
practitioners are generally paid on a fee-for-service
basis and submit their service claims directly to the
provincial/territorial health insurance plan for
payment. It is called single payer because there is only
one “ payer ” ; there is no alternative program, such as
private health insurance, to which Canadians can turn
for basic, medically necessary health care. The
Canadian health care system ensures that all eligible
residents have reasonable access to hospital and
physician services on a prepaid basis, without direct
charges at the point of service. In addition to hospital
and physician services, provinces/territories also
provide public coverage for other health services,
including children ’ s mental health programs.
Qualitative in-depth interviews were conducted
with 30 parents living in rural Ontario who had
children, 3-17 years of age, formally diagnosed with
an emotional and/or behavioral disorder. The criteria
we used for inclusion regarding diagnoses was a formal
mental health diagnosis as indicated by the children ’ s
community mental health agency with which families
were associated. Community focus groups were
held in the 2 study sites for the purposes of promoting
the research study and building local interest in
the research, as well as assisting with sampling
and recruitment strategies. Families meeting study
inclusion criteria were approached by the staff of local
community mental health agencies to gauge willingness
to participate in the study. Those who expressed an
interest in participating were then contacted by the
research fi eld worker in their area. A purposeful
maximum variation sampling strategy 10,11 informed
participant selection to ensure key variables were
represented (ie, child gender, age and diagnosis, region,
frontline and managerial providers) and to capture a
wide range of individuals, experiences, and events.
This research was based on an approach designed
to have decision makers participate in all aspects of the
study from implementation to dissemination. As such,
an advisory committee comprising service providers,
academics, and health policymakers was put into place
to guide the study. These stakeholders acted as
ambassadors of the study and provided the local
context to inform the investigative team. They also
served a critical role in the dissemination of study
processes and fi ndings.
The defi nition of rural used in this study is based
on the Statistics Canada defi nition, which refers to
people living outside the commuting zones of larger
urban centers, especially outside Census Metropolitan
Areas (population of 100,000 or more) and Census
Agglomerations (population of 10,000-99,999). 12 For
this study, we utilized a distance of at least 50 km
(31.07 miles) from Census Agglomerations.
Participants were recruited from rural areas of 2
regions in Ontario. The fi rst was the catchment area
around the city of Owen Sound in southwestern
Ontario, which is one of the most rural districts in
southern Ontario. The population of the catchment area
served is approximately 150,000, with a total of 14,145
km 2 (8,789 square miles). Owen Sound is the largest
center with the population of approximately 22,000
people. Distance is a big factor in service delivery. Poor
winter driving conditions compound the problem.
Residents must often travel out of the area for
specialized medical services, which usually means
a 5- or 6-hour round trip. Since there is no passenger
train service and limited air and bus service, travel is
mostly by private vehicles.
The second region was the catchment area of
Sudbury, comprising a total population of slightly more
than 150,000 over 5,398 km 2 (3,354 square miles). The
great majority of the people reside in the City of
Greater Sudbury. Outside the city, the population
density is much lower. The francophone population
accounts for about 28% of the total population. There
are three hospitals in the Sudbury District, one of
which is a fairly large community hospital with tertiary
care capability. The other two are small rural hospitals.
Data Collection. Extensive fi eld notes were taken
throughout and were used in conjunction with data
from interview transcripts. In-depth interviewing,
described 13 as a “ directional conversation that elicits
inner views of respondents ’ lives as they portray their
worlds, experiences and observations ” (p385) was used. A
semistructured interview guide was developed and
further refi ned with input from the study ’ s advisory
committee. This guide included a cover sheet for basic
demographic data for the participant group. Two
trained fi eld researchers, one from each study site, were
hired to participate in varied aspects of the research,
including recruitment, interviewing, data analysis, and
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The Journal of Rural Health 184 Vol. 22, No. 2
write up of the results. Both fi eld researchers were
trained at the graduate level and were familiar with
qualitative methods and the mental health system.
Individual interviews were conducted in an agreed-
upon locale, the majority being the family home. In a
few cases, interviews were conducted in the offi ces of
local community centers. Interviews ranged in length
from 1 to 2 hours. All interviews were audiotaped,
transcribed verbatim, and converted into the format
required for use with Ethnograph (Qualis Research
Associates, Colorado Springs, Colo), a computer
program for the analysis of text-based data. This
program assists with the task of identifying, coding,
and collecting segments in order to compare them,
develop themes and propositions, and revise initial
segmentation and coding decisions.
Analysis. The analysis of qualitative data involved
utilization of a 7-step method. 14 Each research team
member (the principal and coprincipal investigators,
the research coordinator, and the fi eld researchers)
examined all transcripts. Themes were identifi ed and
discussed, and a coding scheme was developed to
refl ect these themes. The team used the codebook
developed as a result of the aforementioned processes
to systematically review the textual data.
The 30 family members interviewed for this study
were primarily mothers (N = 24). The majority of the
respondents were married (N = 25), and 18 were
employed. Of the 30 family interviews, 3 had more
than 1 child with a diagnosable mental health problem;
therefore, our results account for a total of 35 children.
The mean age of these children was 11.6 years (22
males, 13 females). Children with mood disorders,
anxiety-related disorders, and oppositional-defi ant
disorders accounted for one half of the sample.
Seventeen children were diagnosed with 2 (N = 11) or
more (N = 6) comorbid disorders, while 17 children
presented with single diagnoses (missing diagnosis on
1 child). Analysis of the interview data indicates 3
overall thematic areas that capture the main barriers
and facilitators to care for children and youth in rural
Ontario. These include personal, systemic, and
Personal Barriers to Access and Utilization
Stigma. Perceived stigma and lack of anonymity
were identifi ed by families as barriers to care for their
children, often delaying or preventing access. Family
members seeking services indicated that, due to the
small size of rural communities, everybody knows
when mental health service is sought for a child.
Consequently, they felt that it was safer to make visits
to health care professionals at night. The stigma
included being “ labeled ” or “ pegged, ” and families
felt that once the label is conferred, it remains.
Although the small size of the community and the
tendency for most individuals to be on a fi rst-name
basis contribute to diffi culties in maintaining
anonymity, it also plays a role in the positive intimate
and close-knit feel of the community. The importance
of “ word of mouth ” and the supportiveness of the
community emerged as facilitators to mental health care
(see Small Size and Word of Mouth sections below).
Lack of Information. Lack of awareness of the
availability of mental health services was frequently
mentioned as a service barrier. This occurred despite
the work done by service providers to promote such
awareness. In the words of one participant
It would be awful handy to have a place where
somebody could actually open up a book and get
their kid help from there … actually steer me to
where I can go. There isn ’ t that … leaves parents
like myself wondering where do we go? What do
Financial Diffi culties. Accessing mental health
care for children was clearly affected by monetary
issues on a number of different levels. Unique to rural
communities is the need to travel great distances to
access care, which often entails having to take time off
work as well as the costs of gas, wear and tear on the car,
parking, meals, and sometimes hotel accommodation.
One participant said
They were very good at giving me time off, but it
meant no pay. And then if I ever wanted to apply
for full time there, my record would not be that
good. I was concerned about my work record so
I was giving up any opportunities to be able to
Personal Facilitators to Access and Utilization
Word of Mouth. The role of informal supports in
facilitating access to mental health care was apparent. It
was serendipitous that families discovered ways to
access services for their children.
Word of mouth is like wildfi re. It ’ s the number one
thing, it ’ s word of mouth. Word of mouth is
valuable, invaluable. Indispensable.
You have to fi nd it yourself. I learned about Dr L.
from a lady I work with who has two kids with
disabilities. She got me going to Dr L.
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Boydell, Pong, Volpe, Tilleczek, Wilson and Lemieux 185 Spring 2006
Advocacy. Being a “ squeaky wheel ” often resulted in
greater attention and facilitated entry to service. Some of
the words used to describe this advocacy work by family
members were “demanding,” “very vocal,” “fi ghting tooth
and nail,” “convincing,” “getting angry,” “yelling and
screaming,” “knocking down doors,” “raising Cain,” “being
rude,” “persisting,” “bugging,” “go getting,” “pushing,”
“calling around,” “researching it,” “writing letters,” “following
up,” “complaining,” and “going to the top.” Families faced
the inherent tension between advocating to obtain help for
their child and being thought of as a “ pain in the butt. ”
The latter was seen as possibly making things worse.
We were very vocal and people have hated me in
that school from day one, I have no doubt.
Because they are overworked or overloaded or
whatever, so if you don ’ t make a noise, you don ’ t
get … the squeaky wheel gets the oil, you know.
Parents acknowledged that they frequently did not
get services because they did not push hard enough.
This lack of advocacy was often the result of many
factors, including personal style, lack of education, and
lack of time due to work obligations, and the parenting
of other children.
Systemic Barriers to Access and Utilization
Human Resources. A frequently cited systemic
barrier to accessing children ’ s mental health care in
rural communities was shortages of human resources.
Recruitment and retention of children ’ s mental health
specialists and the shortage of specialized services such
as psychological testing contributed to long waiting
lists and out-of-town referrals. Family members
indicated that “ any help at all would have been
acceptable. ” They were not necessarily looking for a
We are limited to a select few physicians who are
horribly overloaded, overworked …
Children were seen by a wide variety of practitioners.
These visits were mostly “ brief encounters ” of just 1-3
sessions, with practitioners frequently concluding that
the presenting problem was just a developmental
phase. This was very frustrating for families because
they knew that their child was not fi ne. The practitioners
did not live day-to-day with the child, and families
often felt that their expertise and experience were
ignored or undervalued.
Policy and Funding Issues. Study participants
indicated that federal, provincial, and local policies
interfered with the ability to easily access services.
Service programs often adhered to rigid intake criteria.
For example, the issue of age was often raised as a
problem in service access.
Once she hit the magic age of 16, there ’ s nothing …
too young for adult service, too old for kid ’ s services.
I know other moms with kids who are between 16
and 18 and who are pulling their hair out. These
kids are totally depressed, they are not going to
school, and they ’ re addicted to drugs. They can ’ t
get any help. None, you know? So, it ’ s really, really
maddening living out here for this reason and I
was thinking of moving for that sole reason …
Waiting Time. Wait times for mental health services
are pervasive in rural communities. All regions in the
current study had waiting lists. The length of time
spent on a wait list varied from a few months to
For someone working in the fi eld, a month just fl ies
by. But for me, as a parent, dealing with a child
everyday who doesn ’ t want to live and who
doesn ’ t want to eat and who doesn ’ t go to school,
you know, every day is a huge challenge.
Several participants were able to access mental
health care more readily under certain conditions; at
times of crisis, for example, if the child was a harm to
itself or others or suicidal. In these cases, “ jumping the
queue ” occurred.
In grade 2, [child] brought a knife to school. It was
probably one of the best things she did because
then other people got involved. People jumped up
and said “ what ’ s going on here? ”
Invisibility. Many interviewees addressed the
diffi culty of dealing with children ’ s mental health
issues. These problems are not physical, hence often
not readily visible. This results in diffi culties in
accessing help for something that is not tangible. The
importance of obtaining a diagnosis cannot be
minimized. However, paradoxically, once labeled,
there is the problem of lasting stigma.
People have more sympathy for people when they
have a physical impairment and you can identify it
when you look at them.
… and because it ’ s invisible, it ’ s hard for it to be
looked at as a disability … I wish there was more
information for the public to understand …
Systemic Facilitators to Access and Utilization
Delivery of Personalized Services. The characteristics
and fl exibility of rural service providers reduced
personal, systemic, and environmental barriers such
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The Journal of Rural Health 186 Vol. 22, No. 2
as stigma, cultural differences, distance, and human
resource shortages. Service providers were described as
being “ good people, ” “ good to us, ” “ open minded, ”
“ taking time, ” “ going above and beyond the call
of duty, ” “ being there when needed, ” and “ a real
godsend. ” Participants said there was a perceptible
willingness to accommodate the needs of parents and
children, to go where the family was located, to
provide transportation to clients (personally or through
volunteer drivers), and to make home visits and offer
services on nights/weekends. This was often necessary
in order to keep families engaged.
So I mean the clinic itself is phenomenal, her
counselor is very good. He ’ s very nice. Thursday
night I called him at his own home to talk to him to
get some advice on what to do and he called back
later in the evening to fi nd out how she was doing.
He ’ s very accessible. He ’ s told us actually right
from the beginning that if there was any problems
after-hours that we could call him at home … He ’ s
always been more than courteous and encouraging
towards both of us.
Offering Services in Local Communities. The
interviews suggested that services offered locally
mitigate personal, systemic, and environmental
barriers. In terms of personal barriers, it is less
disruptive to families, more convenient, and there is
greater acceptance of local programs. Hiring locally is
also more culturally acceptable, and retention rates
tend to be higher. Most importantly, local programs
allow children to remain with their parents in the
community. Furthermore, it is easier for a service
provider to visit a number of families in their local
community rather than have families go to a central
offi ce. It is helpful for service providers to see families
in their natural environment. Home visits develop
relationships between families and service providers,
building trust and rapport. Local services allow for
more intense delivery of services and deliver better
care since one is accountable to local citizens, resulting
in an increased commitment to the community. Finally,
local service delivery decreases barriers to service (eg,
by reducing long-distance traveling) and encourages
program participation, particularly programs offered
in schools .
Environmental Barriers to Access and Utilization
Distance. Families identifi ed diffi culties in
accessing needed services located at great distances
from their home communities. Access to out-of-town
services was further hindered by adverse weather
conditions in winter, travel costs, lost wages, and
lack of public or private transportation. Other
diffi culties include the assumption that families have
a car, the added stress of travel, and the negative
impact of an unfamiliar location on the child or
Travelling is a barrier. Here, you can pretty much
do it only in the summer. Sometimes, they expect
you to go in the winter, and I have to tell them
‘ sorry, I ’ m not a winter driver, I can ’ t do it ’ .
You ’ re exhausted taking a child to see someone on
a two-hour drive. Well, they ’ re either exhausted by
the time they get there or they ’ re all wound up.
Like, it ’ s not their normal.
Environmental Facilitators to Access and
Small Size. Living in a small community can assist
parents in their efforts to seek help for their children.
An active community presence and long-established
relationships with service providers lent credibility to
parental claims that something was wrong with their
In one sense, it ’ s wonderful because it ’ s more
personalized. The counselor will drive down and
pick up your kid at school and take her out for
lunch for her counseling.
There was also frequent mention of being on a fi rst-
name basis with other community residents. The
natural emotional and practical support system in such
communities was critical to sustaining good mental
Discussion and Recommendations
Recommendations made by the parents
participating in this study were varied, but several
common themes emerged including the need for local
accessibility to services and supports, integration, early
intervention, education and promotion, school and
child care, parental support, and a rural approach to
service delivery. Although some innovative programs
exist in these rural communities, ostensibly to address
the barriers described by family members in this study,
they remain sporadic and underfunded. They do,
however, offer an excellent platform from which to
promote and expand existing successful intervention
mechanisms. For example, in one community, the
school system was integrated into the mental health
system as the site of problem recognition and
intervention. In the area where this occurred, family
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Boydell, Pong, Volpe, Tilleczek, Wilson and Lemieux 187 Spring 2006
members spoke of its success. In the United States, the
system of care movement has been used in both rural
and urban communities to overcome many of the
barriers to mental health care. 15-18 In response to this
movement, innovative intervention programs for youth
in rural communities have emerged that stress the
reduction of stigma, the importance of home-based
services, the involvement of children and youth in
service planning and implementation, as well as the
integration of family and community services sectors,
for example, the child welfare, mental health, and
education systems. 15
The route to mental health care for children in rural
communities is complex, constantly changing, and
nonlinear. It is more like a labyrinth or a tangled web
than a pathway. Although faced with multiple
roadblocks, there are also factors that help minimize
these barriers. Service providers and family members
are constantly negotiating a web of ongoing tensions,
struggles, and contradictions that permeate their
attempts to access mental health care for children. We
found Montgomery and Baxter ’ s 19 notion of “ dialectic
tension ” useful when examining the competing
thematic categories. Most factors identifi ed as a barrier
were also, under different circumstances, a facilitator.
Our analysis clustered around the contrasts,
contradictions, and paradoxes present throughout the
For example, the small size of communities was
often mentioned as a reason for ease of access to care
through word of mouth in a close-knit community. This
notion of a more supportive rural community has been
noted. 20 On the other hand, the small size of the
community contributes to the lack of anonymity and
concerns about stigma associated with mental illness.
Particular challenges have been identifi ed in
maintaining anonymity and boundaries between
service providers, family caregivers, and clients that
may be signifi cantly different from those found in an
urban setting. 21 Rural communities are thought to be
especially apt to create stigma for mental health service
clients and their families. 22 This “ glare of rural
familiarity ” 23 could contribute to the reluctance of some
people to use mental health services. The fear of being
seen is frequently an important issue related to the
decision to avoid seeking mental health services. 24 In
fact, stigma has been cited as one of the greatest
obstacles to the treatment of mental illness. 17 The World
Psychiatric Association ’ s global antistigma program
has shown positive outcomes resulting from their
process for setting up antistigma projects in local
communities. 18 This process includes establishing a
local action committee, conducting a survey of sources
of stigma, selection of target groups, messages and
media, and evaluation of the impact of interventions.
Rural communities clearly differ from urban
communities in some respects. What works in
facilitating access to children ’ s mental health services
in urban centers may not work in rural communities. In
addition, the assumption of a rural homogeneous
reality masks the diversity and uniqueness of rural
communities. While emphasizing the common themes
prevalent in family member narratives across different
rural communities, we have attempted to highlight the
richly textured experiences that each participant shared
with us. It is hoped that future research in this area
will also recognize the rich narratives that family
members can provide regarding their access to mental
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