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Linking Low-Income Families to Children's Mental Health ServicesAn Outcome Study



An intervention designed to address barriers that interfere with access to children's mental health services for low-income families was implemented in three Oregon counties; four other counties were included as a comparison condition. The intervention involved the use of paraprofessionals called Family Associates who provided families with information, emotional support, and tangible assistance to reduce barriers to services. Families in the intervention group (n = 96) were significantly more likely to initiate children's mental health services than were those in the comparison group (n = 143); however, the groups did not differ in their rates of appointment attendance or discontinuing services prematurely. A modest but significant difference between the groups was found for family and service system empowerment, with the intervention families reporting higher levels of empowerment at post-test. The barriers to children's mental health services experienced by the intervention families and the barriers for which Family Associate services were provided are described.
Linking Low-Income Families to Children's Mental Health Services: An Outcome Study
Contact: Nancy Koroloff, Regional Research Institute, Portland State University, PO Box 751, Portland, OR 97207.
An intervention designed to address barriers that interfere with access to children's mental health services
for low-income families was implemented in three Oregon counties; four other counties were included. as a
comparison condition. The intervention involved the use of paraprofessionals called Family Associates who
provided families with information, emotional support, and tangible assistance to reduce barriers to services.
Families in the intervention group (n = 96) were, significantly more likely to initiate children's mental health
services than were those in the comparison group (n = 143); however, the groups did not differ in their rates of
appointment attendance or discontinuing services prematurely. A modest but significant difference between the
groups was found for family and service system empowerment, with the intervention families reporting higher levels
of empowerment at posttest. The barriers to children's mental health services experienced by the intervention
families and the barriers for which Family Associate services were provided are described.
Although significant progress has been made in developing mental health services for children with
emotional disabilities, these improvements become pointless when children and their families cannot gain access to
such services. Families may be discouraged from accessing services for a variety of reasons, including service
system complexities related to referrals and admission criteria, pragmatic constraints in such areas as transportation
and child care, and limitations in knowledge about how best to use available resources. A less appreciated
impediment to accessibility is the daunting experience of encountering the mental health system for the first time.
Families who have had little to no experience with the system may be discouraged from following through with
appointments because of a fear of being stigmatized, feelings of isolation, and a general sense of being
overwhelmed. The combined effect of various impediments may contribute to not initiating services or dropping out
of them early in the treatment process; consequently, children and families whose needs may be particularly
complex and acute do not get the help they need.
The evaluation of an intervention designed to address barriers that impede access to children's mental
health services for low-income families is described in this article. The approach involved the use of
paraprofessionals called Family Associates who served as system guides, providing families with information,
emotional support, and help with specific barriers such as lack of transportation and lack of child care for other
children. The Family Associates were themselves parents who had negotiated service systems on behalf of their own
children and who had received special training. In the following sections, research on why families discontinue
mental health services and the areas of empowerment and paraprofessionals as related to the Family Associate
intervention are reviewed.
Service Continuance
Although a lot of research has been devoted to the issue of service continuance in mental health services,
there is great variation in reported rates. Estimates of noncontinuance (i.e., dropout) vary widely, depending on the
definition of dropout used and the phases of the intake and treatment process considered. For children in mental
health settings, estimates of dropout rates range between 25% and 93% (Mannarino, Michelson, Beck, & Figueroa,
1982; Sirles, 1990; Wierzbicki & Pekarik, 1993).
Just as the dropout rates for mental health treatment vary widely from study to study, so too do the
explanations offered. Much of the focus has been on the role of demographic variables. For example, in a review of
86 articles, Garfield (1986) reported that dropout rates for adults and children were related to such demographic
variables as lower socioeconomic status, low level of education, and minority racial status. Similarly, a recent
meta-analysis of 125 studies (Wierzbicki & Pekarik, 1993) identified these variables as important predictors of
dropout for child and adult clients. Although the preponderance of these studies suggests a link between
demographic characteristics and tendency to drop out of service, other researchers have noted that demographic
characteristics, especially income, are not consistently related to continuance (Day & Reznikoff, 1980; Sirles, 1990;
Sledge, Moras, Hartley, & Levine, 1990) or are not as important as service delivery system issues (Goldin, 1990;
Good, 1990; Sirles, 1990; Wise & Rinn, 1983).
In children's mental health services, the severity of problems appears to influence service continuance.
Sirles (1990) reported that children with less severe problems were more likely to drop out of service, especially if
the assessment process was prolonged. Lochman and Brown (1980) found that parents who dropped out of a parent
education program initially were happier with their family and their own child management skills than parents who
completed the program. This is in contrast to some studies of adult populations, where increased severity of
symptoms has been related to dropping out (Chesney, Brown, Poe, & Gary, 1983; Swett & Noones, 1989).
Additionally, there is evidence that the mental health problems of parents and other parental characteristics may
interfere with the process of seeking help (McMahon, Forehand, Griest, & Wells, 1981; Pekarik & Stephenson,
A significant step in the study of service continuance has been the shift in focus from demographic
characteristics of the service recipient to service system barriers and pragmatic day-to-day constraints. Researchers
have increasingly focused on barriers related to affordability (Lorefice, Borus, & Keefe, 1982; Sharfstein & Taube,
1982; Takeuchi, Leaf, & Kuo, 1988); transportation and child care (Margolis & Meisels, 1987; Temkin-Greener,
1986); accessibility (Acosta, 1980; Cohen, 1972; Graziano & Fink, 1973; Stefl & Prosperi, 1985 ); and system
characteristics such as the availability of services (Leaf, Bruce, Tischler, & Holzer, 1987; Scott, Balch, & Flynn,
1984; Stefl & Prosperi, 1985), hours of operation and configuration of services (Good, 1990; Margolis &
Meisels,1987; Sledge et al., 1990), and delays in scheduling appointments (Leigh, Ogborne, & Cleland, 1984; Sides,
Low-income families are particularly challenged by difficulties in meeting basic daily living needs, which
can interfere with accessing and continuing in services for their children. In a study of children with developmental
disabilities who had been screened through Early and Periodic Screening, Diagnosis, and Treatment (EPSDT),
Margolis and Meisels (1987) identified three sets of barriers to services: (a) content barriers such as problems with
the design and organization of the screening process, as well as sensitivity of the screening process to the needs of
children with disabilities; (b) facilities-personnel barriers such as a lack of public awareness of EPSDT, lack of
transportation, and lack of sensitivity and knowledge about developmental disabilities on the part of health-care
professionals; and (c) referral barriers such as a lack of qualified providers and parents' inability to pay for
additional services not reimbursed by Medicaid. Other research on barriers to services has suggested that efforts to
address the problem of service discontinuance are best served by a pragmatic approach that applies solutions at a
direct, functional level (Manela, Anderson, & Lauffer, 1977; Meisels & Margolis, 1988). Moreover, the multiplicity
of potentially important barriers implies that intervention efforts must take a broad, flexible approach that addresses
the particular circumstances of individual children and their families.
Although the concept of empowerment has been in use for some time, only recently have efforts been made
to define and measure it as a construct that lends itself to outcome evaluation (Hefflinger, 1995; Koren, DeChillo, &
Friesen, 1992; Singh et al., 1995). Empowerment may be generally defined as "the ongoing capacity of individuals
or groups to act on their own behalf to achieve a greater measure of control over their lives and destinies" (Staples,
1990, p. 30): This general notion can be conceptualized in a number of different ways. For example, Koren et al.
(1992) adapted the concept to children's mental health and suggested three major domains: the immediate family,
the service system as it directly affects the child and family, and the community as it affects children and families in
general. Family members may express empowerment in each of these separate areas. Empowerment within the
family pertains to a sense of efficacy in handling difficulties at home; empowerment with respect to the service
system can be manifested as taking action to obtain appropriate services for one's own child; and community
empowerment can take the form of activities that improve services for families and children in general.
This view of empowerment has direct relevance to service utilization. To the extent that services are
successful in helping families address difficulties with their children, parents' feelings of empowerment within their
own families may be expected to grow. Also, the knowledge and understanding gained through experience with the
service system may lead parents to experience a greater sense of empowerment as informed consumers and as
advocates for system improvements. In this study, the process of helping families overcome barriers to service
utilization was viewed as possibly leading to an increased sense of empowerment.
A long history of employing paraprofessionals to assist with service delivery has existed in the fields of
health care (Dawson, Van Doorninck, & Robinson, 1989; Poland, Giblin, Walter, & Hankin, 1992; Sparer &
Johnson, 1971), education (Frith & Lindsey, 1980; Jones & Bender, 1993), and mental health (Durlak, 1973;
Gartner, 1981; Karlsruher, 1974). A number of researchers have examined the functions that paraprofessionals have
served. Sobey (1970) studied 10,000 paraprofessionals and found that they performed three major functions:
therapeutic, special skill training, and community adjustment. In addition, she cited five less frequent functions: case
finding, orientation to services, screening, caretaking, and community improvement. She concluded that
paraprofessionals were employed "not simply because professional manpower is unavailable, but rather to provide
new services in innovative ways" (p. 133). Frith and Armstrong (1984) identified a number of reasons for expanding
the use of paraprofessionals, including versatility in working within different settings, the ability to work with highly
diverse groups, an established track record in efficacy studies, cost effectiveness, and greater availability compared
to professional staff, particularly in rural areas. They emphasized the usefulness of the paraprofessional as an
intermediary between service providers and the community.
The purpose of using paraprofessionals in this study was (a) to increase the number of families who, once
referred for children's mental health services, actually initiated those services, and (b) to encourage service contin-
uance. The Family Associate role was created to address the major problems associated with children's mental
health service initiation and continuance, particularly those that low-income families might encounter. These
barriers included the costs of travel and child care associated with frequent appointments, limited information about
the service system, problems accessing community resources, unmet caregiver needs, and the challenges of daily
living within poverty. The intervention was intended to ultimately increase the number of families who received
mental health services for their children. This was accomplished by working with the families to reduce the barriers
to service involvement. More specifically, the research focused on whether the Family Associate services increased
(a) children's mental health service initiation, attendance, and continuance, and (b) empowerment of parents or other
caregivers. Additionally, we were interested in describing the barriers to children's mental health services
encountered by families and the extent to which the Family Associate intervention addressed them.
Families with a child 4 to 18 years old who had been referred for mental health services through EPSDT
were included if: (a) the referred child was not in an institutional placement (e.g., residential treatment, correctional
facility), (b) a caregiver was involved in the management of the child's mental health services and was available for
the research interviews, and (c) the referred child had participated in no more than three mental health services
appointments associated with this referral. Some families who agreed to participate in this study were excluded
because (a) no follow-up interview was completed (n = 14), (b) the respondents were foster parents whose resources
and mental health service system experiences were different from those of the other families (n = 16), (c) the family
was identified as ineligible after performing the initial interview (n = 12), or (d) no contact with the Family
Associate occurred beyond the initial interview (n = 15). This resulted in a final sample of 239 families, 96 of whom
received the intervention and 143 of whom served as comparison families.
The respondents in the intervention group were primarily birth parents (91%), single parents (74%), and
educated at the high school level or higher (78%). Over half of the children in the intervention group who were
referred for mental health services were boys (61%), with the majority being White (82%) and 4 to 12 years of age
(88%). Over two thirds of the families had an annual household income of less than $10,000 (71%) and an annual
household income per person of less than $3,000 (72%). Most of the families (74%) lived within 9 miles of the
mental health center to which they were referred (see Table 1). The comparison group was not significantly different
from the intervention group on any of these demographic characteristics.
Design. This research employed a quasi-experimental design incorporating two conditions: (a) an interven-
tion condition in three Oregon counties using Family Associates (one in each county) to augment the usual mental
health services, and (b) a comparison condition in four other Oregon counties consisting of only the usual mental
health services. No condition involved the withholding of services; instead the intervention condition supplemented
the services families would have otherwise received under EPSDT. The assignment of counties to either the
intervention or comparison groups was made randomly from three pairs of matched counties that were
approximately equal in population density and proximity to metropolitan areas with extensive and specialized
mental health services. Later in the project, a seventh county was added to the comparison condition to augment
Intervention. The Family Associates were employed by their respective county mental health programs and
received referrals through the EPSDT process. In order to intervene early in the service initiation process when
dropout was most likely (Baekeland & Lundwall, 1975; Larsen, Attkisson, Hargreaves, & Nguyen, 1979; Sirles,
1990) the Family Associates contacted the parents or other family members soon after the referral for mental health
services was made. The most common Family Associate services were (a) providing families with information, (b)
providing caregivers with social and emotional support, and (c) linking families to community resources and ser-
vices. An innovative feature of this intervention was the availability of a flexible cash fund. The purpose of this fund
was to help families obtain those services or items that were identified as instrumental in getting their children to
mental health services or in easing their daily living burden.
As they modeled new skills and collaborated with the caregivers, the Family Associates encouraged
self-reliance and supported family strengths, concepts emerging in consumer and practice research (Koren et al.,
1992). A more detailed description of the Family Associate role and the implementation of the intervention can be
found in Koroloff, Elliott, Koren, and Friesen (1994).
Data Collection. Procedures for obtaining the EPSDT referral information were established separately with
each of the participating counties. Referrals were usually collected at medical facilities, schools, mental health
agencies, the county mental health and health programs, or a combination of these sites, depending upon the primary
referral sources) for a given county.
Upon receipt of a referral, an introductory letter and flyer were mailed to the family, followed by a
telephone call to further explain the research project. If the caregiver agreed to participate, an appointment for the
initial research interview was made, with the option of the interview taking place at the caregiver's home for her or
his convenience. After securing the caregiver's informed consent, the initial interview and associated questionnaires
were completed (approximately 1/2 hours). The caregiver was paid $25 for providing the information.
The Family Associates began their initial interviews by collecting research data; Family Associate services
were discussed only after the research interview was completed. Initial interviews with comparison families, as well
as all of the follow-up interviews, were conducted by research interviewers. Extensive instruction in data collection
and research interviewing was incorporated by the research team into the project orientation and training meetings
for the Family Associates; it was provided separately by the project manager for the research interviewers. Periodic
meetings were held to monitor the integrity of the data collection process.
The Family Associates worked with the families until the referred child had participated in three mental
health appointments, or for 3 months, whichever came first. Approximately 3 to 4 months after the first interview,
caregivers were contacted to schedule the follow-up interview. This interval allowed enough time for Family
Associate services to be completed and also offered an opportunity for mental health services to be initiated. At the
follow-up interview, caregivers were asked about experiences in the intervening period and completed a second set
of questionnaires. For doing this, each respondent received another $25.
The data collection protocol included both widely used and newly developed measures. In order to meet the
needs of the large Hispanic population in Oregon, all of the questionnaires were translated into Spanish, and
Spanish-speaking interviewers were available to conduct the initial and follow-up interviews. Presented next are
brief descriptions of each of the assessment tools used.
The initial interview gathered information about (a) child and family demographics; (b) previous mental
health services received by the referred child and the respondent, as well as the respondent's satisfaction with those
services; (c) barriers to mental health services previously experienced; (d) the respondent's experiences throughout
the current referral process; and (e) barriers anticipated regarding involvement in the services for which the child
was referred. The follow-up interview measured (a) changes in child and family demographics; (b) the mental health
services the child and/or the family had received, their satisfaction with those services, and barriers to the services
experienced by the family; and (c) utilization and assessment of either the Family Associate services (intervention
families) or assistance the family could have used to facilitate the process of initiating mental health services for
their child (comparison families).
Based on the information gathered during the follow-up interview, families' involvement in mental health
services was assessed. A family was defined as having initiated children's mental health services if at least one
appointment was kept after the EPSDT referral was made. Continuance was defined as still receiving recommended
treatment at the point of the follow-up interview. Conversely, dropout was defined as discontinuing treatment before
the follow-up interview. Families were not considered dropouts if the therapist decided that treatment was com-
pleted or if the family decided to discontinue mental health services because the child had improved and no longer
needed treatment.
The Family Empowerment Scale (FES; Koren et al., 1992) was used to measure the level of the
respondent's sense of empowerment at both assessment points. This 34-item self-report scale presents the respondent
with a 5-point Likert scale for each item (1 =not true at all, 5 = very true). Responses are grouped into three
empowerment subscores: family (e.g., "I know what to do when problems arise in my family"), service system (e.g.,
"I know what services my child needs"), and community/ political (e.g., "I feel I can have a part in improving
services for children in my community").
The Family Barriers Checklist was developed for this project in order to assess the barriers to children's
mental health services experienced by the respondent. This measure uses a 4-point Likert scale (1 =not important, 4
=very important) and asks the respondent to rate the degree to which each of 13 areas (e.g., transportation to mental
health services, child care for other children during mental health appointments, information about mental health
services) poses a barrier to service involvement. Intervention families also were asked to identify "each area you
worked on with your Family Associate" and to rate how much the Family Associate services, in general, were
needed by their family (1 = not at all, 4 = very much).
Two additional instruments were included in the pretest to assess the comparability of the intervention and
comparison groups. The Child Behavior Checklist/4-18 (CBCL; Achenbach, 1991) was used to measure the level of
each child's behavior problems from the caregiver's perspective. The CBCL is a 118-item rating scale completed by
an adult that assesses the emotional and behavioral adjustment of children. The scale provides a total problem score,
two syndrome scores (externalizing and internalizing), and eight problem subscales. Of the CBCL scores available,
those pertaining to total, internalizing, and externalizing behavior problems were included in this study. Family cop-
ing strategies were measured from the respondent's perspective with the Family Crisis Oriented Personal Evaluation
Scales (F-COPES; McCubbin, Olson, & Larsen, 1991). The F-COPES is a 30-item rating scale that identifies
problem-solving strategies used by families in difficult situations. It provides six subscores: acquiring social support,
refraining, seeking spiritual support, mobilizing the family to acquire and accept help, passive appraisal, and support
from neighbors.
Comparability of Groups
Group comparisons (t tests, chi-square analyses) revealed that the families included in the intervention (n =
96) and comparison (n = 143) groups were not significantly different on any of the family characteristics listed in
Table 1. Additional group comparisons on the three CBCL scores, the six F-COPES scores, and the pretest FES
service system and community/political empowerment scores also showed no significant differences (see Table 2).
However, the initial means on the FES family subscale were significantly different for the two groups (p < .05), with
the intervention group reporting a lower level of family empowerment than the comparison group.
Sample Characteristics of Intervention and Comparison Groups
Intervention group
Comparison group
Characteristic n % n %
Respondent’s relationship to child
Birth parent 87 91 128 90
Other 9 9 15 10
Respondent’s marital status
Single parent
71 74 93 56
Married 25 26 50 35
Respondent’s educational level
No high school diploma 21 22 30 21
High school diploma 36 37 42 29
Beyond high school 39 41 71 50
Child’s gender
Female 37 39 57 40
Male 59 61 86 60
Child’s age
4-7 years 42 44 71 50
8-12 years 42 44 54 38
13-18 years 12 12 18 12
Child’s race
White 79 82 114 80
Other 17 18 29 20
Annual household income
<$10,000 68 71 96 67
$10,000-$19,999 21 22 38 27
$20,000+ 7 7 9 6
Annual household income per person
<$2,000 26 27 33 23
$2,000-$2,999 43 45 69 48
$3,000-$4,999 19 20 30 21
$5,000+ 8 8 11 8
Distance to the mental health office
1 mile
19 20 25 18
2-4 miles 29 30 36 26
5-9 miles 23 24 40 29
10-19 miles 13 13 20 15
20+ miles 12 13 16 12
n = 96.
n = 143.
Includes respondents who were divorced, separated, widowed, or
never married.
Table 2
Group Comparisons on CBCL, F-COPES, and FES Scores Measured at Initial Interview
Intervention group
Comparison group
Internalizing T 63.0 12.9 62.7 11.1 .24
Externalizing T 65.1 12.1 63.9 11.5 .76
Total T 65.5 11.7 65.5 10.1 .03
Social support 24.4 6.6 25.4 5.9 1.29
Reframing 29.7 5.1 30.1 5.0 .59
Spiritual support 13.0 4.1 12.9 4.7 .06
Mobilization 12.4 2.5 13.0 1.8 1.79
Passive appraisal 15.1 3.2 15.4 2.9 .8
Support from neighbors 7.4 3.2 7.3 2.7 .15
Family 45.6 7.1 47.6 6.4 2.29*
Service system 49.6 5.8 49.4 6.0 .16
Community/political 27.8 7.3 28.9 7.7 1.08
. CBCL=Child Behavior Checklist/4-18; F-COPES=Family Crisis Oriented Personal Evaluation Form; FES=Family
Empowerment Scale.
< .05.
Table 3
Impact of Family Associate Services on Mental Health Service Participation
Intervention group
Comparison group
Initiated services 89 93 115 80**
Missed any appointments
(ie: attendance)
59 66 70 61
Discontinued services 24 27 31 27
**p< .01.
Table 4
Barriers Experienced and Barriers Addressed by Family Associate (FA) Services
Percentage of intervention families
Experienced barrier
Received FA services
Respite care 53 55 10 10
49 51 40 42
46 48 29 30
Emotional support
45 48 36 38
Paying for utilities 39 41 8 8
Child care
37 39 10 11
Daily living tasks
35 37 4 4
Information about
33 34 13 14
Information about
33 34 37 39
Clothing 31 32 10 10
Food 25 26 1 1
Contact with other
b, c
24 25 2 2
Obtaining benefits 17 18 3 3
n=96 (except where noted differently). Data are based on Family Barriers Checklist ratings provided by the caregivers.
Barriers have been abbreviated to fit into the table and should be interpreted as difficulty with the areas listed (e.g.,
lack of
respite care). EBD=Emotional and Behavioral Disorders; MHS=Mental Health Services.
based on combining the ratings of
slightly important, moderately important
, and
very important.
Contact with other parents who have children in mental health services.
Intervention Outcomes
Service Participation. Data regarding the impact of the Family Associate intervention on mental health
service participation were examined using chi-square analyses (see Table 3). Appointment attendance was treated as
a dichotomous variable (missed no appointments was scored as 0, missed any appointments was scored as 1)
because the time period was short and a variable based on proportion of appointments would be misleading (e.g.,
50% attendance could reflect missing 5 of 10 scheduled appointments or 1 of 2 scheduled appointments). The
intervention group was significantly more likely to initiate children's mental health services, X
(1, N = 239) = 6.94,
p < .01. The associated Yule's Q statistic was .51, suggesting a moderately strong relationship between the
intervention and initiation of services (Bohnstedt & Knoke, 1994). The groups did not, however, differ in attendance
(1, N = 204) =.63, p =.43, with roughly one third of both groups missing no appointments, nor did they differ in
discontinuing mental health services prematurely X
(1, N = 203) =.002, p = .96, with less than one quarter of both
groups dropping out of services.
To investigate the possibility that initial sample characteristics might have accounted for the significant
difference in service initiation rather than the intervention, a hierarchical logistic regression was performed. Six
variables representing sample characteristics were entered into the equation first, followed by a dichotomous
variable representing the intervention/comparison distinction. The variables were
1. Respondent’s years of education;
2. Child’s race (White or Other);
3. Annual household income;
4. Miles to mental health services;
5. CBCL total problem behavior score;
6. FES family empowerment score.
These six variables were chosen on the basis of heir importance in previous studies or, in one instance (FES
family empowerment score), on a significant difference between the intervention and comparison groups at the
initial interview. Although the model chi-square for the combination of family characteristics was significant, X
N = 239) = 12.74, p < .05, the addition of the intervention/comparison variable significantly improved the model,
(1, N = 239) = 6.28, p < .05. The R statistic associated with this variable was .14 (p < .05 ), whereas only one
other R statistic—that for respondent education—was significant (R = .13, p < .05). This pattern of findings sug-
gested that receiving Family Associateservices was significantly associated with services initiation after the effects
of various sample characteristics had been taken into account and that a higher level of respondent education was
also associated with service initiation.
Levels of Empowerment. To examine levels of empowerment at follow up, analyses of covariance
(ANCOVA) were conducted on each of the three empowerment scores, with pretest scores serving as covariates.
The sample in these analyses was limited to those families who initiated services. Tests for heterogeneous regression
slopes were nonsignificant, suggesting that the use of common slopes here was appropriate. Because ANCOVA
procedures applied to quasi-experimental data potentially yield biased results due to covariate measurement error
(Huitema, 1980; Pedhazur, 1982; Pedhazur & Schmelkin, 1991), parallel analyses were also performed with
true-score corrected covariates (Huitema, 1980). Separate analyses were based on covariates corrected with alpha
coefficients and with pooled within-group test-retest coefficients. The results from these analyses indicated modest
but significant differences in both family and service system empowerment between the intervention and
comparison groups. For family empowerment, adjusted posttest means based on the standard ANCOVA were 47.6
and 46.4, F(1, 200) = 7.99, p < .01, eta
= .03, for intervention and comparison groups, respectively. For service
system empowerment, adjusted posttest means based on the standard ANCOVA were 50.9 and 49.3, F(1, 200) =
4.43, p < .05, eta
= .02, for the intervention and comparison groups, respectively. No significant differences were
found with respect to community/political empowerment.
Barriers to Children's Mental Health Services
One of the goals of this research was to describe the barriers experienced by the intervention families and
those addressed by the Family Associate services. As illustrated in Table 4, the barriers most commonly experienced
by the intervention families were (a) lack of respite care (55%), (b) transportation problems (51%), (c) lack of
recreational opportunities (48%), (d) lack of emotional support (48%), and (e) difficulty paying for utilities (41%).
Of all these barriers, the Family Associates most frequently addressed the lack of information about mental health
services, transportation problems, the lack of emotional support, and the lack of recreational opportunities. Notably,
Family Associate services were able to meet the needs of client families in only one area—lack of information about
mental health services.
The aim of this study was to test the effectiveness of using paraprofessionals who provide outreach,
information, and support to families initiating children's mental health services following an EPSDT referral. The
intervention provided by the Family Associates was effective in helping families initiate mental health services.
Families were more likely to make and keep a first appointment at the mental health clinic if they had received
supportive services from the Family Associate. The effect of the intervention was moderate, as would be expected
with an intervention of relatively low intensity and short duration. When considered with other variables, the effect
of the intervention was similar in size to the effect of caregiver education on service initiation. This finding
regarding caregiver education is consistent with other studies (Garfield, 1986; Wierzbicki & Pekarik, 1993). The
finding that the intervention predicted service initiation, while controlling for demographic characteristics, provides
support for the general effectiveness of the intervention.
The Family Associate intervention did not increase the likelihood that families would maintain
uninterrupted attendance at clinic appointments. Both intervention and comparison families missed some
appointments, and there was minimal difference between the two groups with regard to the pattern or frequency with
which appointments were missed. About 33% of both groups missed no appointments; about 20% missed more than
two clinic appointments. These families clearly faced barriers to regular attendance that the Family Associate was
unable to address. Because the Family Associate intervention was intentionally constructed to cover a short time at
the beginning of treatment, a longer period of intervention may be necessary to address the needs of families who
continue to have difficulty attending appointments on a regular basis.
The Family Associate intervention did not increase the likelihood that families would continue in treatment
until it was completed. The dropout rate for families in this study fell between 20% (comparison families) and 24%
(intervention families). This rate is at the low end of the range of dropout rates cited in the literature. For example,
Wierzbicki and Pekarik (1993) reported a mean dropout rate of 46.81% over 16 studies, and dropout rates between
25% and 35% are regularly reported in the literature (Day & Reznikoff, 1980; Forehand, Middlebrook, Rogers, &
Steffe, 1983; Mannarino et al., 1982). However, the dropout rate reported in the present study is even more
impressive when considering the generally low income level of these families, a characteristic frequently associated
with higher rates of dropping out of treatment (Baekeland & Lundwall, 1975; Garfield, 1986; Wierzbicki & Pekarik,
Many explanations can be offered for the low dropout rate in this study. For example, the definition of
dropout used in this study excluded families that never initiated children's mental health services after a referral was
made. Including these families may account for higher rates reported in previous studies. In addition, the families
identified as continuing in treatment might have dropped out after the follow-up interview was conducted. Previous
research has established that dropout usually occurs in the early stages of treatment, commonly within the first 6 to
12 sessions (Baekeland & Lundwall, 1975; Pekarik, 1991). In the present study, approximately two thirds of the
families attended six or more appointments. Taken together, these points suggest that the 3- to 4-month time span
used in this study allowed plenty of time for dropout to occur for those families that initiated treatment near the
initial interview, but might have less accurately represented the discontinuance patterns of those who waited several
weeks before beginning services.
One of the important contributions of this study is the clear explication of the barriers families face while
initiating and continuing mental health services. Some of the barriers identified were due to the family's situation;
others were related to the organization of the mental health service delivery system. Intervention families most often
reported facing barriers with respect to finding respite care, transportation to services, appropriate recreational
opportunities, and emotional support, which is similar to findings of previous research on barriers to service
participation (Manela et al., 1977; Meisels & Margolis, 1988). The Family Associates were most successful at
providing help with transportation, information about emotional and behavioral disabilities, and emotional support.
They were less successful in meeting needs for respite care and child care, often because resources were not readily
available in the community for these services. In addition, families reported difficulties with circumstances that
usually are not associated with access to mental health services but can impede the family's ability to concentrate on
supporting their child's treatment. These included difficulty paying for utilities, problems with daily living, and lack
of sufficient clothing and food. Approximately one third of the intervention families identified these problems as
barriers to their involvement in mental health treatment, yet these were not circumstances that the Family Associates
were consistently able to alter. In the future, researchers need to address these areas of difficulty for low-income
families and evaluate strategies to reduce their impact on involvement in mental health services.
In addition to helping families get started in mental. health services, some conclusions can be drawn about
the Family Associate's ability to help families improve their sense of empowerment at both the family and service
system levels. Families in the intervention group scored significantly higher than families in the comparison group
on both family and service system subscales of the FES, although the differences were modest. These findings
suggest that paraprofessional outreach may do more than just get families into services: it may also have a positive
impact on families' sense of mastery and their ability to cope with difficult situations.
Given that significant findings emerged with an intervention of relatively narrow focus, there is consider-
able promise for expanded efforts in this regard. Additional outreach efforts to families, especially when coupled
with modifications to the service system, may substantially improve families' chances of accessing mental health
services. Most other investigators have examined accessibility from a perspective limited to family demographics
and service system issues. This research affirms the importance of adopting a broader view of families' lives when
addressing the problems of service accessibility.
As with any research carried out in a rapidly changing service environment, a number of limitations within
this study need to be considered. The Family Associate intervention took place in three counties with different
systems of referral, different access issues, and different treatment services. Even though the counties were matched,
as far as possible, on variables related to population density and service configuration, the differences among the
demonstration sites may have introduced an unknown bias into the results. A second limitation was the need to use
measures that were developed specifically for this study. For example, the concepts of dropout, attendance, and
continuance can be defined in different ways, making it difficult to compare these findings with other studies. A
third limitation concerned the small number of individuals implementing the intervention—one person in each of the
three counties. Individual Family Associates and counties were completely confounded; therefore, it was not possi-
ble to disentangle their separate effects. A more definitive test of the intervention would involve a greater number of
Family Associates within each demonstration site.
Future research on access to and dropout from mental health services should explore the importance of bar-
riers related to limited money and the stresses of daily living. In addition, more work needs to be done on the impact
of interventions such as the use of Family Associates, but with an expanded focus and over a longer period of time.
Our experience with implementing this intervention suggests that it would be even more effective if the Family
Associates were free to work with families throughout the process of mental health treatment. On a broader level,
there is an ongoing need for research on innovative interventions that approach longstanding accessibility problems
in novel and efficient ways. The Family Associate intervention represents a promising effort in this direction.
Authors' Note
This study was supported with funding from the Center for Mental Health Services, Substance Abuse and Mental
Health Services Administration, Grant No. MH49072-02.
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... Five studies that used study intervention designs other than RCTs (i.e., controlled clinical trials, prospective, retrospective designs) were evaluated with the Quality Assessment Tool for Quantitative Studies. Two studies were globally rated as weak (Guevara et al., 2016;Sprecher et al., 2018), two studies were rated as moderate (Kutash et al., 2011;Roth et al., 2016), and one study was rated as strong (Koroloff et al., 1996). ...
... Four studies focused on toddlers, with the average age ranging from 18.4 months to around 3 years (Feinberg et al., 2016(Feinberg et al., , 2021Guevara et al., 2016;Roth et al., 2016). The other four studies included ranges from school age (around 5 years) to adolescence (Koroloff et al., 1996;Kutash et al., 2011Kutash et al., , 2013Sprecher et al., 2018). All studies had majority male samples ranging from 60.5% to 83%. ...
... General Behavioral Health Services. Koroloff et al. (1996) examined how Family Associates (FAs; paraprofessionals) within a county mental health program could help families initiate mental health services following referral. Family associates contacted families immediately after a referral to offer information, provide emotional and social support, and link families to community resources and services (including the use of a cash fund to pay for supportive services). ...
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Introduction: Despite increased prevalence and identification of pediatric behavioral health concerns, families face many barriers when attempting to access behavioral health services. System navigators, or individuals experienced in navigating the health system, help to engage families in services by helping individuals overcome barriers for accessing care. However, limited research to date has systematically reviewed the implementation and effectiveness of navigation models in pediatric populations. Method: We systematically reviewed published studies examining navigation models for pediatric populations (up to age 18) referred to behavioral health services. We searched PubMed, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO for studies that evaluated a navigation model and included service use outcomes. We aggregated data pertaining to characteristics of the study and navigation model, service use outcomes, and implementation outcomes. Results: Eight studies met inclusion criteria. Families who participated in navigation services were more likely to complete diagnostic assessments and received an increased dosage (e.g., time spent, services completed) of behavioral health treatments. There was notable variability across studies in terms of processes involved in the navigation models. Discussion: Findings indicate that system navigation is a promising method for improving service use for pediatric populations referred to behavioral health services. Future research may continue to examine the effectiveness and implementation of the model, to best understand its benefits and what processes may contribute to improved service outcomes. Public Significance Statement: This paper reviews the effectiveness of system navigator models, which are designed to engage children and families in behavioral health services. The interventions reviewed are associated with increased behavioral health service use in children and show promise as a method of overcoming barriers to accessing behavioral health care. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
... Though it has not been directly examined among youth with ASD, parental advocacy has been shown to impact services and quality of care in other populations. Specifically, parental advocacy has been associated with children receiving more special education services (Burke et al., 2018;Rios et al., 2021) and better mental health services (Koroloff et al., 1996;Kutash et al., 2011). If parental advocacy predicts service access among youth with ASD, it can provide a potential point of intervention. ...
Lay abstract: It can be difficult for youth on the autism spectrum to get the services they need after they leave high school. Because of this, many studies have examined the different factors that are related to service access. These studies have shown that youth on the autism spectrum who belong to an underrepresented racial or ethnic group or whose families have lower incomes are less likely to receive the services that they need. However, it is difficult or impossible to change things like race/ethnicity or family income. It is important to also identify factors that might improve service access that we can change. One potential factor that fits into this category is parental advocacy activities. Using data collected from 185 parents of youth on the autism spectrum, we found that more parental advocacy activities were related to youth receiving more services, even after accounting for variables related to the functioning of the youth (e.g. whether they have an intellectual disability, their autism symptom severity) and demographic information about the family (e.g. state in which they live, parental race/ethnicity, and family income). Our findings suggest that building parental advocacy skills may be one important way to increase the number of services that youth on the autism spectrum receive as they transition to adulthood.
... Given the fragmentation and complexity of service systems for children and youth with disabilities, and difficulties families encounter navigating these systems, peer advocates and system navigators can be helpful. For example, the role of the family associate was reported to increase access to mental health services by low-income parents of young children and empowerment of parents (Koroloff, Elliott, Koren, & Friesen, 1996). These trained parents in paraprofessional roles provided outreach, information, resources, and support to parents who had been referred for early assessment services. ...
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Parents raising children and youth with special needs due to disability or compromised physical or mental health often find the exceptional care they provide results in caregiver strain and competes with workforce engagement. When parents disclose their family members' special needs and care demands to obtain support, they can also face workplace stigma. This chapter maps research on family care demands onto studies of available family support, workplace support, and community support that may mitigate challenges and improve employment trajectories. Additionally, a cross-national comparison reveals that policy supports for parents providing exceptional care are fragmented at best in three countries: Canada, the United Kingdom, and the United States. Finally, the chapter proposes systematic investigations that can uncover shifts in policy and practice with the potential to improve employment outcomes for this substantial segment of the workforce.
... Examination of parent empowerment and self-efficacy in response to F2F support shows more consistent positive effects. Parents who were randomly assigned to trained PSPs showed significantly higher family and service system empowerment (Koroloff, Elliott, Koren, & Friesen, 1996), greater increases in advocacy for mental health services (Kutash et al., 2011), and greater gains in feelings of self-efficacy (Rodriguez et al., 2011) than parents in comparison groups. Finally, in regard to caregiver well-being, Ireys and Sakwa (2006) examined the effectiveness of a 15-month F2F intervention for parents with a child in treatment for serious emotional or behavioral disorders. ...
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Peer delivered, family-to-family (F2F) support—defined as the provision of outreach, engagement, knowledge, care coordination, and support to family members of children and youth with mental health challenges—is a rapidly growing and needed component of the service array. Progress is occurring toward greater specification of program models and core competencies for the parent support providers (PSPs) with lived experience providing these services; however, strategies to inform quality improvement and ensure accountability are lacking. The Family Journey Assessment (FJA), completed by PSPs and family members, fills this gap by tracking caregiver progress toward self-advocacy and self-efficacy. Analyses of 436 FJAs showed a reliable 3-component structure, reflecting progress in the recognition of needs, collaboration to access help from formal and natural supports, and activation of skills to cope with stress, enhance resilience, and develop and carry out plans of care. PSP feedback provided strong evidence for relevance and usability. Examination of FJAs at baseline and follow-up provides one of the first reports showing significant improvement in key indicators of benefit of F2F for participating families. The FJA holds promise as a measure of the impact of F2F services on key goals and as a way to identify benchmarks for focused and individualized peer-to-peer support depending on the family’s level of need.
Youth with autism face challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services on behalf of their youth may be an effective way to improve service access and ultimately transition outcomes in this group. In this study, we tested whether participating in an advocacy intervention improved parents' ability to advocate for services for their transition-aged youth with autism. One hundred and eighty-five parents of youth with autism ages 16-26, recruited across three states in the U.S., were randomized to one of two experimental conditions. The treatment condition received the ASSIST program, a 12-week (24-h) group-based intervention. The control condition received the same written materials as the treatment condition. Primary outcomes for this report-parent advocacy ability-were collected at baseline (prior to randomization) and post-test (immediately after the treatment group finished the 12-week program) by survey. After taking ASSIST, the treatment condition had greater gains than controls in knowledge of adult services (B = -1.62, CI = -2.33 to -0.90) and perceived advocacy skills (B = -0.19, CI = -0.33 to -0.04). Participants who had less knowledge, lower perceived advocacy skills, and less active coping styles at baseline had the greatest treatment gains. Findings suggest that ASSIST is effective in improving parent advocacy ability and may be most beneficial for parents who experience greater challenges advocating for their son/daughter with autism. Future research will examine whether gains in parent advocacy ability leads to improvements in service access and post-school outcomes for transition-age youth with autism.
Child-onset mental health disorders can have a profound impact on the family, and particularly caregivers, particularly if they lack the needed support and information to manage their child’s treatment needs. The parent peer movement in children’s mental health directly responds to this gap in support of caregivers: Parent peers, who are caregivers of children with mental health difficulties who have experience navigating child serving systems, typically provide information about mental health and treatment, foster linkages to services, and offer emotional support to similarly situated caregivers. This chapter provides an overview of parent peer support, including the roles and qualifications of parent peers in the child mental health system, theoretical models that guide parent peer support programs, existing research, and concludes with the needed future directions.
Relying on non-hierarchical, often reciprocal relationships, peer support for chronic medical conditions can be defined by its five key functions: (1) being there, (2) assistance in daily management, (3) social and emotional support to promote disease self-management and coping with negative emotions, (4) linkage to clinical care and community resources, and (5) ongoing support because chronic disease is for the rest of one’s life. Relying on multi-level inputs and producing multi-level outcomes, peer support fits within a socioecological framework. It has been shown to be effective across a wide variety of health problems, health behaviors, and populations and can be implemented in a range of strategies and settings. Peer support has the ability to engage people too often hardly reached by organized health-care services and to extend the reach of traditional clinical services. The inclusion of peer supporters in health-care teams promotes implementation of and adherence to the Chronic Care Model.
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Changing global trends have made people more aware and conscious about their health and attainment of quality life by accessing healthcare services. But countries like Pakistan are not able to maintain quality healthcare services for common people. The healthcare service providers are not able to face challenges in this regard. The system of healthcare in Pakistan faces many issues and challenges of imbalance and insufficiency regarding deliverance and access to effective and quality healthcare services. The governments should develop an appropriate health system whose mechanism can be easily accessible for people especially women. For this purpose data from public hospitals has been collected to analyze specific issues within the boundaries of a specific environment and situation, because proper and accurate data availability can assure the effective policy making mechanism. In this study data has been collected by semi-structured interview schedule. Three public hospitals (Civil, Jinnah and Abbasi Shaheed) were selected as a universe of the study, and the respondents were purposively selected for conducting interviews in detail. The findings of this study reveal that in developing countries like Pakistan the healthcare services are not provided adequately in the public sector. People do not have easy access to healthcare opportunities for many reasons among which one reason is poverty, which leads to ill health and low health status. This growing dissatisfaction leads to imbalance societal gap, which demands appropriate measures and policies by the government. Government hospitals have some women specific wards but public private partnership has not been very effective, despite the establishment of Act and collaborations in public-private domain.
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We systematically reviewed research on interventions designed to increase service access for children with special healthcare needs through family empowerment, defined as caregiver’s knowledge, attitudes, and behaviors to meet their family’s needs. The purpose was to describe these interventions, evaluate the evidence, and understand their relevance for increasing service access for children with autism spectrum disorder. Identified studies (n = 25) showed consistent improvements in knowledge and attitudes, limited assessment of behavior, and mixed outcomes for service access, suggesting a need for greater understanding of how to empower families to meet their service needs. Future research should aim to integrate theory across development, application, and evaluation of interventions, while considering alternative approaches that put more responsibility and burden on systems of care.
Early engagement in mental health intervention is critical, yet the vast majority of children who are experiencing mental health concerns are not receiving needed services. Pediatric primary care clinics have been recognized as an ideal setting in which to identify and address mental health problems early, although engagement in mental health services within primary care and in community-based settings remains low. Navigators, or individuals with experience in navigating the mental health system, have been highlighted as promising partners in efforts to improve engagement in mental health services. Navigation has a growing body of research support among adults and in targeting medical concerns, but there has been limited research on integrating family navigators into pediatric primary care settings to address mental health concerns. Despite this gap in the evidence base, we believe there is significant promise for the use of this model in addressing children’s mental health needs. In this report, we discuss factors contributing to high levels of unmet mental health needs and low levels of engagement in mental health services, the role that navigators can play in increasing engagement in mental health care, and implications and recommendations related to integrating mental health–focused family navigators into pediatric primary care settings.
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The Family Empowerment Scale (FES), a 34-item rating scale, was developed to measure empowerment in families with children who have emotional, behavioral, or mental disorders. This study investigated the psychometric characteristics of the FES in a sample of 228 families whose children had serious emotional disturbance or attention-deficit/hyperactivity disorder. The families rated each item on a 5-point Likert-type rating scale, and the ratings were subjected to a number of psychometric analyses. The results of factor analyses, with varimax rotation, provided a conceptually meaningful four-factor solution. Congruence between the four factors derived in this study and the corresponding factors in the original FES psychometric analysis was high, with congruence coefficients ranging between .88 and .98. Obtained internal consistency estimates of reliability ranged from .78 to .89 for the four subscales, and the split-half estimate of reliability for the FES was .93. The results indicate that the FES has robust psychometric properties and may be useful in assessing the empowerment status of families whose children are handicapped.
In spite of a relative lack of evidence attesting to the efficacy of paraprofessionals in enhancing student outcomes, there has been a phenomenal growth in utilization of paraprofessionals in special education service delivery roles. A literature review indicated a need for additional information on this issue. Over the years the role of paraprofessionals has expanded to include increased use of these personnel for formal assessment, initial instruction, and home-school support, in addition to other activities that have, historically, been performed by teachers. This article includes a review of the efficacy literature, professional educators' attitudes toward use of paraprofessionals, and information available on training models for paraprofessionals, and serves as a foundation for future research on the utilization of paraprofessionals in special education programs.
In spite of the high dropout rate from child and family therapy, few studies have investigated the premature termination of treatment of children. We argue that, due to decision-making and motivational differences of children and adults in psychotherapy, different variables would relate to treatment continuance for the two groups. We investigated the relationship of demographic, therapist, and treatment variables to premature termination for both children (n = 212) and adults (n = 118) in outpatient therapy. Multiple-regression analysis revealed that therapist experience and referral source predicted adult continuance, but none of the variables investigated related to child treatment continuance. We conclude that data from children and adults should be analyzed separately in dropout research, that more research should be devoted to the study of the continuance of children in treatment, and that parent variables influencing continuance of their children's treatment should be identified.