THE ADAPTATION of families to the needs involved in rearing a child with an intellectual and developmental disability (IDD) includes changes and challenges in their daily lives. As they construct their daily routine, families face new and often difficult situations, take risks, explore new possibilities, and look for potential solutions to the demands of their daily lives.
Historically, family adaptation has been analyzed from a reactive perspective, using a mental health model, which offers a vision of the family characterized by pathology and often poor adaptation to the new situation (Cunningham, 2000). In the 1980s, important changes in understanding family adaptation occurred as a result of both parents' and researchers' demanding a more realistic and positive vision of the situation (Ferguson, 2001). Indeed, parents respond to disability in different ways, and the lives of these families have been shaped by both positive and negative experiences as with any other family (Singer, Ethridge, & Adana, 2007; Trute, Hiebert-Murphy, & Levine, 2007). Consequently, “contemporary views of the impact of children's disability on their families emphasize variability, adaptation, and long-term patterns of resilience” (Risdal & Singer, 2004, p. 95).
Experts have reviewed the literature on outcomes for families adapting to children with IDD (Ferguson, 2001; Turnbull, Summers, Lee, & Kyzar, 2007; Weisner, Mathenson, Coots, & Bernheimer, 2005). Turnbull et al. (2007) identified four family outcomes: emotional well-being, adaptation, family functioning, and family quality of life. One of the most significant conclusions of this review was that much research in this field has predominantly been focused on the first three outcomes by measuring depression, stress, caregiver burden, pessimism, and adaptability/cohesion. For those authors, these studies highlighted the need to understand family adaptation, beyond lack of stress, in terms of family well-being, sustainability of routines, and improvement of family quality of life (Turnbull et al., 2007).
With respect to the sustainability of routines, based on an ecocultural approach, Gallimore, Bernheimer, and Weisner (1999) considered that knowing what families do in a crisis or how they handle the emotional cost of dealing with childhood disability is a necessary but insufficient indicator of their functioning. They argued that experts need to conceptualize and study how families construct and sustain unremarkable times—times of family life between episodes of crisis and problems, when there is an established routine, balance, homeostasis, and equilibrium. There is more to family life than crises that punctuate long passages of living; sustaining an established daily routine is an achievement worthy of respect and scientific inquiry.
Therefore, from an ecocultural perspective, sustainability is viewed as one of the most noteworthy family outcomes when referring to family adaptation (Singer, 2002; Weisner et al., 2005). Accordingly, the most important adaptation task that all families undertake is the construction and maintenance of a sustainable family daily routine (Gallimore, Weisner, Bernheimer, Guthrie, & Nihira, 1993; Gallimore, Weisner, Kaufman, & Bernheimer, 1989).
As shown in Figure 1, families construct their sustainable family routines based on what is important for them—their values, beliefs, and goals (i.e. cultural elements)—and on the opportunities and the constraints of their family's ecology (i.e., ecological elements). In other words, families construct their family routines according to their ecocultural niche. The sustainability of family routines should be analyzed in terms of (a) social ecological fit (parents have to balance their family ecology with available resources and limitations); (b) congruence and balance (parents have to assess the inevitably competing interests of family members); (c) meaning (parents try to organize their routine in a personally, culturally, and morally suitable way); and (d) stability/predictability (parents have to keep their family routine predictable; Weisner et al., 2005). Therefore, sustainable routines are posited to be promote families' well-being (Weisner, 2009). To maintain a sustainable family routine, families make accommodations. Accommodations are defined as the functional responses of families in their daily life to the condition of rearing a child with developmental delays (Keogh, Bernheimer, Gallimore, & Weisner, 1998).
Most accommodations emerge as part of the family's everyday life and include actions taken (e.g., trying to eat dinner together as a family) as well as actions not taken (e.g., the parents turn down jobs because the hours conflict with the child's therapy sessions). Accommodations are not assumed to be positive or negative in their effects on the family or the child. Every accommodation is presumed to have costs as well as benefits for each individual in the family and for the family as a whole. The “goodness” of accommodations depends on long-term outcome assessments for parents and siblings as well as for children with disabilities (Gallimore, Coots, Weisner, Garnier, & Guthrie, 1996).
Gallimore et al. (1996) and Weisner et al. (2005) conducted a longitudinal study with 102 Euro-American families who had a child with developmental delays. This investigation led the researchers to identify 10 “ecocultural dimensions” comprising the family ecocultural niche: family subsistence, services, home/neighborhood, domestic workload, childcare tasks, child playgroups, marital roles, social support, father's role, and parent information (Bernheimer & Keogh, 1995; Bernheimer & Weisner, 2007; Gallimore et al., 1993). In each of these 10 ecocultural dimensions, we can identify (a) ecological resources and constraints faced by the family (such as the parents' jobs, family income, available services, and formal and informal supports); (b) cultural and family goals, values, and beliefs (such as the parents' perceptions of their jobs, the importance of child inclusion, and their ideas on development); and (c) accommodations families can develop (such as impact on the parents' jobs, access to the services, marital relationships, and parents' roles). Therefore, these 10 ecocultural dimensions provide a framework for gathering comprehensive information about family life (Bernheimer & Keogh, 1995).
Research in this field has focused on elements that appear in these ecocultural dimensions, such as the family's financial situation (Carpenter & Campbell, 2008; Emerson, 2003; Sloper, 1999); the parents' jobs (Davies, 2007; Olsson & Hwang, 2003); disability-related services (Giné et al., 2011; Olsson & Hwang, 2003; Sloper, 1999); childcare tasks (Eisenhower, Baker, & Blancher, 2005; Raina et al., 2004); marital relationships (Risdal & Singer, 2004; Stoneman & Gavidia-Payne, 2006); informal supports, both emotional and instrumental (Kersh, Hedvat, Hauser-Cram, & Warfield, 2006; Park & Chung, 2014); and formal support (see Canary, 2008; Kyzar, Turnbull, Summers, & Gómez, 2012). Research on these variables has helped explain family adaptation. Nevertheless, these studies have also often focused on the impact of the disability on these elements rather than on understanding how all of these variables converge in the construction of sustainable, everyday family routines unique to each family.
Another relevant aspect for understanding the family's accommodations is “hassle,” that is, the impact of the child's problems on daily routines. In their longitudinal study, Gallimore et al. (1993) found that accommodations result from cultural and family values but they are also related to how much hassle the child's needs cause for the family. These researchers also found that the intensity of accommodations was related to child hassle not to child test scores (Bernheimer & Weisner, 2007). “Hassle” was a term frequently used by parents in the interviews, and it was used to organize many parents' stories about their daily routine and activities and about the types and intensity of their accommodations. Other authors have analyzed this impact (Davis & Gavidia-Payne, 2009; Gerstein, Crinc, Blancher, & Baker, 2009). Davis and Gavidia-Payne (2009), in their study on the quality of life in families with children with developmental delays, demonstrated that lower scores in family quality of life (emotional well-being and disability-related support) were associated with a higher perception of hassle. Descriptions of hassle help explain how and why daily routines are constructed, so research documenting the role of hassle on sustainable family routines is important.
The aim of this study was, therefore, to understand how Catalan families adapt their family routines to rearing a 3- to 5-year-old child with IDD in order to promote a sustainable family routine. Specifically, our objectives were (a) to identify the accommodations that parents make or do not make because of the child's IDD and the most significant elements of their ecocultural niche and (b) to analyze the sustainability of their family routines as an outcome of this family adaptation.
In Catalonia (an autonomous community, like a state, in Spain), early intervention (EI) centers serve children from 0 to 6 years old with or at risk for developmental delays. They also serve their families and the community (Early Intervention Group-GAT, 2000). With the Catalan government responsible, this service is provided at no charge to families throughout all regions of Catalonia by public social services. In most of the EI centers, practice has been focused on (a) a child-centered approach, (b) deficits, (c) treatment that aims to correct or rehabilitate the disorder, and (d) an expert model (Giné, Balcells-Balcells, & Mas, 2010). Each child attends one or two sessions per week in the center. How the EI professionals work with the parents varies from center to center. Although in recent years, several EI centers in Spain have shifted toward a more family-centered model, in general, parents wait outside the treatment room, while professionals work with their child. Sometimes, though, they are invited to observe how the EI professionals work with the child. Each EI center attends to families that live in a particular geographic sector. Early intervention centers in towns of between 5,000 and 50,000 inhabitants serve families living in the same town or in a nearby village, so some families need transportation and spend time going to the EI center.
To recruit the families, the study was presented to the staff of seven EI centers from different areas of Catalonia, who were asked to identify families likely to be interested in participating in the study. The main inclusion criterion was that they should have a child of 3–5 years of age with IDD. Another inclusion criterion was having a mixture of families that lived in the same town as the EI center and families that lived outside the town. As we mentioned earlier, families that live in other towns need transportation, spend time going to the EI center, and perhaps need more support. Having families living in different contexts allowed us to have more representative families served in the EI centers.
After the first author explained the study to the families, they all agreed to participate. A total of 18 families with a preschooler with IDD enrolled in seven EI centers from Catalonia participated in the study. One of these EI centers had six families, another had five families, two had two families, and three had one family. Also, out of these 18 families, 10 lived in the same city–town where the EI center was located, and eight did not.
The two parents or legal guardians were always invited to participate in the study, although data collection was conducted with the child's main caregiver. Eighteen mothers (main caregiver) and four fathers participated. The mothers' ages ranged between 27 and 42 years (M = 33.94). Of the 18 mothers, seven had full-time jobs, two had part-time jobs, and nine were unemployed. All fathers had full-time jobs. Four mothers had completed primary education, seven mothers and one father had completed secondary education, six mothers and three fathers had university education, and one mother marked “other.” Seven families reported problems making ends meet, five had problems from time to time, four reported having an adequate income, and two reported having a good financial situation. As for the children with IDD, 12 were boys (six girls), and their ages ranged from 36 to 64 months (M = 44.4, SD = 9.42). All children had IDD, with six having an autism spectrum disorder, six having no specified etiology, one having Down syndrome, and five having other diagnoses.
To describe the children, we assessed their development, using the Spanish adaptation of the Inventory for Client and Agency Planning (ICAP; Montero, 1999). This instrument assesses adaptive behavior in people with IDD. It comprises 77 skills reported by the parents or the main caregiver, using a 0–3 rating scale. It measures the extent to which the person with IDD can carry out each skill independently (0 = never or rarely and 3 = always). The areas assessed were social and communicative skills (19 items, α = .94; reliability data from the authors), personal life (21 items, α = .94), community life (19 items, α = .95), and motor skills (18 items, α = .97). The mean chronological age of the children was 44.4 months, as Table 1 shows, and the children scored below their chronological age in each of the four areas. The area with the lowest score was social and communicative (26.8 months).
The Ecocultural Family Interview (EFI; Weisner, Bernheimer, & Coots, 1997), adapted to the Catalan population by Mas and Giné (2012), is a semistructured interview, through which parents are encouraged to “tell their story about their child and about how they were or were not adapting their family routine, and in response to what or whom” (Weisner et al., 2005, p. 51). This instrument allowed us to explore the first objective about accommodations and ecological and cultural elements of the ecocultural niche as well as the second objective about the sustainability of the family daily routines. The EFI was composed of two components. First, we gathered different types of information regarding the family (e.g., family composition, parents' jobs, services, and support networks). This information was documented in several different ways, such as rating-scale answers, multiple-choice answers, and open-ended opinions by parents. Second, we used a semistructured interview or guided conversation in which the parents told their story, along with the description of two full days in the family's life (a working day and a weekend day). Although the interview followed the parents' lead, the interviewer had guidelines and prompts that guaranteed that the 10 ecocultural dimensions would be addressed.
To organize the researchers' interpretations of the parents' reports, a coding system was used. The codebook helped us codify the information collected in the interview with quantitative and qualitative data. The intensity of the different accommodations and whether the different ecocultural elements were described as a resource or a limitation were rated on a 0–8 scale: 0–2 indicated that there was little or no evidence (L), 3–5 indicated moderate evidence (M), and 6–8 indicated high evidence (H). The reliability of coding was established by two raters, who independently scored the same interview, following the criteria in the codebook. They scored each item and recorded the evidence justifying the score. The codebook of the Catalan version of the EFI showed agreement of 85% κ (Cohen, 1960). More information about the transcultural adaptation process is available in the study by Mas and Giné (2012).
Cuestionario de Ideas Sobre el Desarrollo y la Educación de los Hijos (Questionnaire of Ideas About Child Development and Education; Triana & Rodrigo, 1989) identified parents' implicit theories concerning their child's development and rearing. It allowed us to understand how the parents' implicit theories were related to their accommodation processes and their roles as parents, in accord with the first objective. It consisted of 21 statements in which the parents reported, using a 0–8 Likert scale, the extent to which each statement reflected their beliefs or personal experiences (0 = totally disagree and 8 = totally agree). The implicit theories assessed were nurturer (eight items, α = .87; reliability data from the authors), innate (five items, α = .85), environmentalist (six items, α = .86), and constructivist (four items, α = .83).
From the parent interview, the researchers analyzed the hassle—the impact the child's problems had on parents' daily life—relative to five dimensions: health, mobility, communication and language, behavior, and social and emotional skills. A 0–8 rating scale was used, organized according to three main categories: 0–2 low (L), 3–5 moderate (M), and 6–8 high (H). The reliability of coding was established by two raters who independently scored the same interview and identified the evidence justifying the score. The hassle measure showed perfect interrater agreement (i.e., κ = 1.0; Cohen, 1960). As Table 2 shows, behavior problems (n = 16) and communication–language (n = 14) were the dimensions that had the biggest impact on family daily life.
A first meeting with all families was conducted to explain the study and their participation. Once they agreed to participate, they signed the informed-consent form and were provided with the two questionnaires. After they had completed and returned the questionnaires, the researchers analyzed the data and prepared the interview, which was conducted at the time and place that best suited the daily routine of the family. The interview, which lasted 3.5 hr, was audio recorded and transcribed. A copy was provided to the parents so that they could confirm the content; this was a form of member check (Lincoln & Guba, 1990). Qualitative and a quantitative analyses were conducted. The qualitative analysis of the transcripts was performed with the Dedoose software (formerly EthnoNotes; Lieber, Weisner, & Presley, 2003). This analysis enabled us to identify new elements that the parents identified as important, apart from the categories previously defined by the ecocultural theory. The quantitative analysis consisted of scores for the intensity of the accommodations developed and the valence of the ecocultural elements following the protocol of the EFI codebook. We subsequently developed a holistic and exhaustive description of every family. Once every family's data had been analyzed, we performed a comparative analysis of the 18 cases.
To determine findings from grounded theory, we used the headline method (McWilliam, 2014). First, the first author read all the narrative data and proposed “headlines,” thus called because they stated directional hypotheses, rather than simple themes, which are common in qualitative analyses. Whereas themes tend to describe content areas, hypotheses announce findings. Second, the first author and an EI expert who was not on the research team used “memoing” to agree on the wording of the initial headline (i.e., hypothesis; Birks, Chapman, & Francis, 2008). Third, the first author constructed confirming and disconfirming tables to determine the strength of evidence for each hypothesis (Creswell & Miller, 2000). Fourth, on the basis of those tables, the first author revised the headlines and memoed the outside expert to reach a final version. If the revised hypothesis was substantially different from the previous one, new confirming and disconfirming tables were created. This process resulted in a final set of findings that could be confirmed by the data and that were understandable to an expert outside the research team.
RESULTS AND DISCUSSION
As mentioned earlier, all families build and maintain a sustainable family life, according to their values and goals (i.e., cultural elements) and depending on the resources and limitations (i.e., ecological elements) of their ecocultural niche. To maintain a sustainable family routine, families make accommodations (see Figure 1). According to this framework, our objectives were (a) to identify the accommodations that parents make or do not make and the most significant elements of their ecocultural niche and (b) to analyze the sustainability of their daily routines, as an outcome of family adaptation. In accordance with these two objectives, our findings are presented in two sections.
First, we describe key findings in relation to the different accommodations the parents made because of their child's disability as well as most significant elements of their ecocultural niche. These key findings were related to the family's economic/financial situation, the parents' jobs, satisfaction with services, scheduling, caring of the child, emotional support, and information.
Parents manage their resources (income, informal and formal support, and others) effectively to accommodate to the needs of the child and the family. Certainly, experts have noted that taking care of a child with a disability incurs extra expenses (Carpenter & Campbell, 2008; Emerson, 2003; Sloper, 1999), which plays a role in families' adaptations. In research studies, family subsistence has often been assessed on the basis of family income. In this study, we looked for how parents to manage their resources (income but also informal and formal supports) to meet the needs of the child and their family and also how they felt about their situation. We understand that the capacity to manage resources becomes an important element of the family ecology of their niche and led us to understand how families construct their daily routines.
“Managing resources” and the satisfaction of the parents with their economic/financial situation is what in the EFI is called resilience of the subsistence base (Weisner et al., 1997). The level of the resilience was rated as low, moderate, or high, depending on the capacity of the family to manage the resources and parents' satisfaction.
Six families showed high resilience and nine showed moderate resilience of their subsistence base. One example of families having this capacity at a moderate level was a mother who was responsible for cleaning the building where she lived, and when she needed a babysitter, her neighbors did it. This low-income mother was able to find a grant for her son without disabilities who needed services (speech therapy and tutoring) from a private agency. She made things happen for her family, who had little money, by using her informal and formal supports, and she felt satisfied with their situation.
The families in this study could meet the needs of their child in part because in Catalonia, the EI centers, schools, and hospitals are public. Most of the parents (n = 14) received the services their child needed through the public network, which is, therefore, an ecological resource of their ecocultural niche (Weisner, 1984).
Not all families, however, had this moderate level of resilience. Three families had low resilience. One family, before their child was born, had a good financial situation, but they had to buy a new apartment because of their child's physical problems. This family had no help from extended family or friends and had to pay for almost all of the services they required, such as a babysitter and school transport. The parents lived with constant worry about their economic situation.
Results from this study suggest that the capacity to manage resources becomes an important element of the family ecology and reflects families' strengths. This capacity to manage resources, however, has not been used much in research, which tends to focus on SES or family income.
Parents make accommodations in their jobs to meet the needs of the child. Throughout the interviews, the parents' jobs emerged as an important topic, both in terms of accommodation and as ecological/cultural elements of their niche. The impact of the child's disability on the parents' jobs was greater and more common in mothers than in fathers. In particular, for eight mothers, the impact was high, for three mothers, it was moderate, and for two, it was low. For four fathers, the disability had a high impact but for five fathers, the impact was low. The effect of the disability (i.e., accommodation) was fewer working hours, changes in work shifts, failure to search for work, or even not quitting, which is consistent with previous research (Freedman, Litchfield, & Erickson, 1995; Olsson & Hwang, 2003). Therefore, the parents' jobs, and especially the mothers', might pose ecological limitations that result in accommodations.
The lack of flexibility of the parents' jobs and the need to devote time to the children's needs (particularly to participate in different services and to organize the child's schedule) were the most frequent reasons for these accommodations and coincided with the reasons obtained in previous research (Gallimore et al., 1993; Giné et al., 2011; Olsson & Hwang, 2003). After these accommodations, the current situation of 15 mothers enabled them to have high flexibility, which was an important ecological resource for them. The flexibility of fathers' jobs was between moderate (n = 6) and high (n = 9) for most fathers. For example, some fathers could arrive at work later if they had to take their children to the doctor and then make up the hours later. In this sense, the flexibility of most fathers' job was an ecological resource.
On the contrary, some parents did make decisions about whether to work on the basis of having children, not necessarily only because of a disability in the child. For six mothers, their beliefs about their children's development and education emerged as one of the most important reasons for their working situation. Among these six mothers, four accommodated their job to the child's needs. In this respect, Gallimore et al. (1993) determined that accommodations were more closely associated with the values and goals about the mothers' job than with income and the family's financial situation. But the other two mothers did not make any accommodations. In other words, mothers' beliefs about working while having young children appeared to be a more salient reason for employment decisions than the child's disability. One of these two mothers explained the reasons that led her to leave her job with the following words:
I have always said that I would always have two or three (children) close together, I would be there for them, and I would see they were educated. And when I was sure they were developed .... I think that they are developed at five or six years old ..., then I would start to work. (Case 11)
Also, seven out of the nine working mothers had a positive vision of their job. For them, their job was a resource and highlighted their need to work. They talked about the positive aspects of their jobs, such as contact with other people, things to think about other than children, and conversations with adults. A mother explained the need to work in the following words:
[The first year, when we knew there was a problem with our baby], it was exhausting, it was brutal .... Now I am working four hours, forty minutes (daily) and I need this time to be alone—to have something else on my mind. (Case 06)
All nine mothers expressed the need for and importance of balancing family and work life, and five mothers referred to the satisfaction and personal autonomy that work provided. These results are in line with previous research showing the link between employment and the mothers' personal well-being (Davies, 2007; Hautamäki, 1997).
These findings show that, if we focus on the impact of the child's disability on parents' jobs, it is important to know why parents made a specific decision about their job and their satisfaction with their job (Bristol, 1984, cited in Beresford, 1994). Parents' beliefs about working when they have young children, flexibility of their jobs, and the need to devote time to children's needs are some of the important reasons explaining parents' decisions. Flexibility and time are related to attending EI services, organizing the child's schedule, and consequently organizing care of the child.
Families were satisfied with services, which led to certain accommodations. Research shows that families are generally satisfied with EI professionals and services (Bailey et al., 2005; Epley, Summers, & Turnbull, 2011; Giné, Gràcia, Vilaseca, & García-Díez, 2006). It also indicates, however, that these positive results are given especially on questionnaires (Giné et al., 2011; Olsson & Hwang, 2003). When parents are asked in an interview, less positive results are found (McWilliam et al., 1995). These less positive results suggest problems with professionals' performance or with families' accommodations to professionals.
Accordingly, according to questionnaire scores in this study, families' satisfaction with the services and the professionals was high, with an average rating of 3.41 of 4. Early intervention professionals (M = 3.8, SD = 0.54) received the highest score compared with teachers (M = 3.5, SD = 0.85), the educational system (M = 3.3, SD = 0.9), medical professionals (M = 3.2, SD = 0.87), and the medical system (M = 3.0, SD = 1.02).
When we asked parents about these scores, however, we found that (a) six families could not evaluate the specialist that dealt with their child at school because they did not know him or her. Parents accommodated to this situation, asking the EI professional all their questions about the school specialist's job. (b) Some families reported that some of their needs (as a family) were not fully met, such as emotional support, information, or support on how to cope with some situations at home. As a result, some parents did not look for emotional support from professionals and, instead, focused on their partner or extended family. (c) Families were not satisfied with the little amount of information that doctors gave them or doctors' attitude (i.e., a lack of confidence in or empathy for parents). (d) Families were not satisfied with the medical system because of the minimal coordination among the different units in the same hospital, the difficulty in arranging schedules among visits, medical tests, and having specialists who could be found only in certain hospitals. Some accommodations parents made were related to their expectations. They did not expect empathy from doctors; they expected them only to be good medical experts. These medical aspects represent the reasons why 11 families made moderate and high accommodations concerning their contact with medical professionals, regardless of the severity of their children's health problems. For example, a mother explained that they had a different medical appointment each month (for the next 6 months), in the same hospital, which was an hour and a half away from where they lived. This case alerts us that, family accommodation was needed because of their perception that visiting specialists because of the child's disability was required. The accommodation involved reorganizing the child and family schedule, changing job duties, and spending time and energy. The intensity of this accommodation would have been attenuated with better coordination of health services. Other accommodations were related to information and support, discussed next.
These results lead us to rethink both how we ask parents about their satisfaction and what we ask them. Questionnaires are useful but insufficient for gathering families' perceptions, if we want a complete and holistic vision of the families. The combination of qualitative and quantitative data would be necessary.
Caring for the child: Behavior and communication problems mean childcare is difficult, and different targets for accommodation (e.g., parenting, marital relationships, friends, etc.) were required. An important issue that the interviews pointed out was the complexity of caring for the child. The 18 families reported that daily care of the child was highly (n = 8) and moderately (n = 10) difficult. Their stories indicated that the difficulty in caring for the child was related to the impact of the child's problems on families' daily lives, also known as the “hassle.” As Table 2 shows in our study, the dimensions on which the majority of children received the highest rating of hassle (moderate to high) were behavior problems (e.g., tantrum and defiant behavior, n = 16) and difficulties in communication (e.g., lack of verbal language, difficulty in oral expression, n = 15). A mother expressed this hassle:
We have to figure out when he means yes and no! We haven't done it yet. I don't know why there isn't a way. A smile or a laugh could be a yes or a no. How can we do it? I am very worried. I need my son to be able to explain to me what he wants and how he wants it. (Case 17)
Another mother said that, because of her daughter's tantrums, she could not leave her with a babysitter or with the grandparents, and, therefore, the parents were exhausted. These two examples show how parents have to accommodate to the child's needs. For the first mother, the situation had an impact on her parenting: She accommodated to her child's needs by using a more visual language to communicate with him and changing her thoughts about communication: “There are different ways to communicate with others” (Case 17).
For the second mother, the behavior problems had an impact on different dimensions of family life, such as the marital relationship, friends, and parenting self-perception. Some of the accommodations families made, when their children had challenging behavior included (a) trying to spend more time as a couple, maybe 1 day, an afternoon, or a lunch each month (marital relationship); (b) avoiding any social gatherings with a lot of friends and, instead, seeking other get-togethers with fewer people and where the child felt comfortable (friends); and (c) seeking the technical support of EI professionals on “how to face some situations” or “thinking that tomorrow is another day” (parenting).
Scheduling: Having time, job flexibility, and support allowed the parents to make small accommodations in scheduling their parenting duties. Nine families scheduled different activities and services for their child (e.g., going to different services every week, going to school, transportation) fairly easily. For four families, the scheduling, however, was moderately complex. An example of fairly easy scheduling of parenting duties was described by a family in which the mother worked at night and, consequently, could be with the children during the morning, taking them to school, sleeping in the morning, and taking the child to the EI center in the afternoon twice a week. In the evening, when she went to work, her husband stayed with the children. The grandmother was also available if necessary.
In general, most mothers (n = 16) had much time to devote to their child. As shown earlier, when we analyzed parents' jobs, 15 mothers had much flexibility, which was an important ecological resource for them.
The fathers' situation was different, with 12 having moderate time for their child. For example, one father spent three afternoons a week and the weekend with his child, whereas another took the children to school every morning. He came back late at night but also spent the weekend with them. As presented earlier, the flexibility of their jobs was between moderate (n = 6) and high (n = 9) for most fathers.
Another element linked to this result was the support that the mothers (as first caregivers) received from the fathers when caring for children. Nine fathers were a high source of support and six were a low source of support. Seven mothers also reported receiving high support from other individuals who did not live at home, usually grandmothers. The quantity and quality of support the main caregivers received was an important ecological element (Heller, Hsieh, & Rowitz, 2000; Olsson & Hwang, 2003).
Emotional support: Partner and extended family are the most important emotional supports for the primary caregiver. Informal supports are a key element for family adaptation (Kersh et al., 2006; Olsson & Hwang, 2003; Povee, Roberts, Bourke, & Leonard, 2012; Saloviita Itälinna, & Leinonen, 2003). We found that, for most mothers, as primary caregivers, their partner (n = 13), followed by the extended family (n = 10), were the most important source of support. One mother explained the help she received from her husband this way:
He has always been there when I needed him. Evidently, mothers always carry more of the burden in this sense, but he has always been there for the important things! I think there is a lot of mutual understanding on this topic. (Case 09)
According to the mothers in our study, the partners were those who could best understand what the mothers were going through, the complexity and variety of feelings they experienced, and their children's everyday functioning. This was one of the reasons friends were not a source of emotional support. Parents felt that when they tried to explain their feelings and worries to friends, they did not understand their situation. Consequently, parents adapted to this by seeking the emotional support of their partners. Another reason parents sought the support of partners was the lack of emotional support they found from some professionals, as shown by the results about the parents' satisfaction with services.
We also found, however, that fathers could be a source of stress, such as when they did not become involved in caregiving tasks such as bath time, giving medication, and putting the child to bed. For one mother, the child's schedule was very important, and she complained that, when she arrived home late, she would find the father and the child playing or watching cartoons, and the child would hardly ever have been bathed, nor would dinner have been prepared. This mother changed, that is, accommodated her expectations about the father's duties, and started to assess in a positive way other things that the dad did well.
The extended family was reported as an important emotional support too, particularly grandparents; some problems arose with the extended family, however, including their lack of acceptance of the child's disability or problems, their attempt to minimize the child's real and current problems, and their lack of understanding of the parents' actions, as Jones and Passey (2004) found. Parents accommodated to this in different ways: framing grandparents' “denial” as wanting to help and avoiding arguing with them about these topics.
Information: Parents made accommodations to obtain and understand information from professionals. The quantity and the quality of information the parents received have become important moderators in family adaptation because they can be either a stressor for the family or an element promoting the family's adaptation to the needs of their child (Guralnick, 2005; Rous, Hallam, Harbin, McCormick, & Jung, 2007). Lack of information and the access to information frequently become a difficult need to meet (Gallimore et al., 1996; Jones & Passey, 2004; Pain, 1999; Singer, 2002). Consequently, parents had to make accommodations if they did not have the information they wanted.
Fourteen families said that they had enough information regarding their child. One mother said, “I finally believe that we have succeeded. Yes, yes...” (Case 04). And the remaining four families said that they had a moderate amount of information. When we asked parents how much information the different agents (professionals, family, extended family, or friends) provided them with, on a scale from 1 to 4, parents' scores showed that professionals (M = 3.29, SD = 1.04), followed by partners (M = 2.88, SD = 1.21), were the most important sources of information.
The availability of information did not mean that parents did not have to look for it. When they first learned that something was wrong with their child, families felt a lack of information about their child's disability, what the words meant, and what services they needed. One mother said,
The first year was very tough, because it was a process of adapting to everything that was happening. We were constantly discovering things. It was like entering an unknown world ... and you are constantly seeking people who can help, who can give you clues on how to move forward, how you can help her .... It was very complicated. (Case 06)
Therefore, parents made accommodations by asking friends, friends of their extended family, searching the Internet, and connecting with different associations. Other families accommodated to this situation by changing the way they interacted with professionals, asking them everything they wanted to know, being persistent, and learning the “language” of the doctors. We found that six families devoted high levels of effort to obtaining information. The kind of information parents were looking for was related to, among other things, the development and the diagnosis of their child, how to cope with the child's different behaviors, services, and what the professionals were doing with their child. These are the same areas of information discussed in other scholarly writings (McWilliam & Scott, 2001): about resources including services, about child development, about the child's disability, and interventions they could do with their children. In sum, as Epley et al. (2011) state, many families reported needing information about their child's disability and services but they simultaneously reported that the EI service met this need quite well. Nevertheless, the quest for information was a recurring topic for these families and one of their major concerns. When they had information, it was because they had tried hard to find it.
This section addresses the second objective of this study and focuses on the results about the sustainability of family routines, understanding sustainability as an outcome of family adaptation. We analyzed the extent to which (a) the family's daily routines were important and consistent with their values and beliefs (i.e., meaning), (b) routines matched the family's resources and their community (i.e., socioecological fit), and (c) the routines met the needs of all the family members (i.e., congruence and balance).
Sustainable: Daily routines were important for most families (meaning) and they had the resources to maintain those routines (social-ecological fit), but these daily routines did not meet the individual needs of all family members (congruence and balance). For 12 of the families, daily routines were important because they matched their priorities and values. One mother talked about her satisfaction with her current situation in this way:
Yes, yes ... it is extremely clear for me, it is essential for me. It is what I want .... I think I have a great combination at the moment ... it fulfills me, sincerely .... It isn't ideal for many people, but for me and in my case it works. (Case 07)
Indicating the importance of daily routines for families was the fact that families used them as contexts to live out their values or goals, as seen in the following examples. First, the father's job was a resource that fulfilled most families' personal and professional expectations. Second, it was important to mothers to have time to spend with their child in the course of their daily lives.
If we focus on the social–ecological fit of the daily routines, we find that 12 families matched the resources available to the family or in their environments. As mentioned earlier, the government covered basic needs, so most families were able to manage their resources to meet the needs of the child. Informal help was also available for them, most commonly from partners and extended family members. They also had formal support from professionals.
Regarding the congruence and the balance of family routines, we found that eight families had daily routines meeting the individual needs of the family members, but, for nine families, individual needs—usually the mother's—were only moderately met.
Regardless of the congruence, family routines were significant. It was important for the mothers to be able to devote time and effort to their children and family life. Similarly, Green (2007) said that mothers held positive views of their children and found many rewards in raising them, and their perceived burden was more affected by sociostructural constraints, such as financial and time constraints, rather than the burden of caring for the child. Many families were able to sustain their daily routines, which is consistent with findings from similar research (Cho, Singer, & Brenner, 2001; Gallimore et al., 1993; Povee et al., 2012; Weisner et al., 2005), showing that they were adapting their family life to the needs of their child with IDD in a positive way.
Limitations of this study include the fact that we focused on only the main caregiver's story. Other family members might have yielded further information. With regard to the sample, all families participating in the study consisted of two parents, so generalization to families with other structures (e.g., single-parent families) might be attenuated. Furthermore, these families were from Catalonia, so generalization to families from other places is unknown. Moreover, regarding the recruitment of the sample, a nesting effect (i.e., some families in the study were served by the same professionals) might have been a limitation, especially with two EI centers having five or more families. Finally, the addition of other data collection methods, such as observation rather than solely interviews and questionnaires generating self-reports, might yield different information.
This study has produced eight findings that enabled us to learn from the lives of these 18 families and to see how the different elements in ecocultural theory are framed (see Figure 1). The first seven findings are related to the accommodations parents made (e.g., changes in the parents' jobs, parenting, marital relationships, emotional support, information) and some important cultural and ecological elements of the ecocultural family niche that play an important role in the accommodation process. Some important cultural elements were related to the vision parents had about their jobs or their current situation, mothers' beliefs about their children's development, and the importance of having time for their child and their family. Some of the ecological elements that were important resources for the families were the flexibility of the parents' jobs or the material, emotional, and informational support from formal and informal supports. Moreover, these elements appeared together through the stories of the parents. For example, when the parents explained their job situation, they spoke not only about the impact of the child (accommodation) but also about their opinion about their job situation (cultural), and they also showed how their jobs were a resource for them or not (ecological).
The eighth finding showed how the accommodations described earlier allowed parents to build and maintain a sustainable family routine. These eight findings together also indicated that the daily routine of each family has to be sustainable according to their particular ecocultural niche.
These eight findings are related to each another and are also linked to four important elements of the EI field. First, EI is basically a parenting program, and the findings about the difficulties of caring for the child with challenging behavior and scheduling parenting duties are both parenting issues. Parenting a child with challenging behavior is hard, and scheduling parent duties shows the resilience of some families. Second, two findings are related to the families' satisfaction: most parents saying that they had enough information and some being satisfied with the professionals and the services. Moreover, these two findings have shown that parents have some need for information and attention from their services, so parents have had to accommodate. Third, material support linked the finding that the child's disability had an impact on the parents' jobs, the organization of the schedule, and the finding that parents manage their resources effectively. Material support has been identified as one of the key types of support necessary in EI. The three key supports are emotional support, material support, and informational support (Guralnick, 2001; McWilliam & Scott, 2001). Support-based EI is, therefore, linked to the finding about emotional support. Fourth and finally, the interventions children receive from their natural caregivers, such as parents, occur in daily routines. Routines were important but did not always meet all the family members' needs. An implication for service delivery is to focus more on these routines so that they are successful for families (McWilliam, 2010). We agree with Singer (2002): “Perhaps one day we will come to see family support providers as experts in helping families design sustainable accommodations within the parameters of their own cultural norms and values” (p. 153).
Bailey D. B., Hebbeler K., Spiker D., Scarborough A., Mallik S., Nelson L. (2005). 36-month outcomes for families
of children with disabilities participating in early intervention. Pediatrics, 116 1346–1352.
Beresford B. (1994). Resources and strategies: How parents cope with the care of a disabled child. Journal of Child Psychology and Psychiatry, 35, 171–209.
Bernheimer L. P., Keogh B. K. (1995). Weaving interventions into the fabric of everyday life an approach to family assessment. Topics in Early Childhood Special Education, 15, 415–433.
Bernheimer L., Weisner T. (2007). “Let Me Just Tell You What I Do All Day...” The family story at the center of intervention research and practice. Infants & Young Children, 20, 192–20.
Birks M., Chapman Y., Francis K. (2008). Memoing in qualitative research probing data and processes. Journal of Research in Nursing, 13, 68–75.
Bristol M. (1987). Mothers of children with autism or communication disorders: successful adaptation and the double ABCX model. Journal of Autism and Developmental Disorders, 17(4), 469–486.
Canary H. E. (2008). Creating supportive connections: A decade of research on support for families
of children with disabilities. Health Communication, 23, 413–426. doi:10.1080/10410230802342085
Carpenter B., Campbell L. (2008). The changing landscape of early childhood intervention in the United Kingdom: Strategy, policy, and practice. Infants & Young Children, 21, 142–148.
Cho S., Singer G. H., Brenner M. (2001). Adaptation and accommodation
to young children with disabilities: a comparison of Korean and Korean-American Families
. Topics in Early Childhood Special Education, 20, 236–249.
Cohen J. A. (1960). A coefficient of agreement for nominal scales. Education Psychology Measurement, 20, 37–46.
Creswell J. W., Miller D. L. (2000). Determining validity in qualitative inquiry. Theory Into Practice, 39, 124–130.
Cunningham C. C. (2000). Familias con niños con Síndrome de Down [Families
with children with Down syndrome]. In Verdugo M. A. (Ed.), Familias y discapacidad intelectual [Families
and Intelectual Disability] (pp. 41–71). Madrid, Spain: Colección Feaps.
Davies J. (2007). First impressions: emotional and practical support for families
of a young child with a learning disability (pp. 97–106). InCarpenter B., Egerton J. (Ed.), Early Childhood Intervention. International Perspectives, National Initiatives and Regional Practice. Great Britain: West Midlands SEN Regional Partnership.
Davis K., Gavidia-Payne S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families
of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2), 153–162.
Eisenhower A. S., Baker B. L., Blacher J. (2005). Preschool children with intellectual disability: Syndrome specificity, behavior problems and maternal well-belling. Journal on Intellectually Disability Research, 49(9), 657–671.
Emerson E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. Journal on Intellectual Disability Research, 47(4), 385–399.
Epley P., Summers J. A., Turnbull A. P. (2011). Family outcomes of early intervention: Families
' perceptions of need, services, and outcomes. Journal of Early Intervention, 33(3), 201–211. doi:10.1177/1053815111425929
Ferguson P. (2001). Mapping the family. Disability studies and the exploration of parental response to disability. InGary A., Albrecht L., Seelman C. D., Bury M. (Eds.), Handbook of disability studies (pp. 373–395). Thousand Oaks, CA: Sage Publications.
Freedman R., Litchfield L., Erickson M. (1995). Balancing work and family: Perspective of parents of children with developmental disabilities. Families
in Society, 78(8), 507–514.
Gallimore R., Bernheimer L., Weisner T. (1999). Family life is more than managing crisis: Broadening the agenda of research on families
adaptation to childhood disabilities. InGallimore R., Bernheimer L., MacMillan D., Speece D., Vaughn S. (Eds.), Developmental perspectives on children with high-incidence disabilities (pp. 55–80). Mahwah, NJ: LEA.
Gallimore R., Coots J., Weisner T., Garnier H., Guthrie D. (1996). Family responses to children with early developmental delays II: Accommodation
intensity and activity in early and middle childhood. American Journal on Mental Retardation, 101(3), 215–232.
Gallimore R., Weisner T., Bernheimer L., Guthrie D., Nihira K. (1993). Family responses to young children with developmental delays: Accommodation
activity in ecological and cultural context. American Journal on Mental Retardation, 98(2), 185–206.
Gallimore R., Weisner T. S., Kaufman S., Bernheimer L. P. (1989). The social construction of ecocultural niches: Family accommodation
of developmentally delayed children. American Journal on Mental Retardation, 94, 216–230.
GAT. (2000). Libro blanco de la atención temprana [White Paper of Early Intervention]. Madrid, Spain: Ministerio de Trabajo y Asuntos Sociales.
Gerstein E. D., Crnic K., Blacher J., Baker B. L. (2009). Resilience and the course of daily parenting stress in families
of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53(12), 981–997.
Giné C., Balcells-Balcells A., Mas J. M. (2010). Early intervention in Catalonia. In M. Pretis (Ed.), Early childhood intervention across Europe. Towards standards, shared resources and national challenges (pp. 35–49). Ankara, Turkey: Maya Akademi Yayın Dağıtım Eğitim Danışmanlık.
Giné C., Balcells-Balcells A., Simó-Pinatella D., Font J., Mas J. M., Carbó M. (2011). Necesidades de apoyo de las familias de personas con discpacidad intelectual en Cataluña [Support needs of families
of people with intellectual disabilities in Catalonia]. Siglo Cero, 42(2), 31–49.
Giné C., Gràcia M., Vilaseca R., García-Díez M. (2006). Repensar la atención precoz [Rethinking early intervention]. Infancia y Aprendizaje, 29(3), 297–313.
Green S. E. (2007). “We're tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150–163.
Guralnick M. J. (2001). A developmental systems model for early intervention. Infants & Young Children, 14(2), 1–18.
Guralnick M. J. (2005). Early intervention for children with intellectual disabilities: Current knowledge and future prospects. Journal of Applied Research in Intellectual Disabilities, 18, 313–324.
Hautamäki A. (1997). Mothers—stress, stressors and strains: Outcomes of a cross Nordic study. InCarñenter A. B. (Ed.), Families
in context: Emerging trends in early interventions and family support (pp. 31–49). London: Davis Fulton.
Heller T., Hsieh K., Rowitz L. (2000). Grandparents as supports to mothers of persons with intellectual disability. Journal of Gerontological Social Work, 33, 23–33.
Jones J., Passey J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behavior problems. Journal on Developmental Disabilities, 11(1), 31–46.
Keogh B., Bernheimer L., Gallimore R., Weisner T. (1998). Child and family outcomes over time: A longitudinal perspective on development delays. InLewis M., Feiring C. (Eds.), Families
, risk and competence (pp. 269–287). New Jersey: Laurence Erlbaum Associates.
Kersh J., Hedvat T. T., Hauser-Cram P., Warfield M. E. (2006). The contribution of marital quality to the wellbeing of parents of children with developmental disabilities. Journal on Intellectual Disabilities Research, 50(12), 883–893.
Kyzar K. B., Turnbull A. P., Summers J. A., Gómez V. A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research and Practice for Persons With Severe Disabilities, 37(1), 31–44.
Lieber E., Weisner T. S., Presley M. (2003). EthnoNotes: An internet-based field note management tool. Field Methods, 15, 405–425.
Lincoln Y. S., Guba E. G. (1990). Judging the quality of case study reports. International Journal of Qualitative Studies in Education, 3(1), 53–59.
Mas J. M., Giné C. (2012). Adaptación transcultural de la ecocultural family interview a las familias con un hijo con discapacidad intelectual de Cataluña [Cross-cultural adaptation of the ecocultural family interview for families
with a child with intellectual disability in Catalonia]. Siglo Cero, 43(2), 26–45.
McWilliam R. A. (2010). Working With Families
of Young Children With Special Needs. New York, London: Guilford Press.
McWilliam R. A., Lang L., Vandiviere P., Angell R., Collins L., Underdown G. (1995). Satisfaction and struggles family perceptions of early intervention services. Journal of Early Intervention, 19, 24–42.
McWilliam R. A., Scott S. (2001). A support approach to early intervention: A three-part framework. Infants & Young Children, 13(4), 55–66.
Montero D. (1999). Evaluación de la conducta adaptativa en personas con discapacidades. Adaptación y validación del ICAP
[Assessment of adaptative behaviour in people with disability. adaptation and validation
] (3rd ed.). Bilbao, Spain: Mensajero.
Olsson M. B., Hwang P. C. (2003). Influence of macrostructure of society on the life situation of families
with a child with intellectual disability: Sweden as an example. Journal on Intellectual Disability Research, 47(4/5), 328–341.
Pain H. (1999). Coping with a child with a disabilities from the parent's perspective: the function of information. Child, Care, Health and Development, 25(4), 299–313.
Park H. J., Chung G. H. (2014). A multifaceted model of changes and adaptation among Korean mothers of children with disabilities. Journal of Child and Family Studies, 24(4), 915–929. doi:10.1007/s10826-014-9902-y
Povee K., Roberts L., Bourke J., Leonard H. (2012). Family functioning in families
with a child with Down syndrome: A mixed methods approach. Journal of Intellectual Disability Research, 56(10), 961–973. doi:10.1111/j.1365-2788.2012.01561.x
Raina P., O'Donnell M., Schwellnus H., Rosenbaum P., King G., Brehaunt J., Wood E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 14(1). doi:10.1186/1471-2431-4-1.
Risdal D., Singer G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons With Severe Disabilities, 29(2), 95–103.
Rous B., Hallam R., Harbin G., McCormick K., Jung L. (2007). The Transition Process for Young Children With Disabilities: A Conceptual Framework. Infants and Young Children 20(2), 135–148.
Saloviita T., Itälinna M., Leinonen E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. Journal on Intellectual Disability Research, 47(4/5), 300–312.
Singer G. H. S. (2002). Suggestion for a pragmatic program of research on families
and disabilities. Journal of Special Education, 36(3), 150–156. doi:10.1177/00224669020360030501
Singer G. H. S., Ethridge B. L., Aldana S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357–369.
Sloper P. (1999). Models of services support for parents of disabled children. What do we know? What do we need to know? Child: Care, Health and Development, 25(2), 85–99.
Stoneman Z., Gavidia-Payne S. (2006). Marital adjustment in families
of young children with disabilities: Association with daily hassle and problem solving coping. American Journal of Mental Retardation, 111(1), 1–14.
Turnbull A., Summers J. A., Lee S., Kathleen K. (2007). Conceptualitzation and measurement of family outcomes associated with families
of individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 346–356.
Triana B., Rodrigo M. J. (1989). Cuestionario de teorías implícitas sobre el desarrollo y la educación de los hijos y las hijas [Questionnaire of ideas about child development and education
]. Canarias, España: Departamento de Psicología Evolutiva y de la Educación. Universidad de La Laguna. Unpublished data.
Trute B., Hiebert-Murphy D., Levine K. (2007). Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual & Developmental Disability, 32(1), 1–9.
Weisner T. S. (1984). Ecocultural niches of middle childhood: A cross-cultural perspective. In Collins W. A. (Coord.), Development during middle childhood. The years from six to twelve (pp. 335–369). Washington, DC: The National Academies Press.
Weisner T. S. (2009). Well being and sustainability
of the daily routine of life. In Mathews G., Izquierdo C. (Eds.), Pursuits of happiness: Well-being in anthropological perspective (228–247). New York, Oxford: Berghahn Books.
Weisner T., Bernheimer C., Coots J. (1997). The ecocultural family interview manual. Los Angeles, CA: UCLA Center for Culture and Health.
Weisner T., Mathenson C., Coots J., Bernheimer C. (2005). Sustainability
of daily routines
as a family outcome. In Maynard A., Martini M. (Eds.), Learning in cultural context: Family, peers and school. New York, NY: Kluwer/Plenum.