Scandinavian Journal of Occupational Therapy

ISSN: 1103-8128 (Print) 1651-2014 (Online) Journal homepage: http://www.tandfonline.com/loi/iocc20

Community-based participatory research

to promote healthy lifestyles among Latino
immigrant families with youth with disabilities

Yolanda Suarez-Balcazar, Amy Early, Ashley Maldonado, Claudia P. Garcia,

Dalmina Arias, Amalia Zeidman & Alexander Agudelo-Orozco

To cite this article: Yolanda Suarez-Balcazar, Amy Early, Ashley Maldonado, Claudia P.
Garcia, Dalmina Arias, Amalia Zeidman & Alexander Agudelo-Orozco (2018): Community-based
participatory research to promote healthy lifestyles among Latino immigrant families with youth with
disabilities, Scandinavian Journal of Occupational Therapy, DOI: 10.1080/11038128.2018.1502348

To link to this article: https://doi.org/10.1080/11038128.2018.1502348

Published online: 03 Oct 2018.

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SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY
https://doi.org/10.1080/11038128.2018.1502348

ORIGINAL ARTICLE

Community-based participatory research to promote healthy lifestyles

among Latino immigrant families with youth with disabilities
Yolanda Suarez-Balcazar, Amy Early, Ashley Maldonado, Claudia P. Garcia, Dalmina Arias,
Amalia Zeidman and Alexander Agudelo-Orozco
Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, USA

ABSTRACT ARTICLE HISTORY

Background/Aims: Community-based participatory research (CBPR) is an optimal approach that Received 30 November 2017
brings together community stakeholders, researchers and practitioners in an effort to understand Revised 8 February 2018
and address social issues and health disparities experienced by vulnerable populations. Latino immi- Accepted 13 March 2018
grant families in the United States with youth and young families with disabilities have experienced
KEYWORDS
a number of barriers in gaining positive health outcomes. These families face challenges in maintain- Participatory research;
ing a healthy lifestyle, placing them at high risk for obesity, diabetes, and other chronic health condi- Latino; health
tions. The purpose of this study was to develop a healthy lifestyles intervention in collaboration with disparities; disability
Latino immigrant families with youth and young adults with disabilities using a CBPR approach, and
to examine the impact of the intervention from participants’ perspectives.
Methods: Grounded in the principles of CBPR, we developed a partnership with community
stakeholders to create a healthy lifestyles intervention aimed at meeting the needs of Latino
families in the United States. During and following implementation of the intervention, we con-
ducted focus groups with 12 intervention participants to examine the impact of the intervention.
Results: Participants identified the intervention program as meeting a need in the community
and reported specific positive aspects related to health behaviors, social learning, inclusion, com-
munity participation, and peer advocacy.
Discussion: CBPR healthy lifestyle interventions are relevant to the needs of Latino immigrant
families with youth and young adults with disabilities. Health professionals should involve
community residents in the design of healthy lifestyles programming to ensure strategies for
change are relevant and relatable.

Introduction nondisabled peers or those with disabilities from other

Community-based participatory research (CBPR) is an
approach that brings together community stakeholders,
researchers and practitioners in an effort to understand
and address social issues that matter to the community
[1]. CBPR has also been proposed as the optimal
approach to address health disparities experienced by
marginalized communities. Latino immigrant families
in the United States with youth with disabilities is one
such group that has experienced a number of gaps in
health outcomes [2]. Specifically, these families face
numerous barriers to maintaining a healthy lifestyle,
placing them at high risk for obesity, diabetes, and other
chronic health conditions [2]. Strong evidence suggests
obesity rates are higher among Latino youth with dis-
abilities and their families when compared to their
ethnic/racial backgrounds [3]. Latino families with
youth and young adults with disabilities lack culturally
relevant and family oriented healthy lifestyles program-
ming. Immigrant families with members with disabil-
ities are more likely to experience occupational
deprivation as there are few accessible opportunities for
a healthy and engaging life [4]. Furthermore, they often
live in communities that lack health services, public
transportation, affordable and inclusive recreational
programs, and community social services [2,5].
Interest in addressing health disparities among
marginalized groups is on the rise among health pro-
fessions including occupational therapy. The purpose
of this paper is two-fold: (1) To describe a commu-
nity-based participatory approach utilized to develop

CONTACT Yolanda Suarez-Balcazar ysuarez@uic.edu Department of Occupational Therapy, College of Applied Health Sciences, University of
Illinois at Chicago, Chicago, IL 60612
Present address: Professor, Universidad Del Valle, Cali, Colombia.
ß 2018 Informa UK Limited, trading as Taylor & Francis Group
2 Y. SUAREZ-BALCAZAR ET AL.
a healthy lifestyles intervention in collaboration with
Latino families with youth and young adults with dis-
abilities; and (2) to discuss findings from a qualitative
study examining the impact of the intervention.
Implications for health professionals are discussed. In
the context of this study, healthy lifestyles refer to
opportunities that vulnerable populations have to par-
ticipate actively in physical and recreational activities,
consume healthy products, and engage in fun activ-
ities with their family members and/or community.
Latino immigrant families with youth and
young adults with disabilities in the
United States
Latinos are the fastest growing minority group in the
United States and the group with the highest number of
immigrants coming to the United States. As the number
of immigrants from Latino backgrounds increases, the
population of Latinos with disabilities also increases [6].
Latino families with youth and young adults with disabil-
ities face many challenges when migrating to the United
States including attitudinal and environmental barriers
that place them at a higher risk for emotional stress and
occupational deprivation [4], as well as other conditions
including obesity and chronic health conditions [3].
Health disparities experienced by Latino families with
youth with disabilities are a growing concern. Moreover,
the large body of literature on health disparities has indi-
cated that Latino youth are at even higher risk to be
obese—38% higher—than White and Asian youth with
and without disabilities [7]. Health disparities refer to
gaps in health outcomes due, in particular, to race, ethni-
city, disability, socio-economic status or other demo-
graphic characteristic.
One of the barriers Latino families with youth and
young adults with disabilities have identified to main-
taining a healthy lifestyle and active engagement in
their communities is a lack of health and wellness
programs available to the whole family that are con-
sistent with Latino values [8,9]. Moreover, environ-
mental barriers contribute to the unhealthy lifestyles
that fuel obesity in vulnerable populations. For
instance, Latino families with youth and young adults
with disabilities are more likely to live in working-
class communities that lack access to accessible play-
grounds and parks and are saturated with fast-food
outlets and convenience stores, in which affordable
healthy alternatives are scarce [10,11]. Furthermore,
occupational therapists have documented the negative
impact of obesity and lack of physical activity on a
person’s occupational performance and ability to per-
form activities of daily life [10,12].
Literature on accessible and culturally appropriate
health and wellness programs for Latino families with
youth and young adults with disabilities is sparse,
particularly interventions that have been designed
with the active participation of families in order to
meet their needs [5]. Some evidence-based interven-
tions are available, focusing on promoting healthy
lifestyles among youth with disabilities and among
adults with developmental disabilities [13,14].
Effective interventions have incorporated physical
activity, nutrition education, and behavior manage-
ment techniques [15]. Family education has also been
effective in combating obesity among children with
neurodevelopmental disorders [16]. Occupational
therapists have made contributions to health promo-
tion by focusing on engagement in meaningful occu-
pations and client-focused interventions [17].
However, in order to embrace a CBPR approach and
sustain interventions at the community level, the
development and implementation of such interven-
tions need to include the voices of the community
and address cultural nuances and components that
matter to residents [5]. Many of the available inter-
ventions are introduced to vulnerable communities
without input from them, questioning the inter-
vention’s sustainability and cultural fit.
This research study illustrates the development and
implementation process of a participatory research
healthy lifestyles intervention called Healthy Families,
for Latino immigrant families with youth and young
adults with Intellectual and Developmental
Disabilities (IDD). We describe the phases of the par-
ticipatory approach undertaken to develop the inter-
vention in collaboration with the community, then we
present the results of a qualitative study designed to
examine its impact. We also discuss the process and
importance of incorporating participants’ voices into
the final intervention protocol and implications of
this approach to advance health professions including
scholarship in occupational therapy. This approach to
CBPR is also emancipatory as it is designed to pro-
duce knowledge in collaboration with the community,
which can benefit the community.
CBPR approach: Developing a healthy
lifestyles intervention in collaboration with
Latino families with youth and young adults
with disabilities
Grounded in the principles of community-based par-
ticipatory research [1] and emancipatory research
[18], this study was guided by the community of

interest’s active participation throughout the develop-
ment and advanced refinement of the intervention
phases. A strong reciprocal partnership with a com-
munity-based organization serving people with dis-
abilities and their families contributed to development
of the intervention. Collaborative relationships
between researchers and community members are the
core of CBPR through coming together to understand
and address issues of interest to the community [19].
These reciprocal partnerships are grounded in princi-
ples of trust, mutual benefit, respect for diversity and
the community’s culture, and most importantly,
respect for the voices of community residents [20].
Informed by frameworks of intervention research
in public health and community psychology [20,21],
the Scholarship of Practice Model in Occupational
Therapy [22], and the Practice Framework in
Occupational Therapy [23], the researchers engaged
the community in each of the following phases: (1)
Developing a community partnership to support par-
ticipatory research; (2) identifying and assessing needs
from the perspective of participants; (3) designing the
intervention; (4) early pilot-testing of the intervention;
(5) evaluating and further developing the interven-
tion; and (6) sustaining the evidence-based interven-
tion and utilizing findings. This study was approved
by the university’s Institutional Review Board before
its onset. Participants’ recruitment and consent to
participate followed IRB approved protocols.
Developing a community partnership to support
participatory research
CBPR falls within the context of community settings,
often through partnering with a community-based
organization (CBO). For this project, researchers part-
nered with an agency located in a predominately
Latino neighborhood in a large, dense, urban city in
the United States. The CBO actively pursues its mis-
sion of assisting individuals with IDD and their fami-
lies to become fully integrated and involved in their
communities by offering an array of programs to over
1,000 members of this population. The services this
organization offers include vocational evaluations,
employment services, community residential options,
family respite services, and brain injury case manage-
ment, among others. The researchers’ university of
affiliation has had a long history of partnering with
this CBO for education, research and practicum
placements of occupational therapy students. The
CBO provided access to the family participants and
assigned two agency staff to assist with the
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 3
development and implementation of the intervention,
as well as provide ongoing feedback.
The researchers also partnered with an advocacy
and education consumer group that provides support
to Latino families with youth and young adults with
IDD. Through these two organizations, 2 mothers,
both with two youth with IDD each, participated
actively in the development of the intervention, along
with the staff from the agency.
Identifying and assessing needs from the
perspective of participants
Engaging in conversations with community members
and the target population is central to CBPR and
emancipatory research. Thus, in order to determine
objectives of this project and draft a plan to meet
them, steps were taken to identify issues community
members faced related to sustaining and maintaining
healthy lifestyles. These steps included conducting: (1)
focus groups with parents and youth with IDD to
explore their needs; (2) interviews with community
stakeholders and agency personnel; and (3) a review
and synthesis of the literature.
Early focus groups with parents and youth with IDD
Researchers conducted two separate focus groups early
in the development of the intervention phase to hear
the voice of the community and identify their needs
and barriers in maintaining a healthy lifestyle. Four
youth with IDD who participated in the focus group
identified a number of barriers to engaging in healthy
lifestyles including: attitudinal barriers, lack of inclu-
sive, accessible programming that is available to them,
lack of community and school staff trained in recre-
ation and sports programs, lack of transportation, and
lack of affordable fresh products available in their com-
munities. A separate focus group with 12 parents (6
couples) was conducted in which parents echoed the
barriers youth had identified. Parents also mentioned
the lack of culturally and linguistically relevant and
inclusive healthy lifestyles programming available to
the whole family. For a detailed description of focus
group data see Suarez-Balcazar, et al. 2018 [8].
Interviews and conversations with community
stakeholders and agency personnel
Community partners identified obesity in the Latino
population and the lack of programming available to
them as a significant concern at several community
meetings. They also discussed the lack of resources
4 Y. SUAREZ-BALCAZAR ET AL.
and lack of inclusive programming available to the
whole family. Through these interviews, we learned
that the CBO was in the process of hiring an outreach
health coordinator to help identify programming to
serve the health needs of people with disabilities and
their families.
Review and synthesis of the literature
In a thorough review of the literature, researchers
identified several evidence-based programs to pro-
mote health and wellness among people with disabil-
ities, yet none were holistic interventions specifically
tailored to the multigenerational Latino Family with
youth and young adults with disabilities. Researchers
have previously highlighted the importance of cultur-
ally and linguistically relevant interventions in order
to maximize their effectiveness [5]. Culturally relevant
interventions reflect the values, behavioral preferences,
language preference and ways of doing and thinking
of the target population [5]. Examples of effective,
culturally relevant health programming components
from the literature that have been utilized with the
Latino population include incorporating dance as a
form of physical activity [24–26], implementing inter-
active and family-focused physical activities, and
ensuring that all intervention components and materi-
als are delivered in Spanish and reflect the literacy
level of the population [27]. Additionally, goal setting
and goal attainment scaling is a common intervention
used throughout the literature to promote health and
weight management among individuals with disabil-
ities [20,25,28].
Designing the healthy families intervention
The starting point of the program development
included data compiled from the focus groups, the
interviews and the literature review. The authors also
adapted components of the previously published
healthy lifestyles curriculum, ‘Health Matters’ [14].
This evidence-based curriculum was developed for
adults with developmental disabilities and has three
main components: physical activity, nutrition educa-
tion, and behavior management.
During this phase, cultural adaptations were con-
tributed by participants and focused on common per-
spectives and behaviors regarding food preparation
and consumption, ideas about exercise among Latino
immigrant families, and family routines, among other
adaptations. Two mothers participated actively by
providing feedback and helping design the healthy
lifestyles intervention, Healthy Families. Staff from the
CBO also provided regular feedback during the design
stage. From this process, a first prototype was devel-
oped that included evidence-based components cited
in various health fields including occupational ther-
apy, public health, and disability studies. These com-
ponents included a physical activity component
chosen by participants, health education, and family
goal setting [29]. Topics of health education covered
were those well-documented in the literature to be an
essential part of a healthy lifestyles program. These
topics included an introduction to healthy lifestyles,
discussion about healthy eating and healthy routines,
self-efficacy in planning and preparing meals and gro-
cery shopping, and the importance of exercising and
active lifestyles. These and other similar topics were
covered across 8 weekly, 2-hour sessions in which the
whole family was invited to participate.
Early pilot-testing of the healthy families program
Conducting an initial trial intervention with the com-
munity of interest in field conditions is an important
step in beginning to build preliminary evidence for its
impact and benefits [30]. One such way to create
early evidence is to conduct a formative evaluation
[30], this step of CBPR requires researchers maintain
a stance of openness to further shaping the interven-
tion to meet the needs of the community. Seventeen
Latino immigrant families with youth and young
adults with IDD ages 10–25, recruited by the local
CBO, participated in the pilot intervention. Benefits
of this initial implementation to families’ routines and
goal achievement are described elsewhere [9].
Evaluation and further development of
the program
The prototype of the intervention underwent modifi-
cations based on results of previous phases and con-
tinual feedback from participants. The end result was
a culturally tailored, healthy lifestyles program
adapted to meet the expressed needs of its partici-
pants. The resulting protocol included several cultur-
ally tailored adaptations chosen by participants or
developed in collaboration with community stake-
holders. Examples of further culturally tailored adap-
tations included incorporating foods from
participants’ culture such as mango, tortillas, beans,
and salsa; choosing Latin music to dance Zumba and
Salsa; offering the intervention in Spanish; and creat-
ing a modified version of the MyPlate graphic (avail-
able through the United States Government) that

better reflected families’ eating habits. MyPlate is a
photo of a plate depicting different bright colors rep-
resentative of veggies (green, yellow, red), protein
(brown), and fruits and dairy [31].
Another cultural adaptation included the introduc-
tion of goal-setting through a traffic light system [29].
The traditional goal-setting and behavior management
approach often used in health promotion programs
was adapted for this study. Traditional goal-setting
concepts are rooted in Western values of empower-
ment and self-control [32,33]. However, working class
Latino immigrants may not necessarily have a history
of taking control of their lives and making decisions
for themselves and are more likely to value collectiv-
ism and family values [34]. When parents expressed
confusion about the goal-setting activity, researchers
quickly introduced a traffic light terminology and vis-
ual aids were used to promote participant engage-
ment. This activity designed by occupational therapy
students was very well received by families. The traffic
light system metaphor helped families identify new
healthy habits they wanted to start (green light; e.g.
ask youth with disability to help prepare dinner at
least 5 times a week) and continue (yellow light; e.g.
continue to walk kids to school) and unhealthy habits
they wanted to decrease or stop (red light; e.g. stop
eating white bread every day).
During this phase, researchers transitioned into a
more formal summative evaluation of the intervention
using a quasi-experimental, mixed methods design.
Periodic assessments were conducted to examine the
impact of the program on several outcomes.
Sustaining the intervention and utilization
of findings
Ultimately, the goal for the partnership was to sustain
an evidence-based intervention at the community level
and to translate knowledge from the project into con-
crete practices and products that support Latino fami-
lies in sustaining healthy lifestyles. In order to promote
sustainability of the intervention, researchers kept
detailed field notes of the activities and lessons imple-
mented throughout. Additionally, in an effort to trans-
late knowledge, a curriculum was developed at an
appropriate literacy level in both English and Spanish
to be given to the CBO to sustain the intervention
regardless of the researchers’ presence. Findings about
the program’s evidence-based components and effect-
iveness have been disseminated throughout the com-
munity through meetings with stakeholders,
presentations, and publications. Researchers have also
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 5
promoted the intervention and discussed its effective-
ness at town hall meetings with state officials and com-
munity members in order to translate the knowledge of
effective healthy lifestyles programming gained from
the project to other communities [35].
The following section describes a focus group quali-
tative methodology used to test the impact of the pro-
gram during the advanced development phase. The
study described below, as well as the participants, is
different from the focus groups conducted during the
early development phase. The focus groups conducted
in the first phase of development were designed to
identify needs. The phases above took two years before
the impact of the program was actually examined.
Qualitative study: Examining the impact of the
intervention
Focus groups are a qualitative methodology often
used with vulnerable populations, deemed as an
appropriate method to bring the voices of marginal-
ized communities into participatory research [36].
Consequently, focus groups are particularly well
suited for conducting research with Latino immigrant
families with youth and young adults with disabilities.
Use of qualitative research, such as focus group meth-
odology, help educators, researchers, and practitioners
examine impact from the perspective of participants
and further develop programs that meet the needs of
vulnerable populations that are experiencing less than
optimal access to health care and poorer health status
than the majority group [36].
Method
Participants
Twenty-four Latino families with youth and young
adults with IDD ranging in ages from 10 to 25 par-
ticipated in the 8-week intervention. The intervention
was offered in the community at the local CBO which
had a large meeting room and access to a kitchen.
Some of the parents in this phase of the intervention
had participated actively in the initial development of
the intervention. Two focus groups were conducted
with 6 parents each. Participants included one father
and 11 mothers. Focus groups were conducted at the
same facility where the intervention was offered.
Intervention
The intervention was delivered in Spanish at the local
CBO and was co-facilitated by mothers from the
6 Y. SUAREZ-BALCAZAR ET AL.
community who volunteered to lead the Zumba ses-
sions, and assisted youth in the preparation of healthy
snacks. The intervention was delivered by bilingual
occupational therapy and nutrition students along
with the first author of this manuscript. The interven-
tion included 45 minutes of dance chosen by partici-
pants which included Zumba and Salsa; 30 minutes of
nutrition education and snack preparation; and
45 minutes of goal-setting and social learning through
group discussions. To be consistent with Latino values
regarding family unity, all family members were
invited to participate.
Design
The researchers used a focus group methodology to
examine participants’ views regarding impact of the
intervention and enhance its sustainability within the
agency. Other pre and post assessments on a number
of important outcome measures not described here
were also utilized. Such outcomes included measures
of self-efficacy, social support, home food inventory,
physical activity, and knowledge about healthy foods.
The goal of the focus groups was to examine impact
and benefits from the perspective of the parents and
further improve the intervention in order to prepare
for long term sustainability and knowledge translation.
Researchers followed a focus group protocol based on
the Kruger and Casey (2015) guide to focus group
implementation. Focus groups were transcribed verba-
tim and the data was classified based on thematic ana-
lysis according to the following themes: (1) Reasons
for participation in the program; (2) what participants
liked the most about the intervention and how it had
impacted their families; and (3) challenges participants
experience in maintaining healthy lifestyles.
Focus group data analysis
Focus group data was analyzed using the analytic
framework of the Constant Comparative method in
which the main purpose is to identify patterns in the
data and relationships between concepts, including
themes, similarities, and differences [37]. Additionally,
the data trustworthiness was enhanced through the
process of establishing credibility and confirmability.
As such, researchers debriefed with participants on
the main issues raised during the focus groups, direct
observations during the sessions confirmed many of
the statements shared by participants, and participant
checks were conducted throughout the focus groups.
Furthermore, two independent coders, one not famil-
iar with the study, conducted the analysis of the
qualitative data, by identifying themes and classifying
quotes to reduce the potential for bias and ensure
consistency in themes and inter-observer agreement.
Results
Focus group results
Results are presented according to the questions asked
and the themes that emerged from the analysis of the
focus group data.
Reasons for participation in the program
All focus group participants alluded to the scarcity of
healthy lifestyles and wellness programming in the
community. Some also shared difficulties related to
being denied access to community programs and the
limited number of programs and opportunities avail-
able to them. After one mother said: ‘If I was not
here with my family [participating in this program],
the kids would be watching TV all day, there aren’t
many things for them to do where they learn some-
thing and have fun.’ Many parents nodded and
expressed agreement with her statement. Parents also
appreciated that the program was offered in Spanish
and that the whole family was welcomed. One mother
said, ‘My children look forward to coming every
Saturday. They are the ones saying … let’s go, let’s go
we don’t want to be late.’
Aspects of the program participants liked the most
and perceived impact
Based on focus group data, several themes emerged in
this category. Specifically, themes included (1) healthy
lifestyles components of the intervention; (2) the
social learning aspect of the intervention; (3) inclu-
sion of the whole family and of youth with and with-
out disabilities; (4) participation in the community;
and (5) peer advocacy.
Healthy lifestyles components of the intervention.
Participants alluded to enjoying the physical activity/
Zumba class and the fact that this session was led by a
mother. They found engaging in Zumba and physical
activity to be relaxing. One mother said ‘the exercise
[Zumba session] is a physical relief. So for me, it is
excellent. I love it. It is fun and now I am trying to do
more of it at home.’ Another mother reported: ‘I have
learned about the importance of having an active life-
style, especially when you have kids at home. Being
active makes us all, the whole family, feel good.’

Participants also enjoyed preparing the snack and
learning about nutrition and how to plan and prepare
healthy meals at home. One participant commented,
‘At my house now there is no more soda. No soda.’
Another participant reported, ‘We eat more vegeta-
bles, more fruits. At home we now drink more dairy
products than we used to. The program has helped
with our nutrition.’ This was a generally shared senti-
ment among all six parents.
Parents also alluded to the ways the program has
empowered them to address challenges in establishing
meal preparation routines at home. Although it is
hard for families to change their routines, their
involvement in the program has positively influenced
their child’s ability to make changes more readily at
home. Another mother said, ‘It has helped us improve
our family routines. Now the kids have a role and
help out with setting the table and picking up after a
meal.’ Another mother said, ‘It is hard for the kids
when we change the routine, but it is our job to do
it.’ Another mother followed, ‘Because a lot of times,
we are busy with work and with our kids and we go
to what is easiest. We make what is easiest, anything.
So it [the sessions] helped me a lot with nutrition and
my son has also helped because he now tells me: ‘we
need to buy healthy food, no junk food.’ Other
parents affirmed the sessions’ role in promoting posi-
tive meal routines and nutrition at home overall. One
mother said, ‘He [referring to son with IDD] never
took breakfast before going to school because we did
not have time, and now we eat breakfast. Although I
take his breakfast to his school. He takes sliced water-
melon, melon, Mexican turnip, whatever fruit there
is. Or he will simply take an apple or a banana. In
the morning, always, every day, and a bottle of water.
So that is a change that has surprised me.’ The
mother appeared happy while reporting this change
and said this was not the case prior to participating
in the program. Another mother said, ‘Not much
soda. Water, water, water, at my home.’
Social learning aspect of the intervention. All focus
group participants alluded to enjoying connecting
with other parents with youth with disabilities during
the sessions, learning from one another, and not feel-
ing alone. A single dad of two adolescents with ASD
said ‘I work very hard at two job shifts, so I never get
out of the house for socializing and connecting. This
[program] is the only activity that I engage in at all
with the kids, and we also have fun. I have learned a
lot and feel that we are all healthier now as a family.’
A mother reported, ‘Out of this program we now
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 7
started a Zumba class once a week and two of us are
now walking together when we can.’
Inclusion of the whole family. Participants particu-
larly appreciated that the whole family was welcomed
to attend the sessions and that the sessions were
facilitated in Spanish. Participants alluded to no other
program in the community being inclusive to the
whole family. They were also pleased that other youth
without disabilities were welcome to attend. One
mother said: ‘It helps the kids without disabilities to
learn and feel comfortable being around kids with
special needs.’ Another mother said: ‘My son [adoles-
cent with IDD] now feels comfortable coming. At the
beginning he drifted around the room and did not
want anyone to touch him or dance with him. Now
he likes it, and he is the first one to be ready. It
helped him to see that everyone is welcome and that
there are other kids like him and not like him here
and other adults as well. He is more comfortable
around people now.’ All parents agreed that the fact
that the whole family was included made it easy for
them to attend and benefit from it.
Participation in the community. Several parents
made reference to their youth participating in the
community now, including going out on their own.
‘My son has his own bus pass now. He went to watch
that movie Wonder Woman. He loved it so much
that he had to see it again. From there he went to the
mall. Today he went to the city at 6 in the morning
to walk around. He likes to walk [mother shares this
with a sense of pride and happiness].’
Parents alluded to wanting their youth and young
adults with disabilities to be active in the community
and get out of the house more than they did before
participating in the intervention. ‘We want them to
go out and walk and be active. What happens is that
other people don’t know them. There are people that
they could get into trouble with, because they could
be mean.’ However, another mother alluded to her
child feeling comfortable navigating the community.
‘My son has grown up in this neighborhood and a lot
of the youth around his age know him. They have
known him since he was small. They all went to
school together.’ All parents recognized the import-
ance of being known in the community and letting
youth go out so that they learn, and so in the com-
munity get used to youth with disabilities as well.
Peer advocacy. Parents also shared stories of their
youth serving in the role of peer advocacy. One
8 Y. SUAREZ-BALCAZAR ET AL.
mother shared, ‘Someone on Facebook reached out to
him. She told him: ‘I see you always post about
autism’ and he said, ‘yes.’ And then the person told
my son, ‘You know I want to know more about how
I can learn more about autism because they just diag-
nosed my son with autism.’ ‘Don’t worry, my mom
went through all of that, what you are thinking. Don’t
hit your kid, listen to him. Be patient with him. I rec-
ommend that you go to Grupo Salto [the advocacy
organization we partnered with for this project]. I am
in the group and that way you can learn more, so
you can treat your son … ’ and I [the mother] said to
him: ‘you advised her?’ ‘Yes, I have to … you went
through the same thing, mom. So, I have to help her
now that she is going through the same thing with
her son.’
Challenges experienced by families in maintaining
a healthy and active lifestyle
Participants also made reference to experiencing the
greatest challenges when attempting to improve the
diet of their youth with disabilities, changing estab-
lished routines, and challenges in engaging their
youth in meaningful leisure and recreational activities.
Some parents thought other adults—teachers and rela-
tives—contributed to using food as a way to manage
challenging behaviors of their children with disabil-
ities. Moreover, a few parents shared experiences in
which they had been denied participation in commu-
nity recreational activities because of their child’s dis-
ability. Participants reported that their communities
did not offer family-oriented, accessible, and afford-
able health and recreational programming for them
and that the intervention Healthy Families was the
only program available to them.
Regarding engaging youth in active lifestyles, one
mother stated, ‘I live in front of the park, but he
[referring to son], doesn’t like to go because of the
snow, because of the heat. And now he says … ‘Do
you know why I don’t want to go walking?’ I respond,
‘why son?’ ‘Because there are a lot of dirty people
who leave their dog’s poop on the ground.’ Another
mother said, ‘I also live close to the park, and the
kids always have an excuse. I tell them that they need
to go and get out and play. I tell them to go. What
happens is that they are not accustomed to going out
on their own, they don’t go anywhere alone. Someone
has to go with them and then with my work schedule
it is difficult.’
Parents also expressed concerns regarding traffic
safety in the community. This included drivers not
obeying traffic laws such as stop signs and traffic
lights, not giving pedestrians the right-of-way, and
being distracted with their phones while driving. All
focus group participants agreed that traffic and walk-
ability safety was a serious concern. Parents did not
feel comfortable having their youth walking around
the community on their own due to their
safety concerns.
Based on the above finding and the realization that
walking safely for both parents and their youth and
young adults with IDD in their neighborhoods was
not only a major area of concern, but a barrier to
physical activity and community engagement,
researchers added a unit to the Healthy Families cur-
riculum focused on teaching safe walking habits and
the meanings of various traffic signs to youth with
disabilities. Once it was implemented in subsequent
replications, high levels of engagement from the youth
were apparent throughout the traffic safety activity.
The walkability engagement also led to another study
looking at safety in the community (see Suarez-
Balcazar, et al., under review) [39].
Despite the challenges families experience in main-
taining a healthy lifestyle, overall the focus group data
illustrated the views of parents on how they have bene-
fited from the intervention. Parents expressed high lev-
els of satisfaction and desire to support its
sustainability at the community level and consistently
alluded to changes in physical activity, consumption of
healthy foods and engagement in community activities.
Discussion
This study described a participatory process in which
the voices of the community were incorporated con-
sistently throughout different phases of a community-
based participatory research study. The active partici-
pation of Latino families with youth and young adults
with disabilities in the development of a healthy life-
styles program resulted in a culturally tailored inter-
vention that is meeting a need in the community.
Grounded in principles of emancipatory research and
the Scholarship of Practice model in Occupational
Therapy [18,22], this participatory study provided a
process to empower participants to take action in
engaging in healthy lifestyles. Participants shared
ideas on how they are doing things differently at
home to promote healthy eating among their family
members, how much they have enjoyed the Healthy
Families intervention, as well as engagement in phys-
ical activity outside the program such as walking and
dancing. In terms of challenges to engaging in healthy
lifestyles, they spoke of occupational deprivation and

lack of engagement in meaningful occupations [4].
Actively engaging community members and providing
opportunities for leadership during interventions fur-
ther promotes program sustainability and offers a
sense of individual and group empowerment.
Practitioners also need to engage with diverse com-
munities to tailor interventions to meet their needs by
listening to views and concerns of families and youth
with disabilities from diverse backgrounds.
Families and community stakeholders provided
input and expressed their voices throughout the pro-
cess to assist in the development of a culturally tail-
ored meaningful intervention. For instance, the
component chosen by Latino families, such as danc-
ing Zumba and Salsa, is consistent with their culture
in addition to an enjoyable occupation found to
impact health and well-being [24,26]. Researchers
have stated that dancing is a socially and intellectually
demanding physical activity as well as leisure activity
[38]. The inclusion of cultural components increases
the likelihood of families relating and enjoying the
intervention, increasing its sustainability at the com-
munity level [5].
Importantly, the qualitative study was critical not
only in understanding the issues Latino families face,
but also capturing parents’ perceptions on impact.
This participatory study has important implications
for occupational therapists and health professionals. It
describes a participatory process and integrates the
voices of Latino families throughout the development
and implementation of the intervention designed to
meet a need in the community. Practitioners can lis-
ten and integrate strategies identified by community
members for engaging in healthy lifestyles, ensuring
strategies for change are relevant and relatable to the
population involved. It is important for practitioners
and researchers to incorporate cultural issues at the
program level and partner closely with the commu-
nity to enhance program sustainability.
This study also informs health professionals on the
barriers faced by immigrant Latino families with
youth and young adults with disabilities to participate
in the community and live healthy and engaging lives.
These barriers may not only apply to Latino immi-
grant families entering the United States, but to the
many immigrant families with children with disabil-
ities migrating to European countries as well.
Practitioners can consider how the lack of community
programs inclusive to the entire family impacts the
family system [8]. Future research is needed to exam-
ine these influences on the health and well-being of
the family as a whole and the relationship between
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 9
lack of engagement in healthy lifestyles and occupa-
tional deprivation.
One of the limitations of this study relates to the
measure of impact of the intervention. Despite follow-
ing a rigorous process for analyzing the qualitative
data, a focus groups methodology is not sufficient for
examining impact. Future research may consider tri-
angulating several qualitative and quantitative meas-
ures of impact. Given that the interventions
developed and implemented through the use of CBPR
are often tailored to a specific community’s needs and
preferences, it can be difficult to generalize findings
to broader contexts. Additionally, as CBPR seeks to
understand and address the dynamic needs of com-
munity members, researchers are often faced with the
decision to adapt the intervention or maintain con-
sistency for the sake of understanding the specific
intervention’s efficacy and fidelity. Adapting the inter-
vention is a decision the broader research community
often regards as compromising the study’s rigor due
to lack of standardized intervention protocol.
Additionally, with a constantly changing intervention,
it can be difficult to train research personnel as there
is no specific manual that is rigidly followed.
However, adapting the intervention in response to
community perspectives remains faithful to the core
of CBPR. Finally, given that CBPR is often conducted
among marginalized and vulnerable populations,
researchers must consider the challenges the power
dynamic between themselves and participants pose
[18]. This calls for reflections on the role of the inves-
tigators in shaping the research agenda and guiding
the development of the intervention. This power dif-
ferential may cause participants to be hesitant when
providing feedback on an intervention [18,22]. It is
important that CBPR teams invest substantial time
into developing rapport with participants and build-
ing a foundation of mutual trust in order to facilitate
a safe environment where participants feel empowered
to share challenges they are facing as well as con-
structive feedback regarding interventions that matter
to them.
Given the benefits resulting from the social learn-
ing aspects of the program, researchers enhanced this
component in subsequent program replications
including the current quasi-experimental design. All
health and nutrition discussions are now followed by
open discussions between participants about how
each family handles situations at home, at school or
in the community. This has resulted in very vibrant
conversations and sharing of ideas. Based on this, a
Family Navigator was developed and disseminated to
10 Y. SUAREZ-BALCAZAR ET AL.
all parents. The Family Navigator is a guide that con-
tains strategies shared by parents on ways to sustain
their health and well-being at home, school, and in
the community.
Acknowledgements
This project was funded by a grant from The Chicago
Community Trust to the University of Illinois at Chicago,
Department of Occupational Therapy. We are grateful to
all the families who participated in this study and to our
community partner, El Valor Corporation, whose staff
helped in the development and implementation of the
intervention. We are also grateful to parents of Grupo Salto
who assisted on this project. Several occupational therapy
students have been involved in this initiative.
Disclosure statement
The authors report no conflict of interest. The authors alone
are responsible for the content and writing of the paper.
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