Parent Perspectives of Participation in Home and Community Activities When Receiving Part C Early Intervention Services

Abstract

The authors examined the extent to which parent expectations, perceptions about resource availability and supports, and strategies used to promote participation in home and community activities varied by setting and activity type. Sixteen 90-min semistructured interviews were completed with families receiving Part C early intervention services in three states. Interviews were analyzed in descriptive and interpretive phases using content analysis to identify patterns across cases and logical analysis to cross-classify data and identify patterns by setting and activity type. Parents described how often and how much their children participated but had different ways of describing their expectations depending on the activity setting and/or its purpose. Parent-reported strategies to promote participation provided a direct way of understanding how environments were perceived to impact participation. Implications for tailoring interventions to address the needs of immigrant and nonimmigrant families receiving Part C services are discussed.

Keywords

participation environment strategies families immigrant early intervention

The World Health Organization (WHO) recognizes participation as a key indicator of human health and well-being, the outcome of greatest importance to persons with disabilities, and, in turn, the ultimate objective of rehabilitation services (WHO, 2001). For infants and toddlers with, or at risk for disabilities, Part C of the Individuals With Disabilities Education Act (PL 108-446) defines quality early intervention services as adherence to four core principles: (a) service coordination, (b) child development, (c) family-centered care, and (d) inclusion. Inclusive practices are those efforts to identify health, social, educational, and support services that promote a child’s full participation, regardless of ability, in the natural settings that comprise family and community life. By definition, participation is an indicator of full inclusion.

These four core principles governing Part C early intervention provide general guidelines for how research evidence should be generated and applied to guide decision making about service provision (Buysse & Wesley, 2006; Law, 2002). Participation is also represented in two frameworks for research and practice. The International Classification of Functioning, Disability, and Health (ICF) and the version for children and youth (ICF-CY) provide common language to describe health and disability in rehabilitation (WHO, 2001). The Developmental Systems Model (DSM) is a second framework that references participation as outcome and provides guidance for Part C early intervention service delivery (Guralnick, 2005).

Both the ICF-CY and DSM frameworks reflect contemporary theory and scientific evidence about the dynamic interplay between children and their contexts and how this transaction is related to their health and development (Brofenbrenner, 1979; Florian et al., 2006; Ford & Lerner, 1992). As children participate in meaningful routines, rituals, and activities, they are afforded opportunities to acquire knowledge, skills, and relationships that are purposeful and culturally valued (Dunst, 2001; Keogh, Bernheimer, Gallimore, & Weisner, 1998; Rogoff, 2003). Practitioners operating from the ICF-CY or DSM frameworks should emphasize facilitating a child’s participation in everyday activities as a means of enhancing developmental outcomes. To do so, practitioners need to better understand (a) the activities families identify as important for children’s participation, (b) how families evaluate their child’s extent and quality of participation in one or more activities, (c) what factors impact whether families choose to participate, and (d) how families promote participation.

In response to this need, researchers have identified the important contexts (i.e., activities) and factors associated with participation (i.e., child, family, and environmental factors and ways that families rearrange their daily lives to accommodate their child with a disability). Four themes were identified in the literature that help to further characterize the concept of participation with more specificity. These themes include (a) spatial patterning (i.e., participation in home and community settings), (b) temporality within and between home and community settings (e.g., activity schedule and daily routine), (c) three overarching goals toward which participation is oriented (i.e., health and sustenance, learning and the development of skills and capacities, and enjoyment and well-being), and (d) four components of participation, which include organizational and staff attitudes and parent belief systems, activity settings or participatory learning opportunities, available resources (economic, institutional, physical, social, and attitudinal), and developmentally appropriate and family-friendly practices and adaptations (Buysse, Skinner, & Grant, 2001; Dunst, Hamby, Trivette, Raab, & Bruder, 2002; Gallimore, Goldenberg, & Weisner, 1993). Based on these themes, a working definition of young children’s participation was proposed:

For infants and young children, participation as outcome is characterized by involvement in organized sets and sequences of activities that typically involve the presence and engagement of others. These life situations are setting-specific (i.e., home, community) and, in addition to promoting the learning and development of skills and capacities, may serve an overarching goal of achieving health and sustenance and enjoyment and well-being. (Adapted from Coster & Khetani, 2008)

Researchers have gathered evidence about the important everyday activities in which young children with disabilities participate, factors that impact their participation, and strategies used to promote their participation from the parent perspective. Participation is conceptualized as being highly variable because parents’ goals can vary when compared with other families, across activities and over time (Tamis-Monda et al., 2007). However, less work has been focused on synthesizing and examining the relationship(s) among these three bodies of evidence. In this study, we examined how parents involved with Part C early intervention services defined, appraised, and strategized to promote their young child’s participation in specific activities that comprise home and community life. The main questions this study addressed were as follows:

What are parents’ expectations of their young child’s participation in everyday activities?

To what extent are parent expectations of participation similar or different when compared between home and community settings?

To what extent are parent expectations of participation similar or different when compared across activities within the home or community setting?

What types of child, family, and environment factors do parents identify as supporting or challenging participation in everyday activities?

To what extent are the factors that parents perceive to be impacting participation similar or different when compared between home and community settings?

To what extent are the factors that parents perceive to be impacting participation similar or different when compared within the home or community setting?

Method

We used a qualitative approach in this study to gather rich descriptive accounts from families receiving Part C early intervention services about their experiences with participation in specific settings and activities. We used a purposeful maximum variation sampling strategy to gather information from parents who were expected to have different experiences of the phenomena being studied (Patton, 2002). We sought variation according to the child’s age, eligibility, geographic region, and caregiver.

Participant Recruitment

Participant recruitment began once approval for this study was obtained from the Institutional Review Board. The assistant director for early intervention programs in Massachusetts distributed recruitment materials to program directors and regional representatives throughout the state. We made on-site visits at two service agencies whose directors expressed interest in the study to clarify the study purpose and eligibility. We also brainstormed ways to recruit underrepresented groups (e.g., immigrant families) to further diversify the sample and identified alternative interview locations (e.g., agency open house). Service providers then served as liaisons to the families. We pursued recruitment in Milwaukee, Wisconsin, and Portland, Oregon, to further diversify the sample geographically given the state-to-state variation in the enactment of Part C services (National Research Council and Institute of Medicine, 2000).

Once contact information was obtained, we made telephone contact with participants to determine study eligibility according to the following criteria: (a) The child was reported as having an individualized family service plan in place that indicated active enrollment in Part C services, (b) the child was reported as having received Part C services for at least 3 months, (c) the child was between 12 to 36 months at the time of the interview, (d) the caregiver self-identified as an adult involved in the unpaid provision of routine care for the child (e.g., mother, father, and grandparent), and (e) no siblings were reported to have received Part C services to ensure that participants had similar knowledge and experience with Part C services. A total of 24 families expressed interest in the study between March and August 2009, and 16 participants met all eligibility requirements and were enrolled in the study during this period.

Table 1 presents demographic characteristics of the 16 participant families. Diagnostic conditions represented in the children include Hemiplegia (n = 1), Down’s Syndrome (n = 1), Mosaic Trisomy 9 (n = 1), and an Autism Spectrum Disorder (ASD), including Autism (n = 1) and Pervasive Developmental Disorder–Not Otherwise Specified (PDD-NOS; n = 2).

Table 1.

Background Characteristics of Participants and Their Children

Mother	Cultural background	Education and employment status	Annual income	Family composition	Neighborhood	Child (age, gender)
(1) Diane	White, nonimmigrant	Some college, not employed	<US$15,000	Single, 1 child	Small urban	35 months, male
(2) Melanie	White, nonimmigrant	Bachelors or higher, part-time	>US$75,000	Married, 2 children	Small urban	19 months, female
(3) Keisha	Black, nonimmigrant	Bachelors or higher, not employed	<US$15,000	Single, 1 child	Major urban (Wisconsin)	35 months, female
(4) Jessica	White, nonimmigrant	GED, not employed	US$50,000–US$75,000	Married, 1 child	Small urban	28 months, male
(5) Kate	Haitian, immigrant	Some college, not employed	US$15,000–US$25,000	Married, 2 children	Major urban	35 months, female
(6) Fiona	Brazilian, immigrant	Bachelors or higher, full-time	US$15,000–US$25,000	Married, 2 children	Major urban	12 months, male and female
(7) Kathy	White, nonimmigrant	GED, not employed	US$15,000–US$25,000	Married, 5 children	Major urban	32 months, Male
(8) Tamika	Black, nonimmigrant	Some college, not employed	US$15,000–S$25,000	Single, 2 children	Major urban	23 months, male and female
(9) Julie	White, nonimmigrant	Bachelors or higher, full-time	>US$75,000	Married, 2 children	Small urban	30 months, male
(10) Judy	White, nonimmigrant	Bachelors or higher, not employed	US$50,000–US$75,000	Married, 2 children	Small urban	12 months, male and female
(11) Jill	White, nonimmigrant	Bachelors or higher, not employed	>US$75,000	Married, 3 children	Rural	28 months, male
(12) Cameron	White, nonimmigrant	Bachelors or higher, part-time	>US$75,000	Married, 2 children	Major urban (Oregon)	42 months, female
(13) Malathi	Indian, immigrant	Bachelors or higher, not employed	>US$75,000	Married, 1 child	Major urban	15 months, female
(14) Tatiana	Brazilian, immigrant	GED, part-time school	US$15,000–US$25,000	Married, 2 children	Major urban	24 months, male
(15) Nina	Moroccan, immigrant	GED, not employed	US$15,000–US$25,000	Married, 1 child	Major urban	23 months, male
(16) Katya	White, nonimmigrant	Less than high school, not employed	<US$15,000	Married, 1 child	Major urban	30 months, male

Note: GED = general educational development. All names are pseudonyms. Cases 6, 8, and 10 include families who have twins that are receiving Part C services. Case 12 includes a family with a child above 36 months but who had been transitioning out of Part C services at the time at which the interview was conducted.

Data Collection

Ninety-minute, semistructured interviews were conducted in English. All interviews were conducted by the lead investigator whose interest in the topic came from her prior work as an occupational therapist delivering Part C services in Southern California, her experiences as a new parent to a 13-month old daughter born near-term, and her lived experience growing up in a low-income immigrant household. The interview guide was informed by core components of the ecocultural model (Rogoff, 2003; Weisner, 2002) and was developed in parallel with a guide being used in a similar study that involved gathering parent perspectives to inform the design of a participation and environment survey for school-aged children with disabilities (Bedell, Khetani, Cousins, Coster, & Law, 2011). Caregivers were asked to describe the child’s extent and quality of participation across a predefined set of home and community activities, identify strategies that they perceived to be effective for involving the child as participant, and report on factors that they perceived to help or hinder the child’s participation. Data were collected from 16 participants who initially expressed interest in the study and who met all eligibility criteria. As participants’ responses from the last few of the 16 cases indicated redundancy with respect to the research questions, we did not proceed with participant recruitment and data collection beyond the 16th participant. Each participant was issued a US$20.00 gift card.

Data for this study were drawn from three sources: (a) a transcript for each interview; (b) a field note completed by the lead investigator for each interview to document information about session content and format, questions and/or concerns that arose during the session, and self-reflections; and (c) periodic memos composed by the investigator to document thinking about emerging patterns within and across interviews. Transcripts were developed by having each interview audiotaped and transcribed verbatim by a graduate research assistant who was enrolled in an entry-level occupational therapy program and then cross-checked with the digital recording to ensure accuracy.

Data Analysis

We used established procedures to address the credibility, dependability, and transferability of data (Patton, 2002).

Credibility

Two methods of ensuring the credibility of the findings include member-checking procedures and triangulation of data (Lincoln & Guba, 1985). The lead investigator conducted seven 30-min follow-up interviews to check whether interpretations being made by the research team were consistent with the parents’ perspective. Follow-up interviews were also used to confirm or disconfirm preliminary findings about the level of specificity with which parent-reported strategies and environmental factors were reportedly impacting participation. Three of the follow-up interviews were with immigrant families, which were preceded by two key informant interviews, one interview with a researcher and the second interview with a practitioner, both of whom had experience engaging immigrant families directly in their work. The key informant interviews were used to help frame questions in clear and concise ways that would facilitate dialogue about acculturation processes that are associated with activity selection, perceptions of environmental supportiveness, and strategy use. All seven participants who participated in the follow-up interviews were mailed a five-page written summary of preliminary findings to review prior to being interviewed.

We triangulated data by using multiple data sources and completing multiple phases of analysis (Patton, 2002). We analyzed data in descriptive and interpretive phases using NVivo 7.0. For the descriptive phase, the first seven cases were analyzed by the lead investigator and the graduate research assistant who each sorted relevant content from the interviews to the interview questions (Charmaz, 2006). We then sorted the content within each of these guiding questions according to recurring regularities in the data (Patton, 2002) and developed a codebook with general and specific descriptive codes for each interview question. Code labels were developed using participants’ own words and phrases as derived from supporting text and reviewed to ensure internal and external homogeneity, meaning that each code had supporting text and differences among codes were clear (Lincoln & Guba, 1985). For the interpretive phase, we sorted text content from nine remaining cases to the corresponding general and specific descriptive codes in the codebook.

Strong analytic directions were being established by the 13th case, at which time, the data were queried to understand whether the participants’ descriptions of their standards for participation were (a) uniquely expressed in the context of a specific situation at home or in the community, (b) expressed similarly in two or more situations within the home or community, or (c) expressed similarly in both settings. The lead investigator performed additional queries to identify similarities and differences in how strategies and factors were described by parents by situation and setting. Query results were compared with memos being developed by the lead investigator to depict hypothesized relationships in how participation was being evaluated and supported in situation and setting-specific ways. We coded three more transcripts to the codebook and compared coded text with field notes taken during the interview, as well as query results, to elaborate and deepen earlier analyses until saturation was reached for all guiding questions (Patton, 2002).

Dependability

We ensured dependability of the study findings by having multiple reviewers of the data and by completing the descriptive phase of analysis in three rounds. For each round, the lead investigator and graduate research assistant separately coded responses from two to three transcripts, generated a coding comparison report, and convened by telephone to discuss areas of convergence and reconcile areas of divergence. This process was repeated until no new issues from the first seven cases were found to warrant discussion and consensus, after which the lead investigator submitted the codebook to two members of the investigative team for feedback about the match between text and coding labels. During the interpretive phase, an additional coding report was reviewed by the lead investigator and graduate research assistant to monitor and ensure that text content continued to match assigned code labels.

Findings

Study findings are presented in three sections, each consisting of themes accompanied by illustrative quotes chosen as exemplars (Mishler, 1990) of each theme. The section titled “Parent Expectations of Participation” describes study findings pertaining to Study Question 1 (Parts a and b), and the sections titled “Child, Family, and Environmental Factors Impacting Participation” and “Parent Strategies for Promoting Participation” describe study findings pertaining to the second study question (Parts a and b). All references to participants use pseudonyms.

Parent Expectations of Participation

How often

Parents in this study reported on how often their child participated across activities in the home and community. Parents described their children as participating in home-specific activities several times a day, daily, or several times a week. In comparison, parents described participating with their child weekly, several times a month, or occasionally in community-specific activities. Parents stressed that they made many more attempts at getting out of the house than were successful, so that their estimates of how often they participated in the community reflected how often they actually arrived at their destination. For example, Keisha said, “We look to get ourselves there . . . and we probably, because we walk a lot of places, it’s not short . . . That doesn’t happen a lot, but when we get there, that’s good enough.” Some parents noted seasonal effects that influenced their estimates of how often they participated with their child. As Jill explained, “Yeah, like in the winter he doesn’t go out a lot, it’s probably bath every other day or every few days, but um . . . because it’s summer it’s been every single day.”

Parents also explained that it was important for their children to (a) help out with one or more steps of an activity and (b) interact with others (e.g., parent, sibling, peer, babysitter) while engaged in an activity. Although their estimates of frequency differed by setting, the ways parents described their child’s helping and interactive types of contributions were more contingent on the purpose of the activity rather than where it took place. Parents emphasized different ways that their children were expected to be helpful and interactive depending on whether they were describing their child’s involvement in nondiscretionary activities that contribute to maintaining a household (e.g., household routines and chores, community excursions and outings such as shopping for groceries) or discretionary activities that typically serve to support family life by providing opportunities for enjoyment and well-being (e.g., interactive play and gatherings at home, organized activities and classes, recreation in the community).

Helpfulness

For nondiscretionary activities in the home and community, parents in this study expected their child to be helpful by following through, being efficient, and demonstrating good behavior (i.e., following rules). For example, Keisha involves her daughter in meal preparation at home by

at least hav(ing) one thing a day that she can help prepare. Um, something as simple as corn on the cob. I put the water in the pot and she puts the corn in there. Or Jell-O, or making muffins, just something very simple (like) putting ice in the cup.

Kathy and her husband also break things down to enable their son to participate in grocery shopping:

My carriage is always overflowing, sometimes . . . he tries to help me put everything on the counter from his seat. . . . at the register, he’s like “help, put this on” he wants to help put it on the belt . . . my husband actually just this weekend said to D., “if you want to take them out you have to put them on the table, that’s where we’re gonna put them first.”

In contrast, helpful contributions to discretionary activities at home or in the community often meant that the child initiated, made choices, and regulated his or her own behavior. Diane talked about her son initiating and making choices and “for story time he chooses, he usually gets to choose between Mercer Meyer books or Dr. Seuss books . . . whenever he brings me a book, we stop, drop, and read.” Jessica described her son making choices and remaining composed long enough to participate in a crowded community event:

Like we went to the early intervention Halloween party, and . . . he made it through 45 min and I know he shut off because he literally, he’ll be looking at something and doing something, and then he turns his head down and to the side and he’s just gone, and it’s very, very visible. And then he’ll start softly singing to himself sometimes when he’s really overwhelmed or go into a small closet or room to breathe.

Many parents in this study confirmed the importance of their children having the capability to regulate their emotions in public. In Jennifer’s situation, the home is used as a preparatory setting for her son to practice taking breaks during social gatherings with friends and family:

He tends to be a very high-energy child . . . so we’ll bring his pack n’ play and just a couple of toys, and he’ll sit nicely in there until he gets bored, and then he’ll get out and somebody will chase him around, then it’s back.

Interaction

For nondiscretionary activities, parents emphasized interactive skills that could be used for direct engagement, such as communicating (i.e., smiles, eye contact, affection, and gentle touch), showing excitement, and cooperating (paying attention and not making a lot of fuss). In contrast, parents described both direct and indirect ways that their child could demonstrate being interactive during discretionary activities. Examples included the child directly playing with an adult or peer (i.e., sharing and turn taking), “staying in the mix,” or entertaining himself or herself in the presence of outside company. Cameron described her daughter playing alone, saying, “There are times when I’m in the kitchen . . . and she’ll just have the doll and you know opening and closing the eyes and things like that, and that’s okay too.” Other parents like Jennifer sought out direct social interaction because of her son’s diagnosis:

I look at primarily I think for the quality of the interaction, how happy he is about the interaction, if he’s giggling, if he’s smiling, if he’s bringing things over to show you, if he’s engaging you, like he’ll do this thing only with his therapist where he, on purpose, will put a train in between the sectional . . . and he’ll do it purposely, and he’ll grab her hand and like make her go get it for him. I look for that maybe more than other moms. I look for his interaction with other people and how social he is.

As shown, parents in this study emphasized different aspects of their child being helpful and interactive depending on the particular goal of the activity, irrespective of where it took place.

Child, Family, and Environmental Factors Impacting Participation

General factors impacting participation

As infants and toddlers are often guided to participate in activities, parents in this study generally described the importance of finding activities that were of interest to both them and their children. Parents often assessed their child’s readiness, mood, and attention that day, as well as their own, to gather information that could help them assess “how much activity to attempt” on a given day. Some parents described variable or harsh weather conditions as affecting the amount of time they chose to spend at home. Tamika describes how much of a barrier the weather was to getting out and accessing the community:

We don’t just wanna sit in the car all day, and nobody wants to get stuck on a bus ride, and we really do like to walk because I need the exercise and it kind of gives them a little break or whatever . . . there’s a separate park (in the neighborhood) and we walk down there sometimes . . . (but only) when it’s dry.

In contrast, other families in this study described the weather as neither helping nor hindering community participation. Parents like Melanie have lived in harsher climates for long periods of time and perhaps have become more acclimated, and so the weather presented minimal challenges to accessing the community such that

we’re on the bus, she’s got her snowsuit, the scarf over her mouth, and her glasses and . . . usually a big pair of mommy’s wool mittens versus the baby mittens. You know keep you very warm. But we’ve, we’ve got it all, down.

Home- and community-specific factors impacting participation

Parents were asked to describe the types of resources needed to support their child’s participation in each setting. Parents in this study described the need to have access to adequate supplies and information, space, and social and professional support but used different examples for the home and community settings. They also identified the need to be informed about policies and their schedule to make informed choices about what to do as well as when, how, and with whom to do them. Table 2 provides examples of general, home, and community-specific resources that parents identified to support their child’s participation in one or both settings.

Table 2.

Parent-Reported Factors Influencing Participation in Home and Community Activities

	Home factors	Community factors	General factors
Social and professional support	Spouse, extended family, friends, EI staff and therapists, babysitter/nanny	Extended family, friends, neighbors, child care providers, and employees at stores	Preferences/personalities (readiness, mood, attention, and interests of the child and parent about what to do) Weather conditions (affects how much we do outdoors and the types of things we do indoors)
Policies	Housing (e.g., no pets)	Employer (e.g., parental leave, vacation time, and telecommuting)
Supplies and information	Television, food, clothes, and toys	Transportation, parking, internet, and phone
Schedule	Work schedule and cleanup time	Activity schedules of multiple kids
Space		Proximity, clean, and safe

Note: EI = early intervention.

In addition to the factors described in Table 2, five parents in this study who identified as having an immigrant background reported additional resources influencing their child’s participation in home and community activities. These parents identified resources such as supplies and access to information (expanded cable television and internet subscriptions and long-distance phone coverage) to stay abreast of international current events and remain closely connected with close friends and family still residing in their country of origin (e.g., grandmother uses Skype to sing the young child a lullaby in the Hindi language). These five parents also emphasized having less discretionary funds to expend on community activities with their child because they needed to use a large portion of their income to fulfill their responsibilities in supporting the housing, educational, and matrimonial needs of extended family who were still residing in their country of origin and who played an active role in their child’s life. Finally, all five parents relied on the availability of an international grocery store to purchase specialty supplies needed to engage their child in meaningful meal preparation (e.g., purchasing seasoning to prepare Koobideh, a Persian meat kabob, with their child) and to also access information about cultural events in their community. Four families belonged to an immigrant community within which events such as religious services and potlucks were organized for their family.

Parent Strategies for Promoting Participation

Young children are typically coparticipants in activities with their caregiver. In this study, parents were asked to describe what they were doing when their child’s level of involvement was meeting their expectations to gather information about the types of strategies they had developed to enable their child’s participation. As shown in Table 3, parents reported on strategies they had developed to promote their child’s participation in one or more specific activities that occur within the home or community setting. For each setting, parents in this study identified different examples of their strategies to promote their child’s participation. These parent-reported strategies fell into one of the following three categories: (a) rest and respite, (b) managing behavior in both the home and community, and (c) planning and preparing. In addition, parents identified other strategies to promote their child’s participation in one of the two settings. To promote the child’s participation at home, parents described strategies for communicating effectively with their child during home activities, ensuring smooth transitions between activities at home, and organizing space at home to ensure novel experiences within the home. Parents also identified their strategies to promote community participation, most notably for activities related to excursions and outings, such as getting information about community activities, maintaining safety while engaged in community activities, and advocating for the child when interacting with people in the community.

Table 3.

Parenting Strategies to Promote Participation in Home and Community Activities

	Home strategies	Community strategies	General strategies
Rest and respite	Cosleeping Television time Encourage activity near bedtime	Child care at gym Mall play spaces	Maintain an identity apart from being a parent (couple time; e.g., planning date nights) Negotiate parenting roles and responsibilities (tag-team effort; e.g., split up housework duties and split up carpooling duty) Effectively parent child Keeping it clean (e.g., hand sanitizers and wipes) Keeping it short (e.g., break down routines throughout day; spread out errands throughout week) Keeping it running smoothly (e.g., picture schedule, songs, toys, and counting during transitions between activities) Keeping it calm (e.g., music in the background in home, store, and car)
Managing behavior	ABA feeding program	Have a Plan B Praise the positive Arrive early Backpack leash
Planning and preparing	Easy food preparation Lay out clothes night before music mixes People come visit us	Bring supplies and big guns Designated car toys Cart games to occupy child
Other strategies	Communicating (e.g., picture schedule, getting down to child’s level, and positive language) Transitions (e.g., lotion massage near bedtime) Organizing space (e.g., rotating toys and books, designated therapy and play spaces, bathtub as pool, and open yard)	Getting information (e.g., surfing the web, word of mouth, talking to neighbors, and attending support groups) Safety (e.g., park near carriage return, use a double cart, and dine out at buffet) Advocacy (e.g., prepare the speech and using disability discounts)

Note: ABA = applied behavior analysis.

Although most of the strategies reported were specific to the home or community setting, parents did describe six general strategies to promote participation in both the home and community. These general strategies were grouped into three categories, according to whether the strategy enabled the parent to (a) maintain an identity apart from being a parent, (b) negotiate parenting roles and responsibilities, and (c) effectively parent the child.

Linking participation and environment through strategies

In conversation, parents had difficulty reporting directly on how they perceived various factors to impact their child’s participation. However, when parents described strategy use, either in general or specific terms, they frequently made references to one or more factors as depicted in Table 2. The process of securing respite illustrates this finding because it was described by parents in both general and specific terms. As young children often participate in activities together with their caregivers, parents in this study described the importance of acquiring respite to enable them to participate with their young child. Parents described one form of respite as creating opportunities for couple time, such as by participating in date night, to maintain an identity apart from being a parent. When parents described general strategies for acquiring respite of this type, they made references to factors such as having supplies to have date nights at home and money to go on a date night out of the house, scheduling it in on a regular basis, and taking turns with each other or hiring professional support for respite. As Judy explains:

What most people don’t realize is that you’re homebound most of the time . . . so stupid little rituals we can afford, like we have Netflix and we always watch a movie on Monday . . . we sit outside on the deck and we’ll have a beer and we’ll light the tiki torches . . . to make you feel like you’re not always . . . always a parent.

Although Jill assumed the primary caregiving responsibilities in her household, “On the weekend actually . . . my husband’s pretty good. He’ll um let me sleep in . . . or he’ll take both boys just out in the backyard and do something.” Single parents in this study described similar need for respite but fewer strategies for securing time to be alone, with a friend, or with an extended family member.

When describing specific strategies to secure rest and respite, parents in this study also relied on resources aside from hired help. To use these strategies, parents repeatedly stressed the importance of having the needed supplies for respite, such as backyards, toys, and siblings to encourage activity before bedtime and, as Tamika points out, “Literally let them play until they’re tired because any energy they expend out there would be less energy that I have to work with at night.” Other factors included having space for cosleeping to enable the parent to sleep for longer stretches at night or cable television to occupy the child and afford the parent with uninterrupted time for housework or an opportunity to tune into a news program as a way of remaining connected “with the outside world.” In the community, securing respite at the gym or mall were commonly reported strategies in the absence of affordable, quality, professional, and social support. Many parents like Colleen were not living near extended supports and described the frustration of having enough money to afford a qualified babysitter when needing help:

When J. was little, I would have never left her with a high school kid, because I need someone more mature and more responsible because of her cognitive and motor problems . . . a lot of our life is about having to pay for help all the time. We can never stretch our dollar far enough for this help.

Even parents like Cameron could afford professional support for respite but still relied on creative hires and having the supplies and information to enable the hired help to plan a good day. She said, “I’ve got all the kid magazines and websites . . . We refer to her because she had a lot of what we didn’t have, she’s extremely creative, she’s an artist, and neither of us are particularly artsy.” In another case, Jessica described challenges when using extended family for respite:

My parents will babysit but . . . we can go to dinner at 4:00 as long as we are home by 9:00, and it’s like “don’t go far” and “you better be home” and so . . . we can’t go out with our friends and go and have any fun . . . what’s the point of it all I don’t know.

Parents repeatedly made reference to a host of factors that impact their selection and appraisal of current strategies for rest and respite.

This study finding is not unique to rest and respite. Parents also made explicit references to factors when describing specific strategies to manage behavior at home and in the community. Factors included scheduling (e.g., arriving early), supplies (e.g., using a backpack leash), and space constraints (e.g., having a break-out space or corner) to prevent deterioration of the child’s behavior during an excursion or outing or while attending a community-sponsored event. Parents in this study planned for a good day at home or in the community and relied on having the right supplies, supports, and timing. Jessica describes how she plans for her son’s haircut:

So the next time, the third attempt for a haircut, I had to bring the ABA therapist with us, he had to watch a Thomas video, it has to be at a time when there were no other children there, he ran around and got familiar with the place, was familiar with the woman, had to use the buzzers because . . . and the buzzers were really invasive for him . . . but she let him touch them, and she put them to her face so that he could see that he wasn’t gonna get cut, and the whole time I had a bag of sour patch kids and I was like feeding him sour patch kids through the whole thing . . . the big guns. Those are the big guns, you need them for particularly traumatic things.

Similar types of factors surfaced when parents described how they organized therapeutic play spaces at home. Parents often considered factors like professional advice, housing policies about adapting spaces, and supplies needed to renovate a space for the child.

Discussion

Thematic findings from this study suggest that parents face a highly complex task of promoting their infant or toddler’s participation across the various activities that comprise home and community life. In response to their varying expectations and their child’s strengths and needs as well as available resources, parents in this study demonstrated a remarkable ability to strategize and help their child meet expectations for participation. Results from this study provide new insights regarding the level of specificity by which parents establish expectations, identify appropriate resources, and apply strategies to promote their child’s participation. In this section, we relate these findings to the existing literature and discuss implications for research and practice.

Appraising Participation by Activity Setting and Goal

In response to our first research question, parents in this study defined what it meant for their children to participate in three ways that were applied differently based on where the activity took place and its intended goal. Attention to spatial qualities of the environment (i.e., home and community) and purposefulness (i.e., discretionary and nondiscretionary activities) is congruent with an operational definition of participation (Coster & Khetani, 2008). Settings have been commonly used to organize thinking about relevant dimensions of participation among preschool children with disabilities in a classroom setting (Odom & Bailey, 2001) and to develop measures of participation for school-aged children and youth in the home, school, and community environments (Bedell, 2004; Coster, Deeney, Haltiwanger, & Haley, 1998; King et al., 2004). However, study results suggest that parents of younger children have expectations that vary by more than the physical location. Parents in this study expect that how often their child will participate will vary by setting, whereas how involved their child is when participating will vary according to whether the activity is done to sustain a household (nondiscretionary) or for enjoyment and well-being (discretionary). For this reason, participation measures that have been developed for older children may not adequately capture all relevant dimensions along which participation varies for younger children. However, measures that have been developed for young children’s participation use semistructured interview rather than quantitative assessment, which limits their feasibility (Bricker, 1996; Wilson, Mott, & Batman, 2004). Study results provide greater specificity about the relevant dimensions to capture in a new measure of young children’s participation. For example, researchers may design a new measure and ask about how often a child participates in both home and community activities, but the response options might vary depending on the setting in which the activity takes place. Similarly, definitions of a child’s “helpfulness” and “interaction” when participating might need to differ on an assessment form depending on whether parents are being asked to appraise their child’s participation in a discretionary or nondiscretionary activity.

Linking Participation and Environment Through Strategy Use

It is well established that how often and how much a child participates is influenced by child, family, and environmental factors, such as the physical design and accessibility of settings, social attitudes, institutional policies, services, and resources (Law et al., 1999; Mihaylov, Jarvis, Colver, & Beresford, 2004). Recent research has begun to examine the extent to which these factors are linked to a child’s participation in setting and activity-specific ways (Bedell et al., 2011). To capture this link between participation and environment, researchers have examined parental perceptions of factors in their environment and how they influence the types of strategies they use to promote their child’s participation (Bedell, Cohn, & Dumas, 2004; Bedell et al., 2011). In this study, we applied a similar approach to examine how parents’ perceptions of factors in their environment impact their strategies for participating in specific home and community activities with their child.

In this study, we found further evidence of a potential link between young children’s participation and environment through strategy use as examined on an activity-by-activity basis. In response to our second research question, we found that parents in this study could identify various environmental factors that were relevant for their child’s participation in both the home and community setting. When parents in this study proceeded to describe their strategies to promote participation, they made clear and consistent reference to one or more of these factors that were being responded to or acted on to promote participation. Our results resemble thematic findings reported by Maul and Singer (2009) who examined specific strategies of parents raising children 3 to 8 years of age with developmental delays across a subset of parent-identified activity settings. These findings are also congruent with prior research suggesting that parents of children with disabilities are not different from other parents in what they want to do (Gallimore et al., 1993) but may need to develop strategies to respond to barriers in their environment that are specific to raising a child with a disability and can be perceived to threaten participation in home and community life (Keogh et al., 1998; Nelson, 2002). Additional research is needed to further examine the hypothesized relationship between participation and environment as mediated through strategy use.

Addressing Participation Needs of Immigrant Families: Implications for Research

Results from this study and prior research on parent strategies suggest to practitioners that taking the time to elicit information from families about their strategy use, activity by activity, should be helpful for generating concrete ideas for tailored interventions to promote participation. This type of engagement is also a positive and collaborative approach to working with families. There is a growing need to engage with immigrant and nonimmigrant families about their child’s participation as supported by evidence that nearly one in six young children below 6 years of age is growing up in an immigrant household in the United States (Capps, Fix, Ost, Reardon-Anderson, & Passel, 2004) and by the concurrent increase in representation of immigrant families within the Part C service system. Immigrant families like those interviewed in this study may be confronting additional child, family, and environmental constraints that may impact the child’s participation. No conclusive statements can be drawn from this study given the heterogeneity of this subsample with respect to ascribed ethnicity, language, timing and process of immigration, and relationship with host community. However, it is well established that cultural considerations are critical to the study of child development (Garcia-Coll & Marks, 2009). Farver and Lee-Shin (2000) have suggested that cultural effects are indeed variable within any single group, so that there may not be one normative belief system for each cultural community. Parental belief systems may also change over time according to how they see their child, themselves as parents, and the world around them (King et al., 2006). Parent expectations of how young children participate will likely vary and change over time as a function of variable and changing belief systems. Future research should examine the extent to which variability and change in participation is linked to age as compared with immigrant status.

Given the complexity of the topic, the heterogeneity and small size of the study sample, and the use of a single interview, broad generalizations cannot be made based on the findings. Service providers were primarily used as recruitment liaisons, and two thirds of the families had been receiving early intervention services since before the child’s first birthday. Hence, study findings may reflect the perspectives of those participants who have had longer and more positive experiences with Part C services and who have developed a strong working alliance with their service provider. However, study findings overlap with themes reported in the literature and suggest areas of specificity in how participation is represented to further inform our knowledge base on the topic. Future studies with more ethnically and linguistically diverse families and those residing in warmer climates who are receiving Part C services and those who are not receiving these services is needed to examine the strength of participation patterns reported here.

Conclusion

This study explored parent expectations, strategies, and perceived supports and challenges to young children’s participation in specific activities and settings of everyday life. Study findings contribute new insights about the specific conditions under which young children’s participation is expected to vary. Parents in this study described expectations that varied according to setting and activity type, factors perceived to impact participation in general and setting-specific ways, and general and activity-specific strategies used to promote participation. This information clarifies the important characteristics of participation in a way that (a) helps practitioners anticipate how parents might differ in terms of how they define and promote their young child’s participation, (b) encourages practitioners to seek out more detailed information from families about strategy use as a way of facilitating family-centered planning on this service-related outcome, and (c) provides critical insights about how to document the concept of participation for service planning, program evaluation, and/or outcomes research in the early intervention field.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was completed in partial fulfillment of requirements for the Doctor of Science degree in Rehabilitation Sciences at Boston University. We thank the families who participated in this study and the American Occupational Therapy Foundation (AOTF) and Boston University Women’s Guild (BUWG) for funding this study. Preliminary work for this study was completed with support from the ZERO TO THREE Leaders for the Twenty-First Century Program. We thank colleagues at the Massachusetts Department of Public Health, Tri-City Early Intervention, Penfield Children’s Center, and the ArtzCenter for recruitment support. We thank Rebecca Slavin, MS, for help with transcription and data analysis, and Gary Bedell, PhD, and Martha Cousins, MEd, whose involvement in a similar study informed the design of this study.

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