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Parent Advisory Groups in Pediatric Practices
Parents' and Professionals' Perceptions
Martin H. Young, PhD;
Jannette M. McMenamy, PhD;
Ellen C. Perrin, MD
Arch Pediatr Adolesc Med. 2001;155:692-698.
ABSTRACT
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Objective To describe the benefits perceived by parents and professionals from
their participation in parent advisory groups (PAGs).
Design Retrospective telephone survey.
Setting Parent advisory groups were established in 4 community-based pediatric
practices. Each group included parents of children with chronic health conditions,
health care providers, and a Department of Public Health staff member.
Participants The mothers and fathers of children with chronic health conditions completed
a telephone survey. These parents also were enrolled in a broader intervention
aimed at providing primary care for children with chronic conditions.
Intervention Groups met regularly in the pediatric office setting. Logistical arrangements
and activities varied among the 4 groups.
Main Outcome Measures Parents and professionals rated their perceptions of the PAGs based
on a structured list of potential benefits.
Results Mothers viewed the PAGs as most beneficial in diminishing their isolation,
helping them to understand family concerns, increasing their influence on
the pediatric care provided to their children, and improving their knowledge
of community resources. Professionals believed that the PAGs enhanced their
awareness of common family needs, increased their skills at collaborating
with families, and helped them to feel more effective. All professionals and
most parents were interested in continuing their involvement in a PAG.
Conclusions Parent advisory groups may benefit families and professionals who care
for them by (1) fostering collaborative relationships and communication, (2)
increasing a sense of social support among families, (3) increasing families'
knowledge of community-based resources, and (4) increasing the families' sense
of efficacy and involvement in the care of their own and others' children.
INTRODUCTION
ABOUT 6% to 18% of children in the United States have a chronic health
condition.1, 2, 3, 4
They and their families experience many needs beyond health care requirements
for the child's condition. These needs include gathering adequate information
about the child's condition(s), treatment, and prognosis; making contacts
with similar families; counseling; child care; and advice about insurance
and legal matters.5, 6, 7, 8, 9, 10, 11
Many of these needs are experienced independent of a child's particular diagnosis,
while others are dependent, at least in part, on the nature and severity of
a child's condition(s).12 Other factors are
also relevant, including the child's age, the parents' socioeconomic circumstances,
and the services available to the child.13
Numerous groups that provide support and information to parents have
been established to meet the varying needs of families of children with chronic
health conditions. Parent groups differ along a number of dimensions, including
their leadership, location, and goals, as well as the population they include.14, 15, 16, 17 For
example, some groups are specific to diagnostic categories while others are
noncategorical or generic, and some are located in medical centers while others
are community based. Regardless of the structure of the groups, their success
seems to depend on "perceived sameness" among parents—the idea that
families share similar daily experiences.14
The present article describes a group for parents of children with chronic
health conditions that differed from previous interventions in 3 ways. First,
these parent advisory groups (PAGs) were located within the context of 4 community-based
pediatric offices. Second, the families involved in the groups represented
an extremely wide range of diagnoses. These PAGs were based on the notion
that parents have a lot to offer and to teach each other independent of their
children's particular condition and health status. Third, health care professionals
and representatives from the regional Department of Public Health (DPH), Division
of Children with Special Health Care Needs (Title V), were involved in the
groups.
Although substantial anecdotal evidence suggests that support groups
play an important role in helping families of children with chronic conditions,
few systematic studies have been conducted to confirm this claim.14, 18, 19 The investigation
described herein assesses the perceived impact of this program on all 3 categories
of participants: parents, pediatricians, and staff members from the regional
DPH.
PARTICIPANTS AND METHODS
DESCRIPTION OF THE GAPS PROJECT
Parent advisory groups were part of a larger project that aimed to improve
the coordination of care for children with chronic conditions in the context
of community primary care settings. This program was entitled GAPS (Guiding
Appropriate Pediatric Services for Children With Special Health Care Needs
and Their Families). The GAPS program consisted of several parts. Central
to the intervention were the 2 following requirements: (1) pediatricians and
parents completed needs assessment questionnaires that described the child's
and the family's condition, including their health needs and psychosocial
concerns, and (2) parents subsequently participated in a planning meeting
with their primary care physician (and nurse practitioner, if involved) to
address the child's and family's short- and long-term health needs and care.
In addition, a PAG was initiated in each of 4 participating community-based
pediatric practices: 1 in a staff-model health maintenance organization, 1
in a small pediatric group, and 2 in multispecialty group practices. All of
the families enrolled in the GAPS project were invited but not required to
participate in PAGs.
The participants in the GAPS project were 90 families of children with
chronic health conditions. These families were recruited by the project coordinator
from a list of 197 children identified by their pediatricians as having a
chronic health condition. The pediatricians identified families who had a
child with a chronic health condition using billing records from the previous
2 years and a broad range of International Classification
of Diseases, Ninth Revision diagnostic codes. A chronic health condition was operationally defined as a condition that
had lasted or was expected to last 1 year or more and that could be expected
to require more than the usual amount of medical supervision. Because of the
diverse epidemiology of chronic health conditions in children,2, 3, 20, 21
the project was inclusive of children with a large variety of conditions.
The children enrolled in the GAPS project ranged in age from 2 months
to 15 years, and 48% were female. Diagnostic information for the 90 children
is as follows: 16 children had multiple conditions, 28 were identified as
having a primary respiratory condition, 27 had a primary neurologic condition,
and 19 had a variety of other conditions (eg, cardiac, renal, or orthopedic
conditions). The range of diagnoses reported by participants is as follows:
arthritis, asthma, attention deficit/hyperactivity disorder, autism, blindness,
bronchopulmonary dysplasia, cerebral palsy, chronic otitis media, cleft lip/palate,
complex syndromes (includes Down, Kallmann, DiGeorge), congential heart disease,
cystic fibrosis, deafness, diabetes, hypothyroidism, learning disabilities,
leukemia, mental retardation/developmental delays, orthopedic abnormalities
(including arthrogryposis, scoliosis, osteogenesis imperfecta), neurofibromatosis,
neuropsychiatric conditions, nephrotic syndrome, seizure disorders, and systemic
lupus erythematosus. Socioeconomic status was estimated using parental education
and insurance information; the socioeconomic status of the majority of families
was primarily middle class (79%). Participants in the GAPS project did not
differ from nonparticipants in the sex or age of the children or the constellation
of their children's diagnoses. Further information about the nonparticipating
children is not available.
DESCRIPTION OF THE PAGs
A single primary purpose of the PAGs was stated at the outset. These
groups were to bring together parents of children with various chronic conditions,
their primary care providers, and a staff member from the regional DPH to
explore how they might together improve communication, provide mutual support,
and create innovations in the provision of care in the practice. No guidelines
were established as to the number of parents to be included, the frequency
of their meetings, or their agendas. We anticipated that each group would
develop differently.
As they developed, each PAG consisted of 4 to 15 mothers of children
with chronic conditions, 1 to 4 of their health care providers, and 1 DPH
staff member. Providers and DPH staff were active participants in all group
meetings; they did not receive additional training in this area nor were they
compensated for their participation. Outside guests and presenters participated
at the request of regular group members.
Groups met biweekly, monthly, or bimonthly in the practice setting and
their activities were varied. The products of these meetings were the results
of collaborative efforts among parents, providers, and DPH staff. One group
published a local directory of educational and recreational resources for
children with chronic conditions. Another worked with local agencies, including
the school system, to improve community awareness of and commitment to the
special needs of children with chronic conditions. Several groups organized
workshops for parents in the community about special education services, the
impact of chronic health conditions on siblings, peer relationships, and interventions
to address teasing and bullying by classmates. The PAGs also served as a general
forum for families of children with chronic conditions to discuss their common
needs and concerns and to identify ways to help the practice learn what is
important to families of children with chronic conditions.
INTERVIEW PROCEDURES
The information obtained for this article was collected by 1 interviewer
using a semistructured telephone interview. He attempted to contact all 90
families who had participated in the GAPS project, whether or not they had
chosen to be involved in a PAG. He asked both mothers and fathers to participate
in the interviews. They were interviewed in succession during the same telephone
call or, if more convenient for the family or if the parents lived apart,
during separate calls. The interview was approximately 15 to 20 minutes for
each parent. All participants were informed that their responses were confidential
and that their pediatricians would not have access to their completed interviews.
Past research has provided evidence that telephone interviews are a
successful method for obtaining responses regarding the experiences of parents
of children with special needs,14 and generate
information comparable to that obtained by other methods of data collection,
eg, in-person interviews.22 When it was impossible
to interview a parent by telephone, a written questionnaire was mailed to
the parent for completion. Six parents completed the questionnaire by mail.
All of the physicians, the nurse practitioner, and the DPH staff members participating
in the study completed a written version of the questionnaire.
The interview began with an assessment of the parent's awareness of
the PAG in the pediatric practice. If parents acknowledged that they knew
about the PAG, they were asked to describe their level of involvement in it
on a 10-point Likert scale with 1 representing no involvement and 10 representing
high involvement. If the involvement score was 2 or above, they were asked
to respond to a series of questions about their experience with the PAG. These
questions, all on a Likert scale ranging from 1 (not at all) to 10 (very much),
addressed issues such as how the PAG may have affected the parents' involvement
in their child(ren)'s health care, their contacts with and understanding of
other parents of children with chronic conditions, and their desire to remain
involved in a PAG. These potential benefits are listed in Table 1. Parents also responded to open-ended questions about the
positive and negative aspects of their participation in the PAG.
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Table 1. Mothers' Ratings of Potential Benefits of Parent Advisory
Groups*
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The questionnaire provided to physicians and DPH staff members paralleled
the parents' protocol. It was modified to include relevant questions about
how involvement in a PAG may have affected these professionals' abilities
to meet the needs of children with chronic conditions and whether the groups
changed their work practices. Potential benefits are listed in Table 2.
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Table 2. Professionals' Ratings of Potential Benefits of Parent Advisory
Groups*
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RESULTS
DESCRIPTION OF SAMPLE
Of the 90 families enrolled in the GAPS project, either one or both
parents of 78 children responded to the telephone interview—a participation
rate of 87%. Of the 78 children, information was obtained from both mothers
and fathers for 40 children, from mothers for 35, and from fathers for 3.
The primary reason for nonparticipation was an inability to contact the family
(eg, moved from area, disconnected telephone, transferred pediatric practices
without forwarding information). Participants did not differ from nonparticipants
in diagnosis, age, sex, or socioeconomic status. The 6 pediatricians and 1
nurse practitioner involved in the project completed the written questionnaire,
as did the 5 members of the DPH staff.
AWARENESS-INVOLVEMENT IN A PAG
Parents
We defined minimal involvement as a score of
2 to 4; moderate involvement, score of 5 to 7; and high involvement, score of 8 to 10 on the 10-point Likert
scale. Forty-seven (61%) of the 75 mothers who responded to the questionnaire
were aware of the existence of a PAG in their pediatrician's office. Of the
mothers who were aware of the groups, 9 (19%) reported minimal involvement
in the groups and 19 (40%) reported moderate or high involvement.
Of the 43 fathers, 19 (44%) were aware of the existence of PAGs, with
only 1 of these 19 fathers reporting at least moderate involvement and 18
reporting no or minimal involvement. Differences between proportions t tests confirmed that far fewer fathers who completed
the questionnaire were aware of (t = 2.44, P<.04) and were at least moderately involved in (t = 2.92, P<.01) PAGs than
were mothers. Due to the low level of involvement of fathers in these groups,
we have excluded fathers from the analyses.
Professionals
All the medical professionals and DPH staff who completed the questionnaire
were aware of the existence of PAGs. The reported level of involvement for
these individuals ranged from a score of 2 to a score of 10, with a mean level
of involvement of 6.8 (moderate). Because of the small sample size of medical
professionals and DPH staff, only descriptive data are reported on these groups.
PERCEIVED BENEFITS OF PAGs
Mothers
The respondents were the 28 mothers who reported at least minimal involvement
(score  2) in a PAG. For each of the 7 questions, response options ranged
from 1 (no benefit) to 10 (highly beneficial). We categorized these scores
into the following 3 levels of benefit: "minimally beneficial" (a score of
1-3), "moderately beneficial" (a score of 4-7), and "highly beneficial" (a
score of 8-10).
Table 1 summarizes mothers'
responses to each question. Overall, mothers viewed PAGs as at least moderately
beneficial in all areas. More than half of the mothers viewed the PAG as having
been highly beneficial in 3 areas. Sixty-four percent (18 of 28) claimed that
the PAG had helped them to feel less isolated, and 16 (57%) of 28 mothers
believed the PAG helped them to understand the concerns of other families
that have children with chronic conditions. Fifty-four percent of mothers
(15 of 28) reported that the PAG had helped them to influence how children
with chronic conditions and their families were cared for at their pediatrician's
office. In addition, a substantial number of mothers (46%) stated that the
PAG had helped them to get to know the resources available in the community
for their children. Seventy-two percent of mothers were at least moderately
interested in continuing to be involved in the groups (mean [SD], 5.36 [3.23]).
Professionals
Table 2 summarizes the responses
of physicians and DPH staff. Physicians viewed PAGs as most successful in
making them aware of the common needs of families of children with chronic
conditions, in helping them to find ways to be more collaborative with these
children and their families, and in helping them to feel more effective in
caring for them. In contrast, physicians perceived PAGs as being less effective
in increasing their use of services from DPH and in revising the ways they
and their office staff care for children with chronic conditions. The staff
from DPH viewed PAGs as highly successful in all 6 areas presented to them,
with "finding ways to be more collaborative with children with chronic conditions
and their families" being rated the highest. Ten of the 11 professionals stated
that they were moderately to highly interested in continuing involvement in
a PAG (mean [SD], 1.9 [2.54]).
QUALITATIVE RESPONSES
Mothers
In addition to rating these structured questions, mothers were asked
to provide their ideas about the most positive and negative aspects of their
experiences with the PAG. The 28 mothers who were involved in these groups
provided 82 comments regarding the positive aspects of the PAG. Two themes
were prevalent in these responses: (1) 47% of mothers' responses (38 of 82)
focused on the benefits of having a PAG as a place for support and the sharing
of experiences, ideas, and frustrations. A number of mothers claimed that
"it's nice to know that you are not the only one out there" or that "it's
good to know that other parents have similar problems." One mother said that
it was a great place to "talk to other parents in the same situation . . .
dealing with the everyday stresses of chronic illnesses," while yet another
stated, "it's a really great place to vent." (2) Twenty-seven percent of mothers'
comments (22 of 82) pointed to the success of the PAG in increasing families'
access to previously unknown resources and to new information from other parents,
physicians, and guest speakers or programs. For example, 1 mother stated,
"the programs offered through the PAG were invaluable," while another claimed
that "the greatest benefit of PAGs was the pooling of resources from a variety
of individuals." Another mother claimed that the best thing about the PAG
was that it allowed her to interact with "parents who had a tremendous amount
of experience with getting resources."
Six mothers commented about the PAG as a mechanism by which parents
became "closer to their pediatrician" and were able "to actually affect change
in the care" of their children. A number of mothers claimed that one of the
greatest benefits of a PAG was the ability to help other families that had
a child with a chronic illness. Other benefits reported by mothers included
making friends; learning to deal with professionals at their level; having
a night out; getting projects done; having a small, local, and informal group
to attend; and learning how different children react to their situations.
Fifteen of the 28 mothers who were involved in the groups could not
think of any negative aspects of PAGs. The remaining mothers provided 22 comments,
reflecting 2 prevalent themes: (1) 45% (10/22) of mothers' comments focused
on organizational or scheduling issues. Five mothers claimed that finding
a time to meet was extremely difficult due to baby-sitting issues and the
busy status of their lives. One mother stated that "the facilitator needs
to be trained more extensively" while another said "it would be nice to have
more guest speakers on a regular basis." (2) Thirty-one percent (7/22) of
comments focused on the relatively small effect a practice-based group could
be expected to have in meeting the needs of families with children with chronic
conditions. For example, one mother stated "the expectations of parents about
what a PAG should be doing were far greater than what the groups could actually
do," while another claimed that "it was difficult to address some problems
because the overall health care system leaves a small PAG helpless."
Three mothers commented about the difficulty of addressing the diverse
needs of families. Specifically, they stated "some families ended up monopolizing
all of the group's time because they had so many needs," "there were a lot
of needs but the groups tended to cover only a few," and "the expectations
and needs of families were so different." Other negative comments included
that "the groups often became a place to complain rather than to move forward"
and that mothers "wished the groups were better advertised so that more people
had known about them."
Professionals
The 6 physicians and 1 nurse practitioner provided 18 comments about
the positive aspects of being involved in a PAG. Nine of these comments focused
on the influences of these groups on their medical practices and 6 referred
to increased family participation and receiving feedback from families about
their care. Other responses expressed appreciation for the programs being
conducted in the groups and the development of a resource book, the opportunity
to increase involvement with parents, and the chance to gain a better understanding
of parents' needs.
The 15 responses made by the 5 DPH staff members reported the benefits
of PAGs to include greater access to resources for families,4
cross-family support,5 heightening their own
awareness of the situations of families,2 enhancing
the relationships between families and providers,2
and enhancing the relationships between DPH and pediatric practices.2
Scheduling and attendance issues were the most consistent negative aspects
of the groups for both the physicians and DPH staff members. They claimed
that maintaining interest and motivation among parents was also a problem.
They also were concerned about the groups' ability to identify and carry out
realistic projects. Other problems included unclear goals within the groups,
funding issues, the ability of a PAG to meet everyone's needs, and staffing
issues.
COMMENT
We have obtained systematic reports from parents, physicians, and DPH
staff members regarding their experience with practice-based PAGs. These PAGs
appear to have met their primary goal of providing 2-way communication between
the professional staff at primary care physician offices and mothers of children
with chronic health conditions. They appear also to have created a supportive
environment for these families. The findings also highlight some of the challenges
in establishing and maintaining effective groups that meet these families'
needs.
PARENTS
The majority of mothers who participated in this survey were aware of
the PAG in their pediatrician's practice, and most of those reported at least
minimal involvement. Fewer fathers than mothers were aware of and involved
in PAGs. The fathers' lack of involvement in the groups is regrettable, but
consistent with past research. Mothers report a larger number of unmet health
care needs than do fathers,5, 23
and a greater desire for social contacts for themselves and their children
with other families that include a child with a chronic health condition.11 Mothers may have been more motivated to become involved
in the PAGs because they perceived their families as having more needs and
because PAGs provided opportunities for social interaction.
Numerous investigators have reported that families of children with
chronic conditions would like to have more information and better support
at the familial, social, and professional levels.6, 9, 10, 24, 25, 26
Mothers in this study viewed PAGs as successful in addressing these needs,
especially in understanding other families' concerns, decreasing their isolation,
and getting to know about community resources. Parent advisory groups were
reported to provide a supportive arena for the sharing of experiences and
increasing access to information about previously unfamiliar resources and
knowledge. The majority of mothers who participated in these groups were moderately
to highly interested in continuing.
These findings are particularly striking in the context of the diversity
of children's diagnoses. Because these PAGs were intended to provide a support
network within the context of a primary care pediatric practice, the children
had conditions ranging from chronic ear infections to rare neurologic conditions.
The sense of connectedness experienced by the parents and their perception
that PAGs gave them important and usable information and strategies provides
evidence that support services can be provided successfully to families living
with a wide range of chronic health conditions.
Another benefit of the PAGs was the empowerment experienced by many
mothers. More than half of the mothers involved in this study claimed that
PAGs had helped them to influence care at their physicians' offices. Several
mothers stated also that one of the most beneficial aspects of the PAGs was
the ability to help other families. Many mothers appear to be motivated to
have an impact on the well-being of children with chronic health conditions
(in addition to their own child). Such activities may provide mothers with
a gratifying sense of control and success in a context that may often seem
frustrating and beyond their command. On the other hand, many mothers expressed
doubts about the ability of PAGs to be able to make necessary changes within
the larger health care system.
PROFESSIONALS
Both the pediatricians and the DPH staff perceived PAGs as beneficial,
especially in heightening their awareness of the needs of families with children
with chronic conditions and increasing their collaboration with these families.
These findings are important in light of research suggesting that physicians
recognize fewer unmet needs than do parents of children with chronic conditions.5, 11, 27, 28 Involvement
of physicians in parent groups may improve their understanding of the nature
and types of needs perceived by parents and thus increase collaboration between
families and their pediatricians. All professionals were interested in continuing
their involvement in PAGs.
Although mothers believed that PAGs increased their influence on their
child's care, physicians were less convinced that "PAGs changed the way I
care for children with chronic health conditions and their families" or that
"PAGs revised how my office staff cares for children with chronic health conditions."
This discrepancy between mothers' and physicians' perspectives may be due
to the fact that for pediatricians PAGs were more helpful in other areas (eg,
getting to know families' needs) than in direct-care decisions. It is possible
also that parents noticed subtle changes in their interactions with pediatricians,
particularly regarding communication about issues of more relevance to them,
that were not readily visible to the physicians (eg, an additional question
about their need for social support). Families also may have noticed changes
in physicians' practices and misattributed them to the PAGs.
COMMON DIFFICULTIES
Pragmatic issues must be taken into consideration when developing interventions
for families of children with chronic health conditions. In their anecdotal
reports, mothers acknowledged the difficulties associated with attending and
facilitating a group for these families. Their comments focused on scheduling
issues and a desire to have more speakers and organized programs. Adequate
child care is one of the most commonly reported needs among families of children
with chronic conditions, making it difficult for mothers and fathers to plan
and attend simultaneously any regular meetings or programs. Time constraints
and child-care issues must be considered in the development of any successful
intervention for these families. The majority of criticisms by professionals
of PAGs focused on scheduling and attendance issues as well as on maintaining
interest and motivation.
One creative way of maximizing connections between families and physicians
while minimizing time commitments might be less frequent meetings associated
with an online discussion group. Future groups could do better advertising
on a continuous basis to ensure that all eligible families are aware of the
groups and maximize their involvement. Parents' suggestions included mailings
to be sent out by the practice (eg, with bills), posters in the waiting room,
and a systematic "telephone tree" system. Development of similar groups should
continue to strive to find a way to include fathers.
CONCLUSIONS
There are several limitations to this study, mainly the absence of a
preintervention assessment and an appropriate comparison group. These omissions
preclude a direct evaluation of the impact of PAGs. The voluntary participation
of particular self-selected mothers and the lack of participation of fathers
limit the generalizability of our findings. It is possible, even likely, that
mothers who are most involved in and knowledgeable about their children's
health care are those who become involved in groups such as PAGs. Thus, the
self-selection of mothers to the groups makes it impossible to clarify the
potential role(s) the PAG itself may have played in involving and empowering
families. In addition, the small number of physicians and DPH staff allowed
us to provide only limited descriptive data about these groups.
Nonetheless, the present study contributes some initial data about the
benefits of practice-based PAGs to a literature that has few empirical outcome
studies. Our findings support some of the basic principles of family-centered
care. They also suggest that PAGs may benefit both families of children with
chronic health conditions and the professionals who care for them by (1) fostering
collaborative relationships and communication, (2) increasing a sense of social
support among families, (3) increasing families' knowledge of community-based
resources, and (4) increasing families' sense of efficacy and involvement
in the care of their own and others' children with chronic health conditions.
AUTHOR INFORMATION
Accepted for publication December 7, 2000.
This project was funded by the W. T. Grant and J. B. Cox Foundations,
the Joseph P. Healy Grant, and grant MCJ-257057 from the Maternal and Child
Health Bureau.
We thank Janet Stanton, Eileen MacInnis, and Drew Cutney for gathering
data; William O'Connell, Regional Director of the Massachusetts Department
of Public Health, Division of Children with Special Health Care Needs, for
collaboration with the pediatricians; Richard Antonelli, MD, Betty Madden,
PNP, David Tapscott, MD, Scott Wellman, MD, Kathleen Cleary, MD, Ingrid Cruse,
MD, Martin Feldman, MD, Terry Gingris-Callahan, MD, David Keller, MD, Jeffrey
Lukas, MD, Julie Meyers, MD, and Lisa Mooney, MD, for their consistent work
to make the GAPS project a reality; and all the children and their parents,
from whom we learned so much.
From the Department of Pediatrics, UMass, Memorial Medical Center,
Worcester, Mass.
Corresponding author: Martin H. Young, PhD, UMass Memorial Medical
Center, Department of Pediatrics, 55 Lake Ave N, Worcester, MA 01655.
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