A total of 18 interviews and two focus groups were conducted with six Spanish-speaking and 17 English-speaking caregivers of 24 children aged 2 weeks to 4.5 years. Just over half of the children were boys (58%). Participants were referred to the study through seven agencies, resided in 14 zip codes throughout Hillsborough County (including urban, suburban, and rural communities), and represented a diverse range of demographics (Table 1). Compared with the overall county population at the time of the study, this sample was racially representative (82% White, 13% Black, and 4% Asian vs. county population 71% White, 17% Black, 3% Asian, and 5% other; U.S. Department of Commerce, 2010); on the basis of ethnicity, a higher percentage of participants in this study identified as Hispanic (61% vs. county population 23%). Study participants were also non-English-speaking or spoke English as a second language (42% vs. 25% county estimate) and had lower income (44% under 25,000 annual household income vs. 14% in county under below poverty level). In addition, a higher percentage of the participants were older (58% aged 35 years or older), married (74%), and had higher education levels (85% high school diploma, 63% college degree). Half of the participants (52%) had two or more other children, 22% had one other child, and 17% were first-time parents. Parents described in detail observations that first prompted developmental concerns, their decision-making processes in assessing whether and when to seek help, and interpersonal influences on this process.
About half of participants reported behavior (54%), social (50%), or speech concerns (54%); more than a third had academic (38%), receptive language (42%), or self-help concerns (33%); and roughly 15% reported fine motor (17%) or gross motor (13%) concerns on the PEDS questionnaire. Parents of children 2 years or younger reported more concerns in multiple areas, whereas parents of children older than 2 years reported more specific concerns, particularly in expressive language and social-behavioral development. A number of discrepancies between written and reported concerns occurred. Interestingly, three participants responded “no” to “any concern” on the PEDS questionnaire yet described their concerns in the interview. One mother who had an infant with multiple congenital conditions, including physical and heart defects and a feeding tube, reported “a little” concern on the questionnaire. According to the PEDS scoring criteria, questionnaire responses regarding 24 of the participants' children indicated that eight should be referred for evaluation, 11 monitored, and five counseled and referred for parent training or behavioral intervention as needed. Half of the participants' children were not enrolled in any services, and just eight (30%) of 24 had enrolled in public intervention and/or private therapy. In addition, 16 (67%) parents reported that their child was screened (12 via questionnaire/checklist, and four screened only verbally) and 16 (67%) also reported that their child was referred to a program. However, there was not a significant correlation between screening and referral (Pearson correlation coefficient, r(21) = −.31, p = .14). Only about a third of those who were referred had been screened and reported that screening from a number of sources (e.g., social worker, preschool teacher, pediatrician, home visitor, developmental specialist; Table 1).
Knowledge of child development
Participants reported varying levels of knowledge of child development. Some had professional experience in the field of child development, others had prior parenting experience or took care of younger siblings, and several lamented that they really did not know what to expect in terms of child development. For example, one mother asked the interviewer, “I don't know if there's like a certain age, but what age should your child be talking? ... I know they say like, you know, words, but when should they be having conversations and talking clear?” In particular, those who had children with behavioral concerns, and first-time parents were unsure about what was considered age-appropriate development, “When is it extreme? When do you think it's extreme?”
Most parents attributed their knowledge of child development to previous parenting experience,
I have three kids and I knew that by age four all my kids spoke the same, in the same manner—babyish—all my kids spoke the same way so there wasn't any concern. In the moment that they start pre-K, within maybe a month or so, they came on but my son never happened, I never saw the jump from 3 to 4 ... no talking.
Of 23 KIDI questionnaires, 21 could be scored and analyzed (two respondents filled in the questionnaire incorrectly—one chose the same answer selection for every question, and the other entered two responses for each question). Knowledge of child development as measured on the KIDI questionnaire was low: mean = 61%, range 32%–91% correct; average percent correct on the infant questionnaire 50% (n = 7), pre-K questionnaire 65% (n = 14). The two parents with highest KIDI scores had worked in a child-related field. The KIDI score was significantly correlated with family income and maternal race/ethnicity but not with parent age or parenting experience (number of other children; Table 2). Parents also reported that they participate in community programs (playgroups, library events), peruse the Internet, and refer to books to learn about child development.
Parent recognition of developmental delays and appraisal of developmental differences
Eight parents could recall a specific trigger (cue to action) that alerted them to a potential problem. Three parents were alerted to the problem by a professional, and the others remembered being triggered by a sudden change in their child or a difference in behavior or development compared with siblings or peers or across settings, Some parents described behaviors that were notably unusual or extreme,
She started sticking her finger in her own mouth to throw up and she threw up in my husband's face.... This was recently.
When he started to walk I looked at him like a normal child, but he starting doing circles until dizzy, but when time passed by I thought “this is not normal that he did so many circles” and he grabbed a toy and would not let the toy ... and circles, circles, circles ... he kept the toy all day.... When he started his one year old ... when he learned to walk, he preferred to walk, walk, walk than play in the playground.
Parents also seemed to go through a period of deciding whether the developmental difference or delay was of concern warranting help-seeking or whether the problem would improve on its own. Parents also attempted to understand the cause of the developmental or behavioral difference and to determine the extent of their concern by observing the child compared with other children (peers, siblings, or cousins), across settings (playgroups, preschool, home, park), and in relation to the child's individual characteristics (such as the child's temperament, age, previous health problems, and the type of delay).
His two cousins that live out of town, when they come in ... she was like “I don't understand what he's saying.” You know, it's like “Oh my God!” ... they don't understand him!
Well, I just kind of figured by like 2½, 3, he would be speaking, ‘cause I remember my daughter—we used to do flashcard stuff with her.... He's not even speaking and we can't teach him anything and have him expect to respond if he doesn't know how to respond.
Parents who had children with multiple concerns prioritized physical concerns (feeding, bowed legs, vision) and behavioral concerns over other developmental concerns. Poor health appeared to increase sensitization to developmental concerns. “She was always been my concern because she's the sickest one I think of all the three,” as did a family history of developmental or psychosocial problems.
I was thinking that ... maybe it's ‘cause he's, you know, he's young. Maybe it's because he's a boy. Maybe it's because the pacifier ... I was thinking of the ears [infections], I couldn't think of ... really because I didn't have a speech problem when I was little. His father didn't ... the person in my family was ... is my cousin....
I'm thinking, because that was one of my cousins! Because he had, he had bad ear, he had to get tubes in his ears, so did my mother when she was little. So I'm thinking, Oh my God! Maybe that's what he needs!
Social support: Appraisal support
Parents also relied on others to give them feedback regarding whether the delay was of concern. The main sources of appraisal support were spouse or partner, the parent's mother or other relatives, and friends or other parents. Some of the children's older siblings noticed developmental differences as well. Most mothers reported that their husbands were not worried, or less worried about the concerns, and less eager to pursue services, and those who did not discourage help-seeking deferred to the mother to follow up on her concerns. “Because my husband didn't interest that much [sic]. He said ‘okay don't worry he will speak one day.’ But, um, I think he's very low in like compared with others he's behind.”
Parents also often conferred with their own parents or other relatives, with mixed reports of how helpful this was. Well, like my sister is incredibly helpful even though she has ... her own developmental stuff with her daughter, she's just knowledgeable. My mom is very sweet but ... she's like “I just don't know honey” or “I don't remember.”
Friends and other parents seemed to be the most consistent informal source of appraisal support to validate a parent's concern; one parent was encouraged to act early. “In my case, a lady friend of mine tells me ‘small children, small problems.’” Formal sources of appraisal support included pediatricians, teachers, and developmental specialists, social workers, home visitors, and a life coach. However, pediatricians almost always deferred to the parent or encouraged the parent to “give it time” or hold off until a future checkup.
...and then I was like “something is wrong.” Well, the doctor told me I had to wait until he was [age] 2½ because “babies learn different,” 2½ was ... when we could go get him evaluated. And I was like “2½? That's a long time!” ...he probably had a vocabulary of ten words, if that.
...they said work with him with his letters and sounds. And that if I didn't feel comfortable when he turned four, that I'm more than welcome to bring him back due to the fact that he should be able to speak by the time he's four. Kids are slower at learning than others.
...and I'm like “what is your opinion on his behavior” and he's [pediatrician] like “I only see him thirty minutes, once a year, unless he's sick. I don't know his behavior at home.” But [he] refused to do all the tests at the doctor's office, like his eye test, his drawing ... and they just wrote it off as “oh, he's having a bad day, it's okay.”
Primary health care providers
The role of primary health care providers (e.g., pediatricians) is critical in helping or hindering early recognition and referral to services (Weitzman & Wegner, 2015). All participants in the study had a regular pediatrician for their child. Parents described their relationship with the pediatrician and their perception of quality of care in great detail, and several had switched doctors at least once. A discussion among a group of Spanish-speaking parents highlighted the need for, and lack of, family-centered care; several of these participants felt that they had limited time or invitation to talk with their child's pediatrician openly about their concerns.
Well child visits provide brief windows of opportunity to address concerns and conduct developmental screening, and a couple of participants did follow a regular screening schedule with their child's doctor to monitor the concern over time. However, this screening must be followed by appropriate referral when indicated and it was particularly worrisome that pediatricians did not seem to share the parents' sense of urgency; several parents reported that they were told to wait until the next checkup, as much as a year later. Often, the onus was put on the parent to find and pursue help if he or she was worried or referral was provided only after the parent brought up the concerns several times. On the contrary, parents must be willing to discuss developmental concerns with the pediatrician; for many parents, the pediatrician was the first go-to person for questions, but others were reluctant to bring up concerns. Two parents said that they felt more comfortable talking with the pediatrician about concerns perceived as medical versus developmental or behavioral.
It was hypothesized that parents first recognize developmental differences and then engage in a decision-making process concerning whether and when to pursue assessment or intervention services. It was also hypothesized that factors and processes within the HBM and the influence of Social Support Theory (appraisal, emotional, instrumental, and informational) impact parents' decisions and actions.
Some background factors (e.g., experience, knowledge, education, age) may impact parent recognition and responses to delays; in this study, parents completed a demographic questionnaire and were asked directly about their knowledge of child development. In addition, participants described their processes of recognition and decision making related to responses. Parents reported that their ability to monitor development and detect delays comes primarily from past parenting experience, from their own research through the Internet or participation in community programs, and for a few parents, from professional experience.
The impact of knowledge of child development on recognition of developmental delays has yet to be established in the literature. In this study, measured knowledge of development (average 61%) was considerably lower than other studies that found mean scores of 79%–87% among groups including college students, mothers of low- or middle-class SES, and fathers (MacPhee, 1981). As the concerns of participants in this study were corroborated by reports of referral and enrollment in services, parents may have used nonspecific or subtle cues rather than specific measurable knowledge of milestones.
Studies have shown that parents can be accurate identifiers of developmental delays in their children regardless of education, income, or parenting experience; specificity is high (developmental concerns are usually warranted; Glascoe, 1997), but sensitivity is low when it comes to detecting developmental concerns, particularly for cognition problems, global delay, and behavioral versus language or motor problems (Chung et al., 2011). In this study, we found that parents clearly engaged in a sophisticated process of observing their children over time and across settings, and compared with peers or to siblings when they were of the same age. In addition, parents considered the child's temperament, health status, and environment as part of the appraisal process. Often there was a triggering event for noticing delays. In assessing whether the delay warrants formal intervention, parents evaluated the severity of the problem based on the type and length of delay and cultural expectations related to the child's age and gender. To some extent, susceptibility plays a role as parents report delays in conjunction with other or past health problems as well as the family history of a condition.
Parents rarely relied solely on their own judgment. Participants often consulted with their spouse or partner first and also discussed concerns with family and friends. In addition, parents consulted with their child's pediatrician or other professionals (teachers, home visitors, developmental specialists). Unfortunately, responses from these various sources were inconsistent. It appears that parents had to consult with a number of individuals to find validation for their concerns, and they often had to persevere in seeking answers in the face of disagreement from their social or professional supports. The reported rates of screening and referral by pediatricians are consistent with what have been found in the research; roughly half of pediatricians do not conduct developmental screening, and approximately 75% do not use standardized assessments (Bethell, Reuland, Schor, Abrahms, & Halfon, 2011; Halfon, Regalado, & Sareen, 2004; Pinto-Martin, Dunkle, Earls, Fliedner, & Landes, 2005; Sand et al., 2005).
The reduced likelihood of receiving developmental screening or elicitation of concerns among parents who are Black or Hispanic, particularly non-English-speaking, and of lower income (Guerrero, Rodriguez, & Flores, 2011) was also reflected among participants. Only about half of participants in this study reported that their pediatrician or another developmental specialist conducted some type of screening (verbal or using a questionnaire). Many of the parents relied on their pediatrician for guidance when developmental concerns arose; yet, most did not receive screening or referral, and many were postponed for months until the next well child visit. Some parents were even reluctant to discuss developmental issues with their pediatrician; two parents brought up medical concerns but not developmental ones. Those who did were as often as not told to wait until the next checkup to see how the child was doing, which has also been cited in past studies (Daniel, Prue, Taylor, Thomas, & Scales, 2009; Seligman & Darling, 2007). These findings call for further study and analysis into factors that increase a pediatrician's likelihood for raising, responding to, evaluating, and referring for developmental concerns expressed by parents and caregivers.
Strengths and limitations
The goal of this study was to obtain the perspectives of parents on recognition and appraisal of developmental concerns. Most of the study participants provided enlightening information on the decision-making process, and those accessing services could clearly report on their process of recognition and response to developmental concerns. Purposive, convenience sampling, although not generalizable, is a viable approach to recruiting participants from specific subgroups within the population who are willing to share their perspectives and experiences. The diverse sample of parents (by race/ethnicity, primary language, income, education, and geography) offers a variety of perspectives not always presented in other studies. The diversity among participants by demographics and by where they were in the timeline from recognition to response was further diversified in the age, health status, and developmental issues among the children. Nearly half of the participants had low or modest family income (<$25,000 per year), the remainder of the participants made $50,000 or more per year, and two thirds of participants had some college education. Thus, the results of the study may be more reflective of the experience of families with higher SES.
In addition, the community-based settings, option of individual interviews, presence of diverse and bilingual materials, and community partner recruiters helped raise the comfort level of participants in discussing sensitive topics, including stigma and cultural differences associated with developmental concerns. The two focus groups were held with homogeneous groups by primary language, income, and race/ethnicity. Although every effort was made to ensure that participants felt comfortable talking about their issues and concerns, and the role that their race, ethnicity, and other individual characteristics as well as close personal relationships played in their experiences, it is possible that some participants may not have fully shared their concerns and challenges.
Data analysis in this project incorporated valid standardized measures in the questionnaires (PEDS and KIDI), and reliability was increased through the use of a focus group and interview guide and a theory-based coding strategy. Because of the small sample size, generalizability is limited for the preliminary results generated from quantitative measures used in this study. Analysis was iterative and recursive and included reliability checks at all stages. However, there are some measurement concerns. First, there were discrepancies between what parents reported on the PEDS questionnaire and what they described in the interviews, and whether the parent reported the concern as “a lot” or “a little” is subjective and context-dependent. One parent's concerns about the child's speech and cognitive development were overshadowed by her concerns about the child's feeding problems, allergies, and subsequent underweight condition. Several parents seemed ambivalent—Two indicated that they were not concerned about their child's development but did attend the local developmental screening and describe some developmental issues. In addition, the KIDI scores may not capture the knowledge of developmental milestones necessary for recognition of developmental delays or the social and behavioral expectations, and the Spanish version of the KIDI has not been validated. Examination of potential KIDI subscales grouped into 4 domains—Norms & Milestones, Principles, Parenting, and Health & Safety—resulted in low correlations between results by domain, and a factor analysis also showed poor internal consistency by subscale, so the entire scale was completed by participants (MacPhee, 1981). Finally, although parent report of referral was recorded from transcripts, the developmental or referral status of the child was not directly assessed or verified in this study. Direct child assessment would have strengthened the validity and triangulation of findings. However, the main goal of this primarily qualitative study was to understand parents' perceptions and decisions rather than to influence them by providing screening or referral services.
The study identified prompts for parental recognition of developmental delays and described the process of appraising developmental differences to determine whether and when to seek help. The findings revealed this to be a subject worthy of further research. First, parents or providers of children younger than 3 years could benefit from evidence-based knowledge and information about typical and atypical child development. This lack of knowledge may, in part, account for the delay in raising and identifying developmental concerns. There is also a need for better measures of parental and caregiver knowledge of child development for the purpose of developmental monitoring, focused on major and more subtle milestones at shorter and earlier intervals.
In addition, more research into cultural differences in appraisal of developmental differences for young boys and girls throughout infancy and early childhood could yield important insights to facilitate early recognition and response to concerns that require intervention. We must routinely incorporate important insights from fathers, friends, and extended family members in helping parents assess concerns that warrant decision making. Finally, the process of identifying and appraising developmental concerns rests primarily on the shoulders of parents. Efforts to provide developmental information, including identifying indicators of when to recommend early intervention, will be critical to ensure that children with delays receive adequate care, including screening and referral for services, well before they enter school.
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Keywords:Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved
child behavior; child development; parents