Working with Families

“Why do I need to read a chapter on families I was raised in a family, I know all about families…”

Parents

Regardless of the type of family structure (e.g., birth, adoptive, partner, blended, or foster), caregiving adults sharing parental duties need to coordinate their efforts. These adults form the parent subsystem of the family, which can be a positive force and can contribute to the child’s ability to face developmental challenges. Researchers have found a number of different solutions in how parents distribute childcare, realizing that the different forms may all be adaptive if they enable the system to operate and meet family functions.^64,176 Studies have found that when a child has a disability, additional time for caregiving co-occupations is required in the mother–child subsystem.^29,30 The type and severity of disability the child will affect the amount of time required; for example, Crowe found that mothers of children with multiple disabilities spent at least 1 hour more per day on child-related activities compared with mothers of children with Down syndrome.²⁹ Disabilities that seem to create more stress and caregiving effort for the family include autism, severe and multiple disabilities, behavior disorders, and medical problems that require frequent hospitalization and in-home medical care.^23,54,134

Researchers have reported that mothers experience stress from the increased workload of caring for a child with disabilities.^54,120,149 In addition, mothers may experience more stress than their husbands because they are typically the primary parent working with the intervention team and, as a result, face greater demands on their time and communication skills.^90,93 Mothers often become the conduit for communication, responsible for transferring information and expectations between clinic and family. Therefore, because mothers find themselves caught between the perspectives of both the professionals and family members, the professional must be especially sensitive to the needs of mothers.^{30,93,157,170}

Some researchers have found that fathers can be more at risk for stress than mothers because they may feel isolated and helpless compared with the mother, who is more involved. Young and Roopnarine found that fathers spend about one-third the time caring for their children that mothers do.¹⁷⁹ Also, fathers may lack social supports compared with their spouses. Scholars have come to recognize the multidimensional process influencing what fathers do and why they do it.¹²⁶ They have also noted that fathers are more sensitive than mothers to the influence of the ecology of the family and the attitude of others. Other studies have found that mothers and fathers report similar levels of stress related to a child with disabilities.^76,115 Although stress levels were similar,⁷⁶ mothers attended 80% of the child’s intervention sessions compared with fathers, who attended 33%. The problem that arises from fathers’ inability to attend therapy is that information is often conveyed via the mother. Therapists should identify and use more direct methods of communicating with the father to ensure that information is transmitted accurately and to unburden the mother of the responsibility of transmitting information (Figure 5-3).

A child with disabilities can also affect the relationship between husband and wife. Although there is evidence that a child with disabilities can stress the marital relationship and decrease marital satisfaction, some parents have reported that their marriage was strengthened.¹³⁴ Differences in marital satisfaction between families of children with disabilities and those of typically developing children tend to be minimal.²⁰ Stress in dealing with the child may bring parents together for problem solving, and they may rely on each other for emotional support and coping. A strong relationship between husband and wife seems to buffer parenting stress. Britner et al. found that mothers who reported high levels of marital satisfaction also reported less parental distress and found their supports and interventions to be more helpful.²⁰

Siblings

As was suggested in the discussion of the system perspective, family members reciprocally influence one another in a dynamic way. Having a brother or sister with special needs changes the experiences of other children growing up in that family (Figure 5-4). Williams et al. investigated how having a sibling with special needs influences the typically developing brother or sister.¹⁷⁸ Using a method that allowed them to track direct and indirect effects (structural equation model), they investigated factors that might influence behavioral problems or the self-esteem of children who had a sibling with either a chronic illness (e.g., cancer, diabetes, or cystic fibrosis) or a developmental disability (e.g., autism, cerebral palsy). These workers considered factors that might influence the typical child’s experiences, such as how much the child understood about the disease, the sibling and his or her attitude, and social support. They also asked the mother about the mood and emotional closeness of the family (family cohesion). The researchers reported that the family’s socioeconomic status (SES) and cohesion and the siblings’ understanding of the disease were related to whether the typically developing sibling had behavioral problems. They also found that when the siblings felt supported, their behavior, mood, and self-esteem were more positive than when they felt unsupported.

Siblings are an important source of support to each other throughout life. In general, the relationships between children with disabilities and their siblings are strong and positive (Figure 5-5).¹⁵⁴ However, the research findings are varied across types of disabilities, sibling place in the family (older or younger), and sibling genders. Conflict among siblings may be more prevalent when a child has a disability such as hyperactivity or behavioral problems. Conflict tends to be less prevalent when a child has Down syndrome or mental retardation.^61,81,154

Often the roles of siblings are asymmetric, with the typically developing child dominating the child with the disability. Siblings without disability generally engage the child with a disability in play activities they can participate in, such as rough-and-tumble play rather than symbolic play. Siblings may be asked to take on caregiving roles, and assuming caregiving roles can have both positive and negative effects.¹⁵⁴ Siblings learn to relate and interact in the context of a family. Positive and solid marital systems seem to promote more positive sibling relationships, and marital stress has a deleterious effect on sibling relationships. Rivers and Stoneman studied the effects of marital stress and coping on sibling relationships when one child had autism.¹³⁴ Using multiple self-report measures of siblings and parents, they found that when marital stress is greater, the sibling relationship is more negative. This study confirmed the importance of examining sibling relationships in the context of the family, recognizing that all family subsystems affect each other.

As occupational therapists promote engagement in a full range of activities as a way of helping a child participate in family life, the inclusion of siblings is an important step in occupation-centered practice. Peer support groups for the typically developing siblings can also be occupation centered. Therapists can develop a recreational program for brothers and sisters of children with whom they work so that the siblings can meet one another and realize that their family is not the only one that faces challenging behaviors. These groups generally participate in structured activities and have open-ended discussions about what it means to have siblings with disabilities. One formalized support group for siblings is Sibshops, a recreational program that addresses needs and concerns through group activities.¹¹⁰ Sibshops’ primary goals for brothers and sisters of children with special needs are to meet their peers, discuss common joys and concerns, learn how others handle common experiences, and learn more about their siblings with special needs. In addition, parents and professionals are given the opportunity to learn more about the experiences of these typical siblings. When possible, siblings should be involved in occupational therapy sessions. They are likely to be the best playmates and can often elicit maximum effort from their brother or sister. In addition, sibling involvement gives the therapeutic activity additional meaning (play), and siblings can act as models for teaching new skills and providing needed support in a natural context.⁸²

Extended Family

In the extended family, the experience of having a child with special needs depends on the meaning family members bring to their relationship with the child. For some grandparents, grandchildren represent a link to the future and an opportunity for vicarious achievement. Researchers find that when children have disabilities, grandparents express both positive and negative feelings and go through a series of adjustments similar to those of the parents.^98,137 Many of the negative feelings, such as anger and confusion, appear to decrease with time. However, some never completely disappear. Positive feelings, such as acceptance and a sense of usefulness, increase over time. A grandparent’s educational level and sense of closeness to the child are positively associated with greater involvement with the child. Factors such as the grandparent’s age and health and the distance the grandparent lives from the child do not appear to influence involvement (Figure 5-6). Grandparents learn information about their grandchild’s condition primarily through the child’s parents. However, some seek information from other sources, such as support groups for grandparents of special-needs children. Margetts et al. found that grandparents of children with autism spectrum disorder felt strongly about the caring and support they provided for both their children and grandchildren. These researchers suggested that for professionals to be truly family centered, they need to ask whether the parents want to include the grandparents in the initial assessment of the child.

Patterson, Garwick, Bennett, and Blum interviewed parents of children with chronic conditions about the behavior of extended family members.¹³⁰ Family members, such as grandparents, uncles, and aunts of the child, were especially important to fathers and mothers for emotional and practical assistance. When extended family members were not supportive, parents expressed frustration and hurt over their lack of contact. In addition, parents recalled examples of times family members made insensitive comments about the child, ignored the child, or did not want to talk about the child’s disability. Parents of children with behavioral problems reported that extended family members tended to blame the child’s actions on the parents’ inability to discipline correctly.¹⁶¹ Families may be reluctant to ask relatives for assistance, wishing instead that they might volunteer.⁴⁷ With the consent of the parents, occupational therapists can encourage extended family members to become more involved by offering to share information with them and inviting them to therapy sessions. In this way, therapists can help families build on important social and emotional resources.

Early Childhood

Identifying a child as being at risk for health or developmental problems is usually a complicated process. Unless the child is born with medical problems, or with congenital problems in a body structure, or has features that suggest a syndrome, many children are not diagnosed until months, and sometimes years, later. Families that describe their experiences in raising a child with a disability frequently recall their journey by looking back to a period when “something was not right.”⁴⁰ Families of children with pervasive developmental delays recall a sense that they had to search for a diagnosis with repeated testing and visits to several clinics or evaluation centers. Even parents of a child with an unusual physical complaint, such as joint pain that only occurs at night, might have to persevere in finding the cause when professionals initially determine that the child is only seeking attention. After receiving a diagnosis and ending a period of uncertainty, families hope for a period of stability, but as one educated father commented, “No amount of professional or personal preparation trains you for the reality of chronic illness” (p. 243).⁶³

Parents’ requests for information generally include questions regarding day-to-day childcare, medication management, insurance issues, and support systems available.⁶⁵

Parents whose first child has special needs do not have the same experiences to draw on as those of families with older children.⁴⁷ Parents of young children may ask questions such as: “Do you think he can go into a regular classroom” and “Do you think she will be able to live on her own some day” Thoughtful responses to these questions recognize the parents’ need for optimism and hope. However, the responses must be honest and realistic. Even therapists with years of experience and extensive knowledge about disability and development cannot make definitive statements about the future. Long-range predictions about when the child will achieve a certain milestone or level of independence are always speculative. However, parents feel frustrated when they are told that the future cannot be predicted. Lawlor and Mattingly found that families want to be exposed to anticipatory planning.⁹⁰ Parents want to understand that they have reason to expect their child, despite disabilities, will have a place in society and an opportunity to engage in socially valued occupations during adulthood. Therapists can help parents understand the range of possibilities by telling them about the continuum of services for older children and young adults in the community. Talking with parents of older children with a similar condition or hearing the therapist’s story of a child with the same characteristics provides some insight into the future.^42,177 Even without knowing the child’s developmental course, parents start to develop an understanding that services are in place, and they begin to create new stories about their child’s future.

Given information about the system, their rights, and the resources available to them in their communities, parents can solve problems and independently access needed services. The caregiving routines of parents whose young child has a disability are not particularly different from those of all parents of young children. At this time in the child’s life, the parent’s work consists of managing the child’s play environment and introducing new, developmentally appropriate objects and materials. The parent ensures safety and may adjust or arrange the play environment so that the infant can access objects of interest. Feeding, diapering, bathing, and daily care are also natural parenting activities at this time. Only when infants and young children have serious medical conditions or behavioral problems are daily occupations significantly altered.

When children are medically unstable but still at home, a family may have home-based nursing for extended periods (i.e., months to several years). Murphy described the stress created by the constant presence of nurses and professional care providers in the home.¹¹³ Role ambiguity often results when parents feel that they must take on unpaid nursing work and nurses take on parenting roles. Parents also report stress from a lack of privacy and the continual feeling that they are “on duty.” Parents of medically fragile children must make tremendous accommodations, which should elicit high levels of sensitivity and responsiveness from professionals. For example, when parents have a medically unstable infant and around-the-clock, in-home nursing care, services such as respite become a priority.

School Age

When a child enters school, all families are excited about the new opportunities for learning and the child’s new demonstration of independence. However, school entry is not always a positive event for families of children with disabilities. Families that experienced early intervention services may be disappointed to find fewer family services and less family support offered by the school. Typically, parents are not encouraged to attend classes or school-based therapy sessions. Many parents view the transition to school as an opportunity to be less involved and a sign of their child’s maturation. To ease the transition from home to school, the parents of children with special needs should learn about the school’s programs, schedules, rules, and policies (Figure 5-7).

For children with mild learning disabilities, entry into school may be the first time that the gap between a child’s performance and teachers’ expectations for his or her performance is identified. Therefore, this may also be the first time that parents receive information that their child has special needs. When this is the case, parents can experience surprise, disbelief, or relief. School age is a time when children with disabilities may first discover that they have differences. How they make the adjustment to this information depends on the knowledge and sensitivity of the adults and children around them.

To the school-aged child, making friends and maintaining friendships become critically important. Some parents report concern if their children appear lonely, isolated, and friendless. Turnbull and Ruef found that children with behavioral problems frequently have no friends, leaving the parents with the additional responsibility of creating and supervising play opportunities with other children.¹⁶¹ Teachers and therapists can use different strategies to promote friendships in inclusive environments. Typically developing peers can take turns being a child’s “special buddy,” and they can offer assistance with projects or tutoring. In situations in which social stigma is an issue, peer relations can be promoted by explaining the disability to the other children and by designing classroom activities that promote cooperation and positive interaction.

Adolescence

Adolescence is a challenging and potentially stressful time for all families, as the development of self-identity, sexuality, and expectations of emotional and economic autonomy herald the transition to adulthood. These issues may pose additional challenges in the lives of children with disabilities as they maneuver through adolescence. Parents need to prepare the young person to handle his or her growing social, financial, and sexual needs, as well as how to avoid substance abuse. (See the review of high-risk behaviors in adolescents with chronic illness by Valencia and Cromer.¹⁶⁹) In certain cases, parents face decisions about their child’s use of birth control and protection from sexually transmitted diseases.⁴⁵ With adolescence, new concerns about a son’s or daughter’s vulnerability increase as that child ventures further into the community and beyond. These decisions will vary significantly depending on the nature of the disability: cognitive, physical, social, visible, or not. They will also be mediated by financial opportunities or constraints.

Although the child usually is well accepted by family members, the social stigma incurred from peers and others may increase during adolescence. As one mother said, “The community accepts our children much more easily when they are small and cute. Babyish mannerisms are no longer acceptable … [Our son] has had real problems with his social relationships. He simply does not know how to initiate a friendship. He has difficulty maintaining a sensible conversation with his peers. He doesn’t handle teasing well, so he is teased unmercifully” (p. 90).⁴

The cute child with unusual behaviors may become a not-so-cute adolescent with socially unacceptable behaviors. As one parent explained why her son was not invited to a holiday party, “Everyone in the family was invited except Billy. I thought it must be an oversight, but the friend later explained apologetically, ‘I thought Billy’s presence might make the other guests uncomfortable.’ This kind of attitude is difficult to accept, particularly when he had been included very successfully in a similar party. I find myself crying at the unfairness” (p. 16).¹⁴⁰

Other parents have reported difficulty in caring for their child’s growing physical needs. As the child reaches adulthood, parents who are reaching middle age may feel their strength and energy declining. As one parent put it,

Adolescence is the time when most parents must learn to let their children make their way in the world. For parents of children with disabilities, this time may require additional emotional support and financial resources. Magill-Evans, Wiart, Darrah, and Kratochvil conducted a small qualitative study with parents of adolescents with physical disabilities and some of the adolescents themselves that documented the multifaceted needs of each family in balancing the connection of the youth and the parent between the old way of relating and the new acceptance of the autonomy needs of the young adult.⁹⁷ They found that both the young person and the parent had issues to be dealt with at this time, ranging from the need of each for emotional support during the transition to the need for financial resources to meet the physical or educational requirements of the young person for care from nonfamily members. Gender differences have also been found to have significant impact during the transition to adulthood. In one survey study of adolescents receiving special education services, the expectations and opportunities regarding work and family for males were perceived to be greater, even though the female respondents placed greater emphasis on having children and going to college. In addition, while both genders were concerned about obtaining health insurance, more of the female respondents rated this as a very important goal.¹³³ As with all facets of the life cycle, this is a time for a sensitive, collaborative approach between families and service providers so that the right supports and resources are offered to each family.

Financial Resources

Having a child with special needs has implications for family economics. Parents with children who have disabilities have many hidden and ongoing expenses. When children are hospitalized, many expenses (e.g., days out of work, childcare for siblings, transportation, meals, motel rooms) are incurred, in addition to costs not covered by insurance.¹²³ Mothers on welfare reported that they faced multiple barriers.⁹⁴ Although they wanted to become self-sufficient, they found that employment seemed like a distant dream as they struggled with transportation and finding childcare, particularly for older children.¹⁷³ Jinnah and Stoneman offer an excellent review of literature and qualitative study on parents’ experiences with finding childcare for their school-age children.⁷⁰ Part of their recommendations address the training needs of providers of childcare, as well as the information needs of parents regarding the accessibility requirements of childcare centers under the Americans with Disabilities Act.

Although financial problems create added stress, therapists are often reluctant to discuss finances, especially costs associated with their own services. In a sample of mothers of children with cerebral palsy, Nastro found that insurance coverage was inadequate to meet the families’ needs. As one mother reported, “Each piece of equipment has a big price tag. Even the smallest piece has a couple-hundred-dollar price tag. Most insurance companies do not cover it. Medicaid does not cover everything” (p. 52).¹¹⁶

Also, many insurance plans have caps on the number of therapy visits allowed per year. Therefore, parents must cut back on services or pay for sessions by finding a way to save somewhere else. Children who require extensive medical treatment can bring economic devastation to a family, especially when insurance coverage is inadequate.^80,124

Another challenge to financial resources occurs when a parent decides to remain unemployed so that he or she has time to provide extra caregiving. Multiple studies have documented that a parent may need to work fewer hours, if at all, to care for the child.^10,132 With one spouse unable to take on paid employment, these households are at higher risk for problems associated with low income. Financial strain is increased in single-parent homes. Case-Smith found that mothers of children with medical conditions left employment because of the frequency of their children’s illness.²³ These children needed specialized medical care (i.e., nursing care) that prohibited their attending community childcare centers. The need to stay home with a child who has multiple medical needs and frequent illness coupled with lack of community childcare for such a child can become a particularly difficult situation for parents to manage. Part of the essence of family-centered care is addressing such needs in a family.⁷¹

Human Resources

The human resources important to a family in raising children are education, practical knowledge, and problem-solving ability. An understanding of the basis of the child’s problems and of possible adaptations is a powerful resource in helping families establish effective patterns of daily activities. As a parent, Marci Greene observed that a comprehensive parent–professional partnership should include ongoing sharing of information with parents.⁴⁸ Initially, most parents want additional information about their children’s conditions and about accessing services.⁸² This is followed by needing information about potential complications, and how to care for their child’s physical and psychological needs on a daily basis.⁶⁵ However, parents appreciate dialog with professionals beyond informational topics such as the development of feeding skills or behavioral management. Parents want professionals to share conceptual knowledge as well.⁴⁸ The timing of parents’ ability to use this knowledge and engage in home programs varies appreciably from the time of initial diagnosis of disability through adjustment to their situation, and in qualitative studies having the need for information met is often deemed inadequate.^65,131

Families who are coping with stress have reported that “the ability to build on personal experience and expertise” (p. 261) is an essential coping strategy.⁴⁷ Parents can develop this knowledge through parent-to-parent groups in which families can share strategies with other families who have similar types of issues.^40,177 For therapists, listening to parents and individualizing the information, as well as connecting family members to other resources, helps build the parents’ personal resources. The CanChild Centre for Childhood Disability Research has developed a formal, individualized information Keeping It Together™ (KIT) for parents, which has been shown to increase parent “perceptions of their ability and self-confidence in getting, giving and using information to assist their child with a disability” (p. 498).¹⁵³ Therapists must remember that many parents are the experts on their own children and often have extensive information or stories to share about what works for them.¹¹

Time Resources

Daily and weekly activities, by their very definition, require time investment, and every family at one time or another experiences stress because there are too many things to be done and not enough time. Children with disabilities often depend on caregivers longer than typically developing children, and the extra daily care or supervision needed can extend for many years.^30,40,97 The amount of time spent in shared activities around caregiving can be wearing and frustrating and can reduce the family’s time for recreation and social gatherings. In a study of more than 200 families of children with Down syndrome, mothers spent three times as much time in childcare as mothers of typically developing children.¹⁰ The fathers of children with Down syndrome spent twice as much time in childcare as fathers of typically developing children. One commonly used coping strategy of family caregivers is to organize the day into well-established routines.⁴⁷ Helitzer and colleagues found that mothers of children with disabilities reported that they used “structure, routine, and organized time management as a way to maintain a sense of control” (p. 28).⁵⁷ However, their busy, structured lives often were disrupted by crises, such as trips to the hospital or urgent care department and, as a result, the mothers felt they were “living on the edge” and that every disruption in their routines was experienced as a crisis.

Crowe found that mothers of children with multiple disabilities spent significantly more time in child care activities and less time in socialization than mothers of typical children.²⁹ In a qualitative study of parents of children with chronic medical conditions and disabilities, parents reported that they had round-the-clock responsibilities in administering medical procedures and performing caregiving tasks.²³ They described the challenges of “always being there” to care for their child’s extraordinary medical needs and to engage their very dependent child in developmentally appropriate activities. These parents, whose children were often ill and even hospitalized, were always “on call” and often had to cancel activities outside the home when the child was ill.

Service providers can be a source of threat to the family’s time and emotional resources. Providers seeking to implement family-centered practice often expect parents to take on responsibility for implementing therapy.^93,96 Greene described how her family “experienced the burden of home programming” as occupational therapists, physical therapists, and speech and language pathologists made separate recommendations, each requiring a chunk of the day.⁹³ These home assignments became a source of guilt and marital difficulty as the family struggled to meet the needs both of their daughter and of her typically developing sibling. Less experienced therapists, in their enthusiasm to help, often neglect to consider the family’s time commitments when offering suggestions.

Emotional Energy Resources

Families of children with disabilities may experience special forms of stress, social isolation, and less psychological well-being than families with typically developing children.^9,32,102 The idea that parents of children with disabilities experience recurrent grief is pervasive in the literature, yet disputed.^41,166 Fox et al. conducted a qualitative investigation to understand how children with developmental delays and behavioral problems influenced the family’s lifestyle.⁴⁰ Their parents suggested that dealing with the child’s needs required a lot of emotional energy from the different family members. One theme—“It’s a 24-hour, 7-day-a-week involvement”—was supported by stories of frustration from responding to challenging behaviors and applying parenting practices that would meet the needs of their children. Parents reported that individuals who offered “a shoulder to lean on” and professional assistance, encouragement, and information were particularly helpful.

Studies have shown that parents of children with disabilities may experience anxiety and depression.^55,120 Mothers appear more vulnerable than fathers. In a large comparison study of families of children with autism, developmental disability, or without disabilities, Olsson and Hwang found that mothers of children with autism were more depressed than mothers of children with mental retardation and that both groups were more depressed than mothers of children without disabilities. The fathers in these families did not exhibit more depression than fathers of typical children. Mothers’ self-competence may be more related to the parenting role than that of fathers, and mothers may be more vulnerable when stressful difficulties arise in the parenting domain. Hastings, investigating levels of stress, depression, and anxiety in a cohort of 18 couples with children with autism, found that mothers and fathers felt similar levels of stress; however, mothers were more anxious.⁵⁵ Mothers may feel more responsibility for the child⁵⁵ and may take on a larger part of the extra care that a child with disabilities requires.¹²⁰

When children have chronic medical problems that require round-the-clock use of technology, parents often find themselves exhausted and sleep deprived. Some of the consequences for parents whose children require routine medical procedures are anxiety and depression because of the risks inherent in the administration of the medical procedures. When parents must administer medical procedures beyond the typical parent–child activities of nurturance, caregiving, and play, they appear to experience stress and anxiety. In addition, they often do not have the time and resources to access energizing and relaxing activities, such as socializing and recreation.^9,80

Stress level in families with children with chronic diseases or conditions has been found to have a strong relationship with family income and family function, with lower income associated with higher stress, especially as the children become adolescents.⁹ Parents with limited resources, whether financial, educational, emotional, or a combination, are at higher risk of experiencing parental stress, which may lead to abusing or neglecting children with disabilities.¹⁵⁰ The added needs of children with chronic health issues or behavioral or intellectual limitations can push the low-resource parent over the edge of reason to a point where maltreatment of the child is the consequence.⁵⁸

Ethnic Background

Ethnicity is a term used to describe a common nationality or language shared by certain groups of families. It tends to be a broad concept, and heterogeneity among families within groups described as Latino, African American, Anglo-American, or Asian should be anticipated. Furthermore, people may identify themselves as belonging to more than one ethnic group, making it harder to use the concept to guide the way the therapist works with families. Coll and Pachter offer two reasons for retaining ethnicity as an important variable when working with families raising children.²⁷ First, families that are not part of the dominant ethnic group experience a discontinuity between their cultural models and the majority culture that shapes the social institutions. Thus a cultural as well as a language gap may exist between health systems and educational programs and the families of minority ethnic groups.² In addition, as the proportion of ethnic groups grows in the United States, the sons and daughters of these groups make up a larger proportion of the overall population of children in this country. Occupational therapists who serve children with special needs can anticipate working with an ever-growing, ethnically diverse group of families. The influence of ethnic background on the ways a family fulfills its functions and raises its children is a complex topic that is merely introduced here. Resources on the Evolve website provide further information.

Ethnic groups share cultural practices that can determine who has the authority to allocate family resources and a value system that sets priorities for family routines and special events. Families in an ethnic group may have similar daily activities, ways of interacting, and ways of thinking about events, and may find similar meaning in their routines, traditions, and celebrations. Differences among ethnic groups are expressed in gender role expectations, child-rearing practices, and expectations at certain ages, as well as in definitions of health and views of disability. Cultural practices are not static traits; rather, they change when members of the group adapt to new situations.⁵³

Although every family wants their children to be successful members of the community, their vision of what this entails varies among different ethnic groups and influences how children spend their time and what is expected of them.⁸⁸ Carlson and Harwood studied the structure and control Anglo-American and Puerto Rican mothers asserted over their infants during ADLs.²² The researchers observed mothers in their daily routines and found that Puerto Rican mothers controlled their infants’ behaviors more than the Anglo-American mothers, who tolerated more off-task behaviors. Carlson and Harwood pointed out that Puerto Rican parents are guided by the anticipation that their children will join a Puerto Rican community that values respectful cooperation. The Anglo-American willingness to follow the child’s lead is compatible with valuing individual autonomy. Without insight into ethnic differences, a therapist watching parent–child interaction may mistakenly interpret a Puerto Rican mother’s physical control and effort to divert a child’s attention to the needs of others as intrusive and insensitive to the toddler’s sense of identity and self-efficacy. Therapists avoid this type of error by understanding what a parent hopes to achieve before formulating an opinion about the appropriateness of a family’s interactive routines.

The influx of recent immigrants expands the diversity within ethnic groups that therapists will encounter. Within a community, one family may have members who have been in a country for generations, and the family next door may have recently relocated to the country. Migration affects the family and how it functions at multiple levels.³⁷ First, relocation to another country frequently includes a series of separations and reunions of children and family members. Suarez-Orozco, Todorova, and Louie found that 85% of the 385 youths in their sample of recent immigrants had been separated from a parent and nearly half had lived apart from both of their parents during the process of family migration.¹⁵⁵ Although the length of separation varied, it was not unusual for a child to have been apart from the father for 2 years or longer. In some families, the tradition of having a child live with a grandparent or other relative may buffer the initial separation and help reduce the stress. Yet when the children are brought into the United States to join their immigrant parents, they must leave behind a caregiver and familiar community. Researchers found that reunification could be protracted, because families may not have been able to pay for travel or housing for all family members, meaning that people arrived in stages, months or years apart. In addition, when both parents immigrated ahead of their children, it was not unusual for the children subsequently brought into the country to have to adjust to living not only with their parents again but also possibly with younger siblings born in the new country. Therapists working with immigrant families need to be sensitive to the possibility of family friction, depression, and a sense of uncertainty among family members.

For each immigrant family, the process of acculturation varies; this is the process of selectively blending their traditions in how things are done, what activities are important, and interactive styles with the cultural practices of the majority group.³⁷ Parenting practices might insulate children from exposure to the language, ways, and values of the majority culture until the children go to school. For example, enrolling children in child care programs may seem the equivalent of child abandonment in some cultures, and families may bring a grandparent with them as part of the immigration process so that both parents can find paid employment. This may mean that children entering school have had few experiences beyond their home environment. In school, surrounded by new peers, the children’s acculturation process is influenced, creating conflict among family members.²⁷ Unfortunately, feeling disconnected from home or discriminated against at school leads some youths to drop out of school as a way to ease the tension.⁵³ When this situation includes a child with disabilities, the occupational therapist has more to consider in addition to the specific needs of the child.²

Family Structure

Family features, such as the presence of children in the household, marital status, sexual orientation, and age/generation, are factors described as the family structure.¹ It is important to remember in working with families that acceptance of diversity within the family structure and family subsystems is necessary to be effective.

Family structure in combination with its cultural model influences how the family organizes itself to fulfill essential roles, such as caregiving of dependent family members or allocation of family resources. The idea that there is a best family structure in which children are raised is a myth.¹⁷⁴ For example, single-parent families have been portrayed as dysfunctional and as leaving children more vulnerable to having problems³; yet single parents have also been found to raise competent, well-adjusted children.¹¹⁴ One third of the births in the United States are to unmarried women.¹¹⁷ The majority of single-parent households are headed by women; however, the number of fathers who are single parents has increased.¹⁶⁸ The Fragile Families and Child Wellbeing Study is an attempt to discard myths and replace them with evidence that will guide intervention and policy making to support low-resource families.¹⁰⁵ Some of their findings demonstrate that “Unwed parents are committed to each other and to their children at the time of birth…Most unmarried mothers are healthy and bear healthy children” (p. 3).¹⁰⁵

Larson sampled the activities and emotions during activities of employed mothers in two-parent or single-parent homes of adolescents and found that the stereotype of the single-parent home was not necessarily the rule.⁸⁷ Single mothers in his study had less stressed, more flexible routines after a day at work, and friendlier relationships with their teenagers than did their counterparts in two-parent homes. Mothers with a husband reported more hassles trying to make and serve dinner by a designated dinnertime and experienced housework as more unpleasant. Larson speculates that the negotiation of responsibilities and trying to live up to expectations of being a “wife” in a two-parent home contributed to these differences. Clearly, every family structure has advantages and risk factors.⁸⁷

Gay, lesbian, and bisexual families reflect one variation of family structure that therapists encounter. Children may be the products of a parent’s previous heterosexual relationship or may be born or adopted into families headed by adults who are gay, lesbian, or bisexual.¹²⁷ Because parents do not want to expose their children to the prejudice of homophobia, many are reluctant to be identified, and estimates of the number of parents who are not heterosexual range from 1% to 12% of families.¹⁵¹ Many of the issues and needs of all parents are expressed by gay, lesbian, and bisexual parents.¹²⁵

Because sexual orientation has been the basis for judicial decisions that have denied people parenting rights, recent studies have investigated the issue of whether the sexual orientation of the parent affects the child’s behaviors or influences the child’s sexual orientation. Studies comparing the psychological adjustment and school performance of children being raised by lesbian or gay parents to those of children with heterosexual parents have generally found no differences.¹²⁷

A final source of stress, divorce, the way many single-parent families are formed, can cause disruption that alters household routines, traditions, and celebrations. Sometimes the stress between the marital partners leads to impaired occupational functioning of the children and the divorce may come as a relief. Factors that contribute to positive developmental outcomes for children after couples break up include the parents’ psychological well-being, economic resources, whether the family is part of a larger kinship network, and how parents navigate the separation and dissolution process. For example, Greene, Anderson, Hetherington, Forgatch, and DeGarmo reported contradictory findings regarding how well children adjust after their parents’ divorce.⁴⁹ Initially, parenting practices were erratic, and the parent–child relationship, especially between custodial mothers and young sons, could be stormy. Yet two years after a divorce, many of the problems had diminished; therefore, some of the consequences of divorce depend on where in the adjustment process researchers conduct their study. Anderson argued that the best way to strengthen single-parent families was to empower parents by recognizing their strengths and encouraging them to reestablish routines.⁵ The therapist can be supportive by acknowledging that these parents face considerable challenges in raising children alone and by aiding the parent in identifying resources such as friends, extended family, religious groups, and other single parents.

When birth parents are unable or unavailable to care for children, kinship care is a way to preserve family ties that might be lost if children are placed in foster homes.⁷⁵ Households in which grandparents are raising their grandchildren are examples of those providing kinship care and are a growing source of differences between families. These families, primarily headed by middle-aged or older women and disproportionately by women of color, are often formed after adverse events, such as child neglect or abandonment, maternal substance abuse, or incarceration or death of the parents.^72,75,85 Much of the research on grandparents raising their children’s children explores the issue of caregiver stress. Evidence from both qualitative and quantitative studies suggests that grandparents caring for their grandchildren (or great-grandchildren) find it both rewarding and challenging.^8,75 Grandparents reported satisfaction in being able to “be there” for the child or children and reported that they have had to learn new parenting skills in response to the new generation. However, they also experienced parenting stress, which was exacerbated when they lacked social support, had limited financial resources, or were in poor health. When a child is reported to have behavioral or health problems, the caregiving demands increase the grandparents’ sense of emotional distress.⁵⁶

During their childhood, many children experience changes in the family structure. Unwed mothers may marry, or parents in a family may divorce and later one or both may remarry. A child may transition from a two- to a three-generation family when an aging grandparent moves into the home. Therapists should talk with family members in an inclusive manner that does not suggest an assumed family structure. Asking a parent or child, “Can you tell me about your family” does not suggest any expectations about who is in a family and helps family members openly express their definition of who is in their family.

Socioeconomic Status

The influence of the family’s SES on children’s occupations and development is complex.⁶² SES reflects a composite of different factors, including the social prestige of family members, the educational attainment of the parents, and the family income. These factors influence each other and have various implications for how a family fulfills its functions, by influencing the degree of access families have to activities and experiences for their children. Education influences parenting practices by affecting how an adult incorporates new ideas about a healthy life style and child development into these practices. Factors that influence employment, such as a below-average education, inability to speak English, or disability of a family member, leave families more vulnerable as job opportunities come or go. When employment is found, the job may not pay enough to meet the family’s needs, leaving the family with no resources if unexpected events occur.

Researchers have demonstrated that low income or limited education is associated with differences in the quality of parents’ interaction with their children.^62,135 In these circumstances, parents may not be as responsive, addressing the child less often, providing fewer learning opportunities, and not engaging in an interactive teaching process. Parish and Cloud present a compelling review of the literature on the factors that lead children with disabilities to be more likely to live in poverty.¹²⁴ These factors include the increased cost of raising such a child and the decreased ability of their mothers to be employed, because of both the needs of the child and the lack of available child care. A recent study in England found the incidence of very preterm birth was much greater among mothers of lower SES, and preterm birth raises risk factors for the child.¹⁴⁸ Suggestions for working with families with low SES are addressed later in the chapter.

Therapists need sensitivity and skill to work with families across the SES continuum. Although this factor has not yet been addressed in the professional literature, having higher SES clearly affords additional opportunities, time, and expectations of parents for those experiences they desire for their children. The concept of “helicopter parents” who hover over every aspect of their child’s life tends to extend to their children with special needs. Therapists must draw on their many skills in assisting these parents to find balance between what can be done through direct service, what they can do themselves, and how to allow a child space in which to be a “typical” child.

Parenting Style and Practices

The individual interactive style and parenting practices of an adult raising a child are additional factors that must be considered in gaining an understanding of the diversity of families. Steinberg and Silk distinguish between parenting style, the emotional climate between parent and child, and parenting practices, goal-directed activities parents do in raising their children.¹⁵² For example, two parents may believe that if they want their children to do well in school, it is their responsibility to spend time with the children reviewing their homework (a parenting practice). However, the interpersonal interactions while they engage in this shared activity (parenting style) can be distinctly different. One parent may discuss the work and help the child find solutions to problems, whereas the other parent may feel he has the emotional energy only to point out errors. There is no test or license for parenting in this country. During the time of extended families, there was mentorship and modeling for parenting practices. In today’s nuclear families, stresses run higher and skills may be lacking. When work separates the family, or as the dysfunctional practices of previous generations come to play in the current generation, there is great need to help parents learn parenting skills. Some individual professionals and disciplines, often State Extension Services, are creating programs to teach parenting skills. This is an area in which the holistic occupational therapy knowledge base and framework would prove quite beneficial.

A well-adapted child develops as a result of from complex interactions between parenting style and practice. Regardless of ethnic background, poverty status, and parenting practices, a parenting style that is warm, responsive, and positive and that provides structure and learning opportunities is associated with children who rank higher on many measures of social and cognitive development.^6,152

Dialog between parents and therapists does not always go smoothly, and the collaborative nature of the relationship is sometimes lost if the parent and therapist hold different ideas about parenting style or parenting practices. This tension increases if the parent worries about the therapist’s disapproval.⁹¹ The professional cannot assume greater knowledge than the parent about what the child needs to be able to do or about the interactive style that best accompanies shared activities (Research Note 5-1). Therapists can be supportive and can empower parents by working with them so that family resources such as time and emotional energy are available when shared activities occur.

Development of Independence in Self-Care and Health Maintenance Routines

Occupational therapists who understand the nature of family occupations can help parents manage and adapt daily living tasks with their children. The therapist assists the parent in establishing goals about daily routines and tasks that the parent values, and then observes how they are being done. The therapist may engage the parent in a discussion of alternative strategies, or may model techniques that help the child perform daily living activities with greater skill and independence (Figure 5-8). With knowledge of the biomechanics of lifting and moving, the therapist considers whether the task is performed in a way that conserves energy and avoids injury. This consideration is especially important when a physical impairment significantly limits mobility. Strategies to help a 5-year-old bathe, dress, and use the toilet may no longer be safe for the parent’s back when the child becomes an adolescent. A therapist’s knowledge of adaptive solutions to self-care, such as Velcro fasteners, or, if standing balance is too challenging, dressing while sitting, can be quite helpful to parents, especially first-time parents.¹¹¹

Becoming independent in self-care occupations frequently requires repeated practice until performance becomes a habit. Occupational therapists who understand principles of behavior management can help parents reinforce a child’s efforts at independence. Continuity in frequently repeated self-care occupations, such as using the toilet and eating with utensils, is increased through communication among the occupational therapist, teacher, parents, and others. A notebook that the child carries between school and home may serve this purpose.

Routines that lead to more independence in self-care provide opportunities to enrich the child’s learning. During dressing, the child can improve strength by pulling up pants and increase vocabulary by naming colors found on the clothing. Therapists can suggest how to turn tasks into learning situations. However, as with all suggestions, the parent weighs the costs and benefits. Often the occupational therapist hears, “That just won’t work for us.” When this happens, a decision must be made regarding whether the task can serve two objectives, or whether the simple goal of independent self-care is sufficient.

Any extra time that the therapist asks the parent to spend teaching new steps in self-care should be in response to a parent’s identified need. In addition, the effort should be justified by evidence that the altered routine has a good chance of bringing an immediate change. Alternative suggestions should be made quickly when an adapted technique does not work. The goal of occupational therapy recommendations should be to benefit the entire family by increasing the child’s independence at minimal cost in time and energy to the parents. As stated by Bernheimer and Keogh, “Successful interventions are the ones that can be woven back into the daily routine; they are the threads that provide professionals with the means to reinforce, rather than fray, the fabric of everyday life” (p. 430) (Figure 5-9).¹²

Participation in Recreation and Leisure Activities

King, Law, Hanna, et al. and King, Law, King, et al. propose that the family’s ability to engage family members in recreational and leisure activities is the result of a multidimensional process that includes the community, the family, and the child with a disability (Figure 5-10).^77,78 Their conceptual framework draws on literature in leisure studies and work with families of children with special needs. Some factors can directly influence participation, such as availability of an inclusive program, wherein peers and activity leaders support and believe in the child’s ability to participate (Figure 5-11). Other factors, such as the extent to which the parents perceive acceptance from friends and neighbors and how parents view being active, indirectly shape whether families choose to participate in recreational activities in the community. Parents of children with developmental delays and behavioral problems will sometimes stop taking their child out in response to negative reactions of other people to their child’s noises or tantrums.⁴¹ Parents of children with developmental coordination disorder may need to consider individual rather than team sports as options for their children (Figure 5-12).¹¹¹ Resources, such as money to purchase equipment and time to transport children, influence the extent to which a family can participate in recreational activities. If families can afford vacations, many theme parks are now more accommodating to their needs (Figure 5-13).

Occupational therapists can communicate that they respect the value of recreation and leisure by including it in assessment and intervention plans. Therapists can suggest adapted equipment the child can use to make recreational activities possible. With the passage of the Americans with Disabilities Act in 1990, more recreational opportunities became available to individuals with disabilities. Information about community recreational activities is often available in local newsletters or on websites (Figure 5-14). Therapists can note which activities are accessible and appropriate for children with disabilities. They can also suggest strategies for making the family’s outings more successful, such as providing headphones for a child with auditory sensitivity. Practitioners can also help parents accomplish caregiving tasks efficiently to make more time available for recreation. Scheduling therapy and education programs to enable families to engage in recreational activities can also support family function.

Socialization and Participation in Social Activities

Socialization is needed not only for health; it is an important mechanism for preparing family members to enter their cultural group and participate in community activities. Most families of children with disabilities, particularly those with problem behaviors, report that far too few opportunities exist for participation in the community. Families perceive that they are the only socialization agent for their children because community social activities simply do not accommodate their children.¹⁶¹ In addition, children with disabilities may interact more frequently with adults than with peers, particularly if they have classroom aides. Constant interaction with adults to the exclusion of peers may exacerbate feelings of incompetence in interactions with peers.

Children with disabilities, particularly those with problem behaviors, face a “glaring void of friendships” (p. 224).¹⁶¹ Educational and intervention programs should focus more attention on helping friendships to develop and flourish. Although professionals have created more activities and environments that include children with disabilities, they have not necessarily encouraged mutual and reciprocal friendships to develop. Turnbull and Ruef urge professionals to focus on understanding the components of friendship and the connections that form into mutual friendships.¹⁶¹

The presence of disability in the child may also create barriers to the parents’ opportunities to socialize. Families of children with special needs often feel that they have less time to spend participating in social activities.³⁰ Because childcare is typically difficult to arrange and must be set up in advance, taking advantage of spontaneous social opportunities is rarely possible.¹²⁹ Children who act out or demonstrate disruptive behaviors may be particularly difficult to manage in social situations.

Parents often find it helpful to develop friendships with other parents experiencing similar circumstances. A number of studies have found that increased social supports are associated with healthier family functioning and lower levels of stress.^44,170 Helitzer et al. implemented a program for mothers of children with disabilities to address their concerns and difficulties in daily routines and coping.⁵⁷ The mothers were encouraged to provide emotional support to one another and to assist each other in resolving specific dilemmas in daily routines. These mothers perceived that they had changed their self-image and coping strategies through participation in the group sessions. They placed great value on having “a supportive opportunity to discuss their feelings and thoughts in a setting that was nonjudgmental and comfortable” (p. 408).¹⁷⁰ Similar programs offer parents social supports and strategies to help in coping, as well as practical ideas that make everyday life easier, help them adapt to stress, and give them a more positive attitude toward their children.¹⁷⁷ These social supports appear to be of equal or greater importance to families than professional services.²⁰

Fostering Readiness for Community Living

Families of children with disabilities express concerns about the future of these children, particularly once they leave school. They worry that these children will not have the life skills needed to live independently.^82,97 As children become adolescents and then young adults, parents need information on possible living arrangements in the community. Often young adults are capable of leaving home but need support persons and arrangements for short- or long-term supervision and monitoring. These young adults may not have many options, and the options either may be overly restrictive (to secure funding) or may not provide sufficient supervision. Parents of young adults with disabilities emphasize the need for information on housing, particularly innovative supported living arrangements. For these young adults to succeed in living in the community with support, families need assistance in finding roommates, other support persons, funding, and arrangements for supervision and monitoring.^97,161

Young adults with disabilities face many challenges in finding and maintaining employment,^133,161 but there are examples of successful transitions that give hope to families and professionals alike (Appendix 5-A).^97,166 Families and professionals need to work together to advocate for changes in the community to create opportunities for young adults to become employed and productive members of society (see Chapter 27).

Establishing a Partnership

The first interactions of the therapist with a family open the door to the establishment of a partnership. In a family-centered approach, the therapist demonstrates a family orientation that establishes trust and builds rapport through the use of open communication, mutual respect, shared decision making, and parental empowerment.¹⁴ The therapist’s initial interview reflects an interest not only in the child’s behaviors but also in the family’s concerns with managing those behaviors. These first interactions demonstrate that an equal partnership is desired and encourage a give and take of information. At the same time, parents begin to understand that professionals are there to help them and provide information and resources that support the child’s development.^7,51,159

Trust building is not easily defined, and it is associated with nonverbal language, words, and mutual respect. Thinking the best of families is important to the development of this partnership. This may not always be easy, particularly when the family’s lifestyle contradicts that of the professional. Being positive and maintaining a nonjudgmental position with a family can be challenging, but it is essential to establish and build a trusting relationship. Parent participants in focus groups defined respect as simple courtesies from professionals, such as being on time to meetings.¹⁵ The professionals who were interviewed linked respect to being nonjudgmental and accepting of families. When professionals are disrespectful to families, parents may become reluctant to access services or may lose their sense of empowerment. Demonstrating respect for families becomes particularly important when they are of different racial, ethnic, cultural, and socioeconomic status. Families from different cultures often have different perspectives on child rearing, health care, and disabilities. Table 5-1 lists cultural characteristics, examples, and the possible consequences for intervention programs.

Qualitative studies have revealed snapshots of actual family experiences with service providers. Blue-Banning and colleagues found families emphasized that partnerships were built on equality and reciprocity.¹⁵ A sense of equality was created when professionals acknowledged the validity of the parents’ point of view, and partnerships flourished when there were opportunities for each member to contribute. In contrast, Lea examined the perspectives of teenage mothers and their children’s providers of early intervention services and found the perception of a lack of partnering on the part of the providers.⁹² These mothers felt that their providers did not know or respect them, and that their concerns were ignored. This in turn led them to have little trust in the providers. Professionals must reflect on their practices and determine whether they are truly valuing the families they are working with and whether their expectations for intervention are aligned with the family’s values and goals.⁹⁶

Providing Helpful Information

Parents of children with disabilities report that information is a primary need from service providers.^47,65,89,153 The information that therapists provide to families about the intervention system prepares the families to work with existing systems, to use resources available, and to understand their rights as consumers. This information also enables the family members to become informed decision makers and to choose their level of participation in the intervention program.

Child-related information that may be of benefit to parents includes information about the child’s development, the disability, the child’s health, and assessment results. To provide up-to-date information, therapists must continually engage in reading and other professional development activities. Naturally, families want the most accurate and complete information, which places a responsibility on professionals to obtain current information and continually update their skills. The families in one qualitative study “admired providers who were willing to learn and keep up to date with the technology of their field…[A] competent professional is someone who is not afraid to admit when he or she does not know something, but is willing to find out” (p. 178).¹⁵

Although parents express that they want information about their child and about the diagnosis, it must be given in a supportive manner. Service providers who focused on the negative aspects of the child’s condition or compared the child to typically developing peers were viewed as not supportive.¹³⁰ Once a deficit has been identified and the child qualifies for services, hearing the child’s developing abilities expressed as delays or deficits can be hurtful for the parents. Describing what the child has accomplished using a criterion-referenced instrument, such as using the Pediatric Evaluation of Disability Inventory,⁵⁰ helps parents remain positive and encouraged. Using an occupation-centered approach, the therapist asks what self-care activities the child is attempting or what play skills are emerging. Articulating a therapeutic goal linked to an emerging skill that the parents have identified reduces professional jargon and helps parents understand how the intervention plan relates to their child. Typically, parents hope to receive recommendations for activities that help the child play, for toys that match the child’s abilities, and for strategies that lead to independence in self-care. They also look to the therapist for help in managing motor impairments or differences in sensory processing that limit occupational performance.

Providing Flexible, Accessible, and Responsive Services

Because each family is different and has individualized needs, services must be flexible and adaptable. The occupational therapist should continually adapt the intervention activities as the family’s interests and priorities change. Families value the commitment of professionals to their work and feel that it is important that professionals view them as “more than a case.”^15,52,103 Parents expressed appreciation when professionals exhibited “above and beyond” commitment by meeting with them outside the workday, remembering their child’s birthday, or bringing them materials to use.

Although therapists are often flexible and responsive to the child’s immediate needs and the parent’s concerns, the range of possible services is sometimes limited by the structure of the system. When a parent desires additional services, a change in location (e.g., home-based vs. center-based care), or services to be provided at a different time, the therapist may or may not be able to accommodate the request because of the therapist’s schedule. Often the agency or school system enforces policies regarding the therapist’s caseloads and scope of services. Practitioners are caught in the middle, between the system’s structure and individualized family needs. A ready solution does not always exist for the therapist who is constrained by time limitations, the demands of a large caseload, or institutional policies.

Much of the time, the therapist recognizes that he or she cannot change the structure of the system and must work as efficiently as possible within it. At the same time, the therapist should inform the family of the program’s rules and policies so that family members are aware of the constraints of the system. The occupational therapist can also take the initiative to work toward changing the system to allow more flexibility in meeting family needs. There is currently a discussion being carried out among stakeholders regarding what supports and services family-centered practice should encompass, as opposed to the usual focus of how it is carried out.¹⁶² It is necessary for occupational therapists to have a voice in this discussion because it is aimed at policy issues.

Some suggestions for therapists from parents on providing flexible and responsive services include the following¹⁶⁴:

Respecting Family Roles in Decision Making

Parents who share in decision making regarding intervention for their child are more satisfied with services.¹⁰⁹ Although professionals tend to acknowledge readily the role of the parents as decision makers, they do not always give parents choices or explain options in ways that enable parents to make good decisions. Too often, plans that should be family-centered are written in professional jargon and do not always address family concerns.¹⁶ Parents are involved in decision making about their child in the following ways:

Families cannot always be given a wide range of choices about who will provide services and when and where these services will be provided. However, their role in decision making should still be emphasized; otherwise, family-centered practice is not occurring.^13,93,96 Families who are empowered to make decisions early in the intervention process will be better prepared for that role throughout the course of the child’s development. In most cases, assessment of choices and good decision making are skills that parents promote in their children as they approach adulthood.

I’ve come to terms with being “only human.” If I could ensure that Zak could go through the day always moving in appropriate ways, flexing when he should flex, straightening when he should straighten, and play and learn and experience and appreciate … I would; but, that is not possible. I do have a responsibility to help Zachary develop his motor skills, but I also have a responsibility to help him learn about life. So on those days when we have so much fun together or are so busy that bedtime comes before therapy time, I finally feel comfortable that I have given him something just as vital to his development, a real “mom” (p. 4).⁹⁵

Families in Chronic Poverty

Beyond the diversity issues discussed under “Socioeconomic Status,” chronic poverty has a pervasive effect on family and child experiences. A majority of families receiving public assistance are children and mothers with poor educational backgrounds, an inconsistent work history, and low-wage jobs. Welfare recipients are often stereotyped as lazy and unmotivated, and as having children “just to make money off the system.”^92,141 In current economic circumstances, poverty has any number of causes. The process of “qualifying” for services can be frustrating, depersonalizing, and degrading. Once a family qualifies for help, resources are not always enough to make ends meet. In interviews with hundreds of single mothers living on welfare or working in low-paying jobs, Edin and Lein found that both groups had to engage in a variety of survival strategies to access enough resources to meet their families’ needs.³⁵ Both groups reported sharing apartments and working on the side or having a second job. In addition, both groups relied on financial assistance from their social network, such as the child’s father or family and friends.

Seccombe and colleagues conducted an ethnographic study of women receiving welfare and asked about their reasons for needing assistance.¹⁴¹ Although the participants realized that the U.S. culture tends to emphasize individual responsibility for rising above poverty, many of the women believed that bad luck was a primary reason their families needed assistance. Single parents are particularly vulnerable^35,105; without family members to help, these mothers lack control over the events in their lives. Unexpected events, such as a car breaking down or special meetings at school about a child, can cause the parent to miss hours at a job and can increase financial strain. Some women have reported that they returned to welfare and Medicaid “for the child.”¹⁴¹ Poverty represents a multidimensional issue, and therapists cannot make assumptions about the reasons a family lives in poverty.

Recognizing that poverty creates a unique cultural worldview enables therapists to consider what it means to provide family-centered services.^66,92 For example, a different world view of time, with the emphasis on the here and now, makes it harder to schedule or keep appointments. Families of low SES are rarely able to follow through with their plans. Therefore, planning for the future has little meaning, and participating in the setting of annual goals at IFSP or IEP meetings may not be considered important.

Further increasing the vulnerability of children with special needs who live in poverty are the multiple challenges that put their parents at greater risk for poor parenting. In one study, almost half (45%) of the mothers struggled with depression, and fewer than half of them reported that they had a family member who could help babysit.¹³⁸ Even with incentives such as diapers, toys, and food, low-income mothers got their children to an early intervention program only 40% to 50% of the time, compared with 75% of the time for middle-income mothers.¹⁹ Therapists who are aware that poverty creates special conditions strive to individualize intervention plans and consider how formal support can replicate the positive effects of social support to promote better parenting.^19,34

It is necessary to look beyond simple associations between poverty and parenting, because some parents do better than others despite a low SES.¹¹⁴ Occupational therapists need to understand how some parents living in poverty adapt and raise children successfully (Case Study 5-1). For example, single parents who have strict disciplinary standards may seem harsh. However, their parenting practices may be grounded in an anticipation that their children will grow into a world where obedience to people in authority is important for keeping a job. Other parents who restrict their children’s community activities may be effective in monitoring who they are with, minimizing the negative influences of poor neighborhoods. When a therapist is sensitive to and deeply understands a family with a low SES, she or he can make recommendations that help the child with special needs while supporting the family in their precarious position.

Parents with Special Needs

Parents themselves may have special needs that require an emphasis on supportive services. Parents who face physical or sensory challenges may need help in solving problems, such as monitoring the activity of an active child or being alerted to the cry of an infant.¹⁰⁷ Occupational therapists, who work from the perspective that parenting reflects a process of co-occupation, can assist the parent in the modification of tasks. For example, adapting the location of routines, such as diaper changing and infant bathing, can enable parents with physical limitations to participate in caregiving and simple routines that build affection between the parent and child. Therapists can explore the use of adaptive equipment, such as motion detectors or sound-activated alarm systems, to compensate for the parents’ sensory deficits and ensure responsiveness to their child’s cues. Most parents who have had long-term experiences with a physical limitation independently develop creative solutions for providing care for their children, and they only occasionally seek a therapist’s assistance in determining how to perform specific caregiving tasks.

Parents who struggle with drug addiction or mental health conditions may worry whether they are up to caregiving responsibilities.¹⁰⁴ They often require counseling, mental health services, and opportunities to participate in support groups.¹¹⁹ When parents have special needs that strongly influence their caregiving ability, their needs often become the first emphasis of intervention.

Parents with intellectual disabilities, mental health issues, or drug addiction are at risk for having children with developmental disabilities. Professionals have questioned the competency of parents with intellectual delays, and courts have removed their children in disproportionate numbers.¹⁷ However, with support systems in place, these parents can be surprisingly successful. Parents at risk because of intellectual or mental health impairments appear to be most successful in caring for young children when they are married, have few children, have adequate financial support, and have multiple sources of support.¹⁶⁷

In providing support to parents with intellectual disabilities, Espe-Sherwindt and Kerlin recommended that professionals focus on the parents’ internal and external control, self-esteem, social skills, and problem-solving skills.³⁶ Therapists can help empower parents to make their own decisions, thereby increasing their sense of self-control. Often individuals with intellectual delay or drug addiction have low self-esteem and lack confidence in their ability to make decisions. Because self-esteem is important in interactions with children, this aspect of interaction should be considered.

Professionals should also focus on helping parents with intellectual or mental health impairments build problem-solving skills. Everyday care for children requires constant problem solving. Many times professionals give advice or recommendations without encouraging the parents to solve the problem independently or to try their own actions first. When others direct parents, they become more dependent. However, when parents successfully solve a problem, they become empowered to act independently in daily decision making. Problem solving can be taught and modeled. Espe-Sherwindt and Kerlin suggested that teaching problem-solving skills in daily caregiving could be critical to parents’ development of caregiving competence.³⁶

When occupational therapists work with parents with intellectual or mental health impairments, it becomes essential to know the parents’ learning styles and abilities. Many times instructions need to be repeated and reinforced. Therapists must use good judgment in what techniques are taught to these parents, with emphasis on safe and simple methods. The occupational therapist should also recognize the need for additional support to help parents with intellectual delays access those needed services. Regular visits in the home by aides, nurses, or teaching assistants can meet the level of support needed. If the occupational therapist communicates his or her goals and strategies to the visiting aide, therapy activities are more likely to be implemented by the parents and other professionals working with the family.

Working with parents with intellectual or mental health impairments can be frustrating when appointments are missed or requests are not followed. Therefore, an understanding of the parents’ needs is essential. The development of simple, repetitive routines and systems that the parents can learn and follow enables them to become competent caregivers. With support, they can offer a child a positive and loving environment that fosters both health and development.

Professionals use a variety of strategies to deal with challenging families. When families have continual stress and problems, it is important for therapists to begin to build trust slowly, to share observations and concerns, and to accept parents’ choices.³¹ When parents do not seem to understand the intervention process, professionals can attempt to establish rapport by using concrete, simple terms; by providing both graphic and oral information; and by providing ideas that would immediately help the child. Professionals also report that parents can better articulate their concerns when services are home based, when lay terminology is used, and when services are presented in a slow, nonjudgmental way.³¹ Focusing on the child’s strengths and developing trust and responsiveness are also important when parents are coping with their own challenges.

1. Allen, K.R., Fine, M.A., Demo, D.H. An overview of family diversity: Controversies, questions and values. In: Demo D.H., Allen K.R., Fine M.A., eds. Handbook of family diversity. New York: Oxford University Press; 2000:1–14.

2. Alvarado, M.I. Mucho camino: The experiences of two undocumented Mexican mothers participating in their child’s early intervention program. American Journal of Occupational Therapy. 2004;58:521–530.

3. Amato, P.R. Diversity within single-parent families. In: Demo D.H., Allen K.R., Fine M.A., eds. Handbook of family diversity. New York: Oxford University Press; 2000:149–172.

4. Anderson, C. The diversity, strengths and challenges of single-parent households. In: Walsh F., ed. Normal family processes: Growing diversity and complexity. 3rd ed. New York: Guilford Press; 2003:121–152.

5. Anderson, D. He’s not “cute” anymore. In: Dougan T., Isbell L., Vyas P., eds. We have been there. Nashville, TN: Abington Press; 1983:90–91.

6. Aran, A., Shalev, R.S., Biran, G., Gross-Tsur, V. Parenting style impacts on quality of life in children with cerebral palsy. Journal of Pediatrics. 2007;151:56–60.

7. Bailey, D.B., Bruder, M.B., Hebbeler, K., Carta, J., Defosset, M., Greenwood, C., et al. Recommended outcomes for families of young children with disabilities. Journal of Early Intervention. 2006;28:227–251.

8. Baird, A., John, R., Hayslip, B. Custodial grandparenting among African Americans: A focus group perspective. In: Hayslip B., Glen R.G., eds. Grandparents raising grandchildren: Theoretical, empirical, and clinical perspectives. New York: Springer Publishing; 2000:125–144.

9. Barakat, L.P., Patterson, C.A., Tarazi, R.A., Ely, E. Disease-related parenting stress in two sickle cell disease caregiver samples: Preschool and adolescent. Families, Systems, & Health. 2007;25:147–161.

10. Barnett, S., Boyce, G.C. Effects of children with Down syndrome on parents’ activities. American Journal of Mental Retardation. 1995;100(2):115–127.

11. Bedell, G.M., Cohn, E.S., Dumas, H.M. Exploring parents’ use of strategies to promote social participation of school-age children with acquired brain injuries. American Journal of Occupational Therapy. 2005;59:273–284.

12. Bernheimer, L.P., Keogh, B.K. Weaving interventions into the fabric of everyday life: An approach to family assessment. Topics in Early Childhood Special Education. 1995;15:415–433.

13. Bernheimer, L.P., Weisner, T.S. Let me just tell you what I do all day…”: The family story at the center of intervention research and practice. Infants & Young Children. 2007;20(3):192–201.

14. Betz, C.L. Parent-professional partnerships: Bridging the disparate worlds of children, families, and professionals [Editorial]. Journal of Pediatric Nursing: Nursing Care of Children & Families. 2006;21(5):333–335.

15. Blue-Banning, M., Summers, J.A., Frankland, H.C., Nelson, L.L., Beegle, G. Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children. 2004;70(2):167–184.

16. Boone, H.A., McBride, S.L., Swann, D., Moore, S., Drew, B.S. IFSP practices in two states: Implications for practice. Infants and Young Children. 1998;10(4):36–45.

17. Booth, T., Booth, W. Brief research report: Findings from a court study of care proceedings involving parents with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2004;1:179–181.

18. Bradley, R.H., Corwyn, R.F., McAdoo, H.P., Coll, C.G. The home environments of children in the United States: Part 1. Variations by age, ethnicity, and poverty status. Child Development. 2001;72:1844–1867.

19. Brinker, R.P. Family involvement in early intervention: Accepting the unchangeable, changing the changeable, and knowing the difference. Topics in Early Childhood Special Education. 1992;12(3):307–332.

20. Britner, P.A., Morog, M.C., Pianta, R.C., Marvin, R.S. Stress and coping: A comparison of self-report measures of functioning in families of young children with cerebral palsy or no medical diagnosis. Journal of Child and Family Studies. 2003;12:335–348.

21. Bronfenbrenner, U. Discovering what families do. In: Blankenhorn D., Bayme S., Elshtain J.B., eds. Rebuilding the nest. Milwaukee: Family Service America; 1990:27–38.

22. Carlson, Harwood. Attachment, culture, and the caregiving system: The cultural patterning of everyday experiences among Anglo and Puerto Rican mother-infant pairs. Infant Mental Health Journal. 2003;24:53–73.

23. Case-Smith, J. Parenting a child with a chronic medical condition. American Journal of Occupational Therapy. 2004;58:551–560.

24. Case-Smith, J., Nastro, M. The effect of occupational therapy intervention on mothers of children with cerebral palsy. American Journal of Occupational Therapy. 1993;46:811–817.

25. Case-Smith, J., Sainato, D., McQuaid, J., Deubler, D., Gottesman, M., Taber, M. IMPACTS project: Preparing therapists to provide best practice early intervention services. Physical & Occupational Therapy in Pediatrics. 2007;27(3):73–90.

26. Christian, L.G., Understanding families: Applying family systems theory to early childhood practice. Journal of the National Association for the Education of Young Children (electronic), 2006.. Retrieved April 28, 2008, from, http://journal.naeyc.org/btj/200601/ChristianBTJ.asp..

27. Coll, C.G., Pachter, L.M., Ethnic and minority parenting. Bornstein, M.H., eds. Handbook of parenting, 2nd ed., Vol. 4. Mahwah, NJ: Lawrence Erlbaum, 2002;1–20.

28. Connard, C., Novick, R. The ecology of the family: A background paper for a family-centered approach to education and social service delivery. Retrieved January 28, 2008, from http://www.nwrel.org/cfc/publications/ecology2.html, 1996.

29. Crowe, T.K. Time use of mothers with young children: The impact of a child’s disability. Developmental Medicine and Child Neurology. 1993;35:612–630.

30. Crowe, T.K., Florez, S.I. Time use of mothers with school-age children: A continuing impact of a child’s disability. American Journal of Occupational Therapy. 2006;60:194–203.

31. DeGangi, G.A., Wietlesbach, S., Poisson, S., Stein, E., Royeen, C. The impact of culture and socioeconomic status on family-professional collaboration: Challenges and solutions. Topics in Early Childhood Special Education. 1994;14(4):503–520.

32. DeGrace, B.W. The everyday occupation of families with children with autism. American Journal of Occupational Therapy. 2004;58:543–550.

33. Dolev, R., Zeedyk, M.S. How to be a good parent in bad times: Constructing parenting advice about terrorism. Child: Care, Health & Development. 2006;32(4):467–476.

34. Dunst, C.J., Trivette, C.M., Jodry, W. Influences of social support on children with disabilities and their families. In: Guralnick M.J., ed. The effectiveness of early intervention. Baltimore: Brookes; 1997:499–522.

35. Edin, K., Lein, L. Work, welfare, and single mothers’ economic survival strategies. American Sociological Review. 1996;61:253–266.

36. Espe-Sherwindt, M., Kerlin, S.L. Early intervention with parents with mental retardation: Do we empower or impair. Infants and Young Children. 1990;2(4):21–28.

37. Falicov, C.J. Immigrant family processes. In: Walsh F., ed. Normal family processes: Growing diversity and complexity. 3rd ed. New York: Guilford Press; 2003:280–300.

38. Fiese, B.H., Tomcho, T.J. Finding meaning in religious practices: The relation between religious holiday ritual and marital satisfaction. Journal of Family Psychology. 2001;15:597–609.

39. Fine, M.A., Demo, D.H., Allen, K.R. Family diversity in the 21st century: Implications for research, theory and practice. In: Demo D.H., Allen K.R., Fine M.A., eds. Handbook of family diversity. New York: Oxford University Press; 2000:440–448.

40. Fox, L., Vaughn, B.J., Wyatte, M.I., Dunlap, G. We can’t expect other people to understand”: Family perspectives on problem behaviors. Exceptional Children. 2002;68:437–450.

41. Gallagher, P.A., Fialka, J., Rhodes, C., Arceneaux, C. Working with families: Rethinking denial. Young Exceptional Children. 2001;5(2):11–17.

42. Gallagher, P.A., Rhodes, C.A., Darling, S.M. Parents as professionals in early intervention: A parent educator model. Topics in Early Childhood Special Education. 2004;24(1):5–13.

43. Gallimore, R., Lopez, E.M. Everyday routines, human agency and ecocultural context: Construction and maintenance of individual habits. Occupational Therapy Journal of Research. 2002;22:70–77.

44. Gavidia-Payne, S., Stoneman, Z. Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development. 1997;68:701–717.

45. Gordon, P.A., Tschopp, M.K., Feldman, D. Addressing issues of sexuality with adolescents with disabilities. Child and Adolescent Social Work Journal. 2004;21(5):513–527.

46. Grant, G., Ramcharan, P., Goward, P. Resilience, family care and people with intellectual disabilities. International Review of Research in Mental Retardation. 2003;26:135–173.

47. Grant, G., Whittell, B. Differentiated coping strategies in families with children or adults with intellectual disabilities: The relevance of gender, family composition and the life span. Journal of Applied Research in Intellectual Disabilities. 2000;13:256–275.

48. Greene, M. A parent’s perspective. Topics in Early Childhood Special Education. 1999;19:147.

49. Greene, S.M., Anderson, E.R., Hetherington, E.M., Forgatch, M.S., DeGarmo, D.S. Risk and resilience after divorce. In: Walsh F., ed. Normal family processes: Growing diversity and complexity. 3rd ed. New York: Guilford Press; 2003:96–120.

50. Haley, S.M., Coster, W.J., Ludlow, L.H., Haltiwanger, J.T., Andrellos, P.J. Pediatric Evaluation of Disability Inventory. San Antonio: Psychological Corporation, 1992.

51. Hanft, B.E., Rush, D.D., Shelden, M.L. Coaching families and colleagues in early intervention. Baltimore: Paul H. Brookes, 2004.

52. Harrison, C., Romer, T., Simon, M.C., Schulze, C. Factors influencing mothers’ learning from paediatric therapists: A qualitative study. Physical & Occupational Therapy in Pediatrics. 2007;27:77–96.

53. Harwood, R.L., Leyendecker, B., Carlson, J., Asencio, M., Miller, A.M. Parenting among Latino families in the U.S. In Bornstein M.H., ed.: Handbook of parenting: Social conditions and applied parenting, 2nd ed., Mahwah, NJ: Lawrence Erlbaum Associates, 2002.

54. Hasselkus, B.R. The meaning of everyday occupation. Thorofare, NJ: Slack, 2002.

55. Hastings, R.P. Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research. 2003;47:231–237.

56. Hayslip, B., Emick, M.A., Henderson, C.E., Elias, K. Temporal variations in the experience of custodial grand parenting: A short-term longitudinal study. Journal of Applied Gerontology. 2002;21:139–156.

57. Helitzer, D.L., Cunningham-Sabo, L.D., VanLeit, B., Crowe, T.K. Perceived changes in self-image and coping strategies of mothers of children with disabilities. Occupational Therapy Journal of Research. 2002;22(1):25–33.

58. Hibbard, R.A., Desch, L.W., the Committee on Child Abuse and Neglect and Council on Children with Disabilities. Maltreatment of children with disabilities. Pediatrics. 2007;119(5):1018–1025.

59. Hinojosa, J. How mothers of preschool children with cerebral palsy perceive occupational and physical therapists and their influence on family life. Occupational Therapy Journal of Research. 1990;10(3):144–162.

60. Hinojosa, J., Sproat, C.T., Mankhetwit, S., Anderson, J. Shifts in parent-therapist partnerships: Twelve years of change. American Journal of Occupational Therapy. 2002;56:556–563.

61. Hodapp, R.M. Families of persons with Down Syndrome: New perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews. 2007;13:279–287.

62. Hoff, E., Laursen, B., Tardif, T., Socioeconomic status and parenting. Bornstein, M.H., eds. Handbook of parenting, 2nd ed., Vol. 2. Mahwah, NJ: Lawrence Erlbaum Associates, 2002;231–252.

63. Holloway, R.L. Families and chronic illness: Introduction to the special section for. Families, Systems, and Health. Families, Systems, & Health. 2007;25:243–245.

64. Hombeck, G.N., Gorey-Ferguson, L., Hudson, T., Seefeldt, T., Shapera, W., Turner, T., et al. Maternal, paternal, and marital functioning in families of preadolescents with spina bifida. Journal of Pediatric Psychology. 1997;22:167–181.

65. Hummelinck, A., Pollock, K. Parents’ information needs about the treatment of their chronically ill child: A qualitative study. Patient Education and Counseling. 2006;62:228–234.

66. Humphry, R. Families living in poverty: Meeting the challenge of family-centered services. American Journal of Occupational Therapy. 1995;49:687–693.

67. Humphry, R. Young children’s occupations: Explicating the dynamics of developmental processes. American Journal of Occupational Therapy. 2002;56:171–179.

68. Humphry, R., Wakeford, L. Development of everyday activities: A model for occupation-centered therapy. Infants & Young Children. 2008;21(3):230–240.

69. Individuals with Disabilities Education Act of 2004 (IDEA). (P.L. 108-446.)

70. Jinnah, H.A., Stoneman, Z. Parents’ experiences in seeking child care for school age children with disabilities—where does the system break down. Children and Youth Services Review. 2008;30(8):967–977.

71. Johnson, C.P., Kastner, T.A., the Committee/Section on Children With Disabilities. Clinical report: Helping families raise children with special health care needs at home. Pediatrics. 2005;115(2):507–511.

72. Joslin, D. Emotional well-being among grandparents raising children affected and orphaned by HIV disease. In: Hayslip B., Glen R.G., eds. Grandparents raising grandchildren: theoretical, empirical, and clinical perspectives. New York: Springer Publishing; 2000:87–105.

73. Kaiser, A.P., Hancock, T.B. Teaching parents new skills to support their young children’s development. Infants and Young Children. 2003;16:9–22.

74. Kellegrew, D. Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy. 2000;54:252–259.

75. Kelley, S.J., Whitley, D., Sipe, T.A., Yorker, B.C. Psychological distress in grandmother kinship care providers: The role of resources, social support and physical health. Child Abuse and Neglect. 2000;24:311–321.

76. King, G.A., King, S.M., Rosenbaum, P.L. How mothers and fathers view professional caregiving for children with disabilities. Developmental Medicine and Child Neurology. 1996;38:397–407.

77. King, G., Law, M., Hanna, S., King, S., Hurley, P., Rosenbaum, R., et al. Predictors of the leisure and recreation participation of children with physical disabilities: A structural equation modeling analysis. Children’s Health Care. 2006;35(3):209–234.

78. King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M.K., Young, N.L. A conceptual model of factors affecting the recreation and leisure participation of children with disabilities. Physical and Occupational Therapy in Pediatrics. 2003;23:63–89.

79. King, G., Tucker, M.A., Baldwin, P., Lowry, K., LaPorta, J., Martens, L., et al. A life needs model of pediatric service delivery: Services to support community participation and quality of life for children and youth with disabilities. Physical & Occupational Therapy in Pediatrics. 2002;22(2):53–77.

80. Kirk, S. Families’ experiences of caring at home for a technology-dependent child: A review of the literature. Child: Care, Health and Development. 1998;24(2):101–114.

81. Knott, F., Lewis, C., Williams, T. Sibling interaction of children with autism: Development over 12 months. Journal of Autism and Developmental Disorders. 2007;37:1987–1995.

82. Knox, M., Parmenter, T.R., Atkinson, N., Yezbeck, M. Family control: The views of families who have a child with an intellectual disability. Journal of Applied Research in Intellectual Disabilities. 2000;13:17–28.

83. Koramoa, J., Lynch, M.A., Kinnair, D. A continuum of child-rearing: Responding to traditional practices. Child Abuse Review. 2002;11:415–421.

84. Kotchick, B.A., Forehand, R. Putting parenting in perspective: A discussion of the contextual factors that shape parenting practices. Journal of Child and Family Studies. 2002;11:255–269.

85. Kroll, B. A family affair Kinship care and parental substance misuse: Some dilemmas explored. Child and Family Social Work. 2007;12:84–93.

86. Laird, J. Lesbian and gay families. In Walsh F., ed.: Normal family processes: growing diversity and complexity, 3rd ed., New York: Guilford Press, 2003.

87. Larson, R., Mothers’ time in two-parent and one-parent families: The daily organization of work, time for oneself, and parenting of adolescents. Minding the time in family experiences: emerging perspectives and issues, New York, Elsevier Science, 2001;Vol. 3:85–109.

88. Larson, R.W., Verma, S. How children and adolescents spend time across the world: Work, play, and developmental opportunities. Psychological Bulletin. 1999;125:701–736.

89. Law, M., Teplicky, R., King, S., King, G., Kertoy, M., Moning, T., et al. Family-centred service: Moving ideas into practice. Child: Care, Health & Development. 2005;31:633–642.

90. Lawlor, M.C., Mattingly, C.F. The complexities embedded in family-centered care. American Journal of Occupational Therapy. 1998;52:2059–2067.

91. Lawlor, M.C., Mattingly, C.F. Beyond the unobtrusive observer: Reflections on researcher-informant relationships in urban ethnography. American Journal of Occupational Therapy. 2001;55(2):147–154.

92. Lea, D. You don’t know me like that’: Patterns of disconnect between adolescent mothers of children with disabilities and their early interventionists. Journal of Early Intervention. 2006;28(4):264–282.

93. Leiter, V. Dilemmas in sharing care: Maternal provision of professionally driven therapy for children with disabilities. Social Science & Medicine. 2004;58:837–849.

94. LeRoy, B.W. Mothering children with disabilities in the context of welfare reform. In: Escaile S.A., Olson J.A., eds. Mothering occupations: challenge, agency, and participation. Philadelphia: F.A. Davis; 2004:372–390.

95. Lyon, J. I want to be Zak’s mom, not his therapist. Developmental Disabilities Special Interest Section Newsletter. 1989;12(1):4.

96. MacKean, G.L., Thurston, W.E., Scott, C.M. Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expectations. 2005;8:74–85.

97. Magill-Evans, J., Wiart, L., Darrah, J., Kratochvil, M. Beginning the transition to adulthood: The experiences of six families with youths with cerebral palsy. Physical & Occupational Therapy in Pediatrics. 2005;25(3):19–36.

98. Margetts, J.K., Le Couteur, A., Croom, S. Families in a state of flux: The experiences of grandparents in autism spectrum disorder. Child: Care, Health and Development. 2006;32:565–574.

99. Markson, S., Fiese, B.H. Family rituals as a protective factor for children with asthma. Journal of Pediatric Psychology. 2000;25:471–479.

100. McBride, S.L., Brotherson, M.J., Joanning, H., Whiddon, D., Dermitt, A. Implementation of family-centered services: Perceptions of families and professionals. Journal of Early Intervention. 1993;17:414–430.

101. McCubbin, M., Balling, K., Possin, P., Frierdich, S., Bryne, B. Family resilience in childhood cancer. Family Relations. 51. 2002:103–111.

102. McGuire, B.K., Crowe, T.K., Law, M., VanLeit, B. Mothers of children with disabilities: Occupational concerns and solutions. OTJR: Occupation, Participation and Health. 2004;24:54–63.

103. McIntosh, J., Runciman, P. Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations. International Journal of Nursing Studies. 2008;45:714–726.

104. McKay, E.A. Mothers with mental illness: an occupation interrupted. In: Escaile S.A., Olson J.A., eds. Mothering occupations: Challenge, agency, and participation. Philadelphia: F.A. Davis; 2004:238–258.

105. McLanahan, S., Garfinkel, I., Reichman, N., Teitler, J., Carlson, M., Audigier, C.N. The fragile families and child wellbeing study: Baseline national report, 2003. Retrieved March 18, 2008, from, http://www.fragilefamilies.princeton.edu/publications.asp.

106. McWilliam, R.A., Tocci, L., Harbin, G.L. Family-centered services: Service providers’ discourse and behavior. Topics in Early Childhood and Special Education. 1998;18(4):206–221.

107. Meadow-Orlans, K.P. Sources of stress for mothers and fathers of deaf and hard of hearing infants. American Annals of the Deaf. 1995;140(4):352–357.

108. Melamed, B.G., Parenting the ill child. Bornstein, M.H., eds. Handbook of parenting, 2nd ed., Vol. 5. Mahwah, NJ: Lawrence Erlbaum, 2002;329–348.

109. Merenstein, D., Diener-West, M., Krist, A., Pinneger, M., Cooper, L.A. An assessment of the shared-decision model in parents of children with acute otitis media. Pediatrics. 2005;116:1267–1275.

110. Meyer, D.J., Vadasy, P.F. Sibshops: workshops for siblings of children with special needs. Baltimore: Paul H. Brookes, 1994.

111. Missiuna, C., Moll, S., King, S., King, G., Law, M. A trajectory of troubles: Parents’ impressions of the impact of developmental coordination disorder. Physical & Occupational Therapy in Pediatrics. 2007;27(1):81–101.

112. Morton, K. Identifying the enemy: A parent’s complaint. In: Turnbull H.R., Turnbull A., eds. Parents speak out: Now and then. Columbus, OH: Merrill; 1985:143–148.

113. Murphy, K.E. Parenting a technology assisted infant: Coping with occupational stress. Social Work in Health Care. 1997;24(3/4):113–126.

114. Murray, M., Bynum, M.S., Brody, G.H., Willert, A., Stephens, K. African American single mothers and children in context: A review of studies on risk and resilience. Clinical Child and Family Psychology Review. 2001;4:133–155.

115. Nagy, S., Ungerer, J. The adaptation of mothers and fathers to children with cystic fibrosis: A comparison. Children’s Health Care. 1990;19(3):147–154.

116. Nastro, M. An ethnographic study of mothers of children with cerebral palsy and the effect of occupational therapy intervention on their lives. Columbus: Ohio State University, 1992. [Unpublished master’s thesis].

117. National Center for Health Statistics Unmarried Childbearing, 2000. Retrieved July 2003 from, www.cdcgov/nchs/fastats/unmarry.htm.

118. Ninio, A., Rinott, N. Fathers’ involvement in the care of their infants, and their attributions of cognitive competence to infants. Child Development. 1988;59:652–663.

119. O’Keefe, N., O’Hara, J. Mental health needs of parents with intellectual disabilities. Current Opinion in Psychiatry. 2008;21(5):463–468.

120. Olsson, M.B., Hwang, C.P. Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research. 2001;45:535–543.

121. Opacich, K., Savage, T.A. Mothers with chronic illness: reconstructing occupation. In: Escaile S.A., Olson J.A., eds. Mothering occupations: Challenge, agency, and participation. Philadelphia: F.A. Davis; 2004:217–237.

122. Oswald, R.F., Culton, L.S. Under the rainbow: Rural gay life and its relevance for family providers. Family Relations. 2003;52:72–81.

123. Parish, S.L., Cloud, J.M. Child care for low-income school-age children: Disability and family structure effects in a national sample. Children and Youth Services Review. 2006;28:927–940.

124. Parish, S.L., Cloud, J.M. Financial well-being of young children with disabilities and their families. Social Work. 2006;51(3):223–232.

125. Park, C.A. Lesbian parenthood: A review of the literature. American Journal of Orthopsychiatry. 1998;68:376–389.

126. Parke, R.D., Fathers and families. Bornstein, M.H., eds. Handbook of parenting, 2nd ed., Vol. 3. Mahwah, NJ: Lawrence Erlbaum, 2002;27–74.

127. Patterson, C.J. Lesbian and gay parenthood. In: Bornstein M.H., ed. Handbook of parenting. 2nd ed. Mahwah, NJ: Lawrence Erlbaum Associates; 2002:317–338.

128. Patterson, J.M. Integrating family resilience and family stress theory. Journal of Marriage and Family. 2002;64:349–360.

129. Patterson, J.M., Blum, R.W. Risk and resilience among children and youth with disabilities. Archives of Pediatric Adolescent Medicine. 1996;1150:692–698.

130. Patterson, J.M., Garwick, A.W., Bennett, F.C., Blum, R.W. Social support in families of children with chronic conditions: Supportive and nonsupportive behaviors. Developmental and Behavioral Pediatrics. 1997;18:383–391.

131. Piggot, J., Hocking, C., Paterson, J. Parental adjustment to having a child with cerebral palsy and participation in home therapy programs. Physical & Occupational Therapy in Pediatrics. 2003;23(4):5–29.

132. Porterfield, S.L. Work choices of mothers in families with children with disabilities. Journal of Marriage and Family. 2002;64:972–981.

133. Powers, K., Hogansen, J., Geenen, S., Powers, L.E., Gil-Kashiwabara, E. Gender matters in transition to adulthood: A survey study of adolescents with disabilities and their families. Psychology in the Schools. 2008;45(4):349–364.

134. Rivers, J.W., Stoneman, Z. Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental Disorders. 2003;33(4):383–394.

135. Rogoff, B. The cultural nature of human development. New York: Oxford University Press, 2003.

136. Sameroff, A.J., Fiese, B.H. Transactional regulation: The developmental ecology of early intervention. In: Shonkoff J.P., Meisels S.J., eds. Handbook of early childhood intervention. 2nd ed. New York: Cambridge University Press; 2000:135–159.

137. Schimoeller, G.L., Baranowski, M.D. Intergenerational support in families with disabilities: Grandparents’ perspective. Families in Society: The Journal of Contemporary Human Services. 1998;79:465–476.

138. Schteingart, J.S., Molnar, J., Klein, T.P., Lowe, C.B., Hartmann, A.H. Homelessness and child functioning in the context of risk and protective factors moderating child outcomes. Journal of Clinical Child Psychology. 1995;24:320–331.

139. Schultz-Krohn, W. Meaningful family routines in a homeless shelter. American Journal of Occupational Therapy. 2004;58(5):531–542.

140. Schulz, J.B. The parent-professional conflict. In: Turnbull H.R., Turnbull A.P., eds. Parents speak out: Then and now. 2nd ed. Columbus, OH: Merrill; 1985:3–22.

141. Seccombe, K., James, D., Walters, K.B. They think you ain’t much of nothing”: The social construction of the welfare mother. Journal of Marriage and the Family. 1998;60:849–865.

142. Segal, R. Adaptive strategies of mothers with children with ADHD: Enfolding and unfolding occupations. American Journal of Occupational Therapy. 2000;54:300–306.

143. Segal, R. Family routines and rituals: A context for occupational therapy interventions. American Journal of Occupational Therapy. 2004;58(5):499–508.

144. Segal, R., Beyer, C. Integration and application of a home treatment program: A study of parents and occupational therapists. American Journal of Occupational Therapy. 2006;60(5):500–510.

145. Segal, R., Hinojosa, J. The activity setting of homework: An analysis of three cases and implications for occupational therapy. American Journal of Occupational Therapy. 2006;60(1):50–59.

146. Shonkoff, J.P., Phillips, D.A. From neurons to neighborhoods: The science of early childhood development. Washington, DC: National Academy Press, 2000.

147. Skogrand, L., Shirer, K., Working with low-resource and culturally diverse audiences. The Forum for Family and Consumer Issues, 2007;12(1). Retrieved March 25, 2008, from, http://ncsu.edu/ffci/publications/2007/v12-n1–2007-spring/skogrand-shirer/fa-9-skogrand-shirer.php.

148. Smith, L.K., Draper, E.S., Manktelow, B.N., Dorling, J.S., Field, D.J. Socioeconomic inequalities in very preterm birth rates. Archives of Disease in Childhood—Fetal and Neonatal Edition. 2007;92:F11–F14.

149. Spagnola, M., Fiese, B.H. Family routines and rituals: A context for development in the lives of young children. Infants & Young Children. 2007;20(4):284–299.

150. Spratt, E.G., Saylor, C.F., Macias, M.M. Assessing parenting stress in multiple samples of children with special needs (CSN). Families, Systems, & Health. 2007;25(4):435–449.

151. Stacey, J., Biblarz, T.J. How does the sexual orientation of parents matter. American Sociological Review. 2001;66:159–183.

152. Steinberg, L., Silk, J.S., Parenting adolescents. Bornstein, M.H., eds. Handbook of parenting, 2nd ed., Vol. 1. Mahwah, NJ: Lawrence Erlbaum, 2002;103–133.

153. Stewart, D., Law, M., Burke-Gaffney, J., Missiuma, C., Rosenbaum, P., King, G., et al. Keeping It Together™: An information KIT for parents of children and youth with special needs. Child: Care, Health & Development. 2006;32:493–500.

154. Stoneman, Z. Supporting positive sibling relationships during childhood. Mental Retardation and Developmental Disabilities Research Reviews. 2001;7:134–142.

155. Suarez-Orozco, C., Todorova, L.G., Louie, J. Making up for lost time: The experiences of separation and reunification among immigrant families. Family Process. 2002;41:625–643.

156. Summers, J.A., Dell’Oliver, C., Turnbull, A.P., Benson, H., Santelli, E., Campbell, M., et al. Examining the individualized family service plan process: What are family and practitioner preferences. Topics in Early Childhood Special Education. 1990;10(2):78–99.

157. Tetreault, S., Parrot, A., Trahan, J. Home activity programs in families with children presenting with global developmental delays: Evaluation and parental perceptions. International Journal of Rehabilitation Research. 2003;26:165–173.

158. Trent-Stainbrook, A., Kaiser, A.P., Frey, J.R. Older siblings’ use of responsive interaction strategies and effects on their younger siblings with Down syndrome. Journal of Early Intervention. 2007;29(4):273–286.

159. Trivette, C.M., Dunst, C.J. DEC recommended practices: Family-based practices. In: Sandall S., Hemmeter M.L., Smith B.J., McLean M.E., eds. DEC recommended practices: A comprehensive guide for practical application in early intervention/early childhood special education. Missoula, MT: Division for Early Childhood; 2005:107–126.

160. Turnbull, A.P., Blue-Banning, M., Turbiville, V., Park, J. From parent education to partnership education: A call for a transformed focus. Topics in Early Childhood Education. 1999;19:164–172.

161. Turnbull, A.P., Ruef, M. Family perspectives on inclusive lifestyle issues for people with problem behavior. Exceptional Children. 1997;63:211–227.

162. Turnbull, A.P., Summers, J.A., Turnbull, R., Brotherson, M.J., Winton, P., Roberts, et al. Family supports and services in early intervention: A bold vision. Journal of Early Intervention. 2007;29(3):187–206.

163. Turnbull, A.P., Turbiville, V., Turnbull, H.R. Evolution of family-professional partnerships: Collective empowerment as the model for the early twenty-first century. In: Shonkoff J.P., Meisels S.J., eds. Handbook of early childhood intervention. 2nd ed. New York: Cambridge University Press; 2002:630–650.

164. Turnbull, A.P., Turnbull, H.R. Families, professions and exceptionality: A special partnership. Columbus, OH: Merrill, 1990;156–157.

165. Turnbull, A.P., Turnbull, H.R. Families, professionals, and exceptionality: A special partnership, 3rd ed. Columbus, OH: Merrill, 1997.

166. Turnbull, A., Turnbull, R., Erwin, E.J., Soodak, L.C. Families, professionals, and exceptionality: Positive outcomes through partnerships and trust, 5th ed. Columbus, OH: Merrill, 2006.

167. Tymchuk, A.J., Andron, L., Unger, O. Parents with mental handicaps and adequate child care: A review. Mental Handicap. 1987;15:49–54.

168. U.S. Bureau of the Census, 169. America’s families and living arrangements: Population characteristics. U.S. Department of Commerce Economics and Statistics Administration, 2002. www.census.gov. [Retrieved August 2003 from].

169. Valencia, L.S., Cromer, B.A. Sexual activity and other high-risk behaviors in adolescents with chronic illness: A review. Journal of Pediatric and Adolescent Gynecology. 2000;13:53–64.

170. VanLeit, B., Crowe, T.K. Outcomes of an occupational therapy program for mothers of children with disabilities: Impact on satisfaction with time use and occupational performance. American Journal of Occupational Therapy. 2002;56:402–410.

171. Wacharasin, C., Barnard, K.E., Spieker, S.J. Factors affecting toddler cognitive development in low-income families: Implications for practitioners. Infants and Young Children. 2003;16:175–187.

172. Walker, S. Culturally competent protection of children’s mental health. Child Abuse. Review. 2002;11:380–393.

173. Wall, S., Kisker, E.E., Peterson, C.A., Carta, J.J., Jeon, H. Child care for low-income children with disabilities: Access, quality, and parental satisfaction. Journal of Early Intervention. 2006;28(4):283–298.

174. Walsh, F. A family resilience framework: Innovative practice applications. Family Relations. 2002;51:130–137.

175. Walsh, F. Normal family processes: Growing diversity and complexity, 3rd ed. New York: Guilford Press, 2003.

176. Weiss, K.L., Marvin, R.S., Pianta, R.C. Ethnographic detection and description of family strategies for child care: Application to the study of cerebral palsy. Journal of Pediatric Psychology. 1997;22:263–278.

177. Williams, L. The many roles of families in family-centered care—Part III. Pediatric Nursing. 2007;33(2):144–146.

178. Williams, P.D., Williams, A.R., Graff, J.C., Hanson, S., Stanton, A., Hafeman, C., et al. Interrelationships among variables affecting well siblings and mothers in families of children with chronic illness or disability. Journal of Behavioral Medicine. 2002;25:411–424.

179. Young, D.M., Roopnarine, J.L. Fathers’ childcare involvement with children with and without disabilities. Topics in Early Childhood Special Education. 1994;14(4):488–502.