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Supporting Families of Children With Disabilities Cheryl Riley and Lori Baas Rubarth
Correspondence Cheryl Riley, DNP, APRN, NNP-BC, 3820 Blanco Creek Tr., McKinney, TX 75070. [email protected] Keywords infants children with disabilities family coping strategies siblings community recourses early literacy Head Start mother positivity support groups
Cheryl Riley, DNP, APRN, NNP-BC, is a clinical assistant professor, Louise Herrington School of Nursing, Baylor University, Dallas, TX. Lori Baas Rubarth, PhD, APRN, NNP-BC, is an associate professor, College of Nursing, Creighton University, Omaha, NE.
ABSTRACT Advanced technology combined with improvements in neonatal care have increased the survival rates of low-birth-weight infants and infants born with severe birth defects. These infants are at greater risk for long-term health and developmental problems. The effect of having a child with a disability on the family is described, and emerging interventions and resources available for these families are provided.
JOGNN, 44, 536-542; 2015. DOI: 10.1111/1552-6909.12660 Accepted February 2015
dvances in technology and neonatal care have increased the survival rate of premature infants, especially those born at very-low birth weights and infants born with severe birth defects (Reichman, Corman, & Noonan, 2008). In 2010, approximately 500,000 infants were born preterm. Due to the American with Disabilities Act and the Individual with Disabilities Education Act (IDEA), the number of children with disabilities living at home has doubled since 1960. In addition, these changes in governmental policy have affected the number of children with disabilities living at home and attending school (Reichman et al., 2008; Wall et al., 2005).
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toll on the well-being of families (Xu, Kochanek, Murphy, & Arias, 2014). Infants born with birth defects have abnormalities of structure, function, or metabolism that result in physical or mental disability or death (Parker et al., 2010). According to the March of Dimes (2015), disabilities such as cardiac anomalies, cerebral palsy, and Down syndrome affect 120,000 infants each year. One out of every five deaths in the first year of life is caused by a birth defect, and if the infant survives it may experience lifelong problems with infections, physical movement, learning, and speech (Centers for Disease Control and Prevention, 2008).
The authors report no conflict of interest or relevant financial relationships.
Premature infants born at fewer than 38-weeks gestation have a greater risk of dying within the first few weeks of life than infants born at term, and according to Doyle (2011), “If they survive, they have a greater risk of neurological impairments, blindness, deafness, or cognitive dysfunction (either developmental delay, or intellectual impairment) and a greater risk of substantial disability as a result of these neurological impairments” (p. 3). For those infants who live beyond the first few weeks after birth, annually in the United States, approximately 28,000 infants will die within the first year of life (MacDorman & Mathews, 2008). The loss of an infant takes a serious
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The Diagnosis When parents learn that a child may be born prematurely or may have a birth defect, the experience during pregnancy changes from hopeful expectation to fear, which creates stress for the parents (Doyle, 2011). While some disorders are diagnosed shortly after birth, others may take a year or longer to diagnose (Glidden, Billings, & Jobe, 2006). Cerebral palsy (CP) and autism are examples of diagnoses that would not be evident in the newborn period. Parents who discover birth defects during pregnancy can develop more
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effective coping strategies than parents who discover the diagnosis months later (Glidden et al., 2006). After diagnosis, a multidisciplinary approach to care is needed. Multidisciplinary teams comprising physicians, geneticists, nurses, pharmacists, nutritionists, social workers, and occupational therapists are required to support the family and should be involved in patient care conferences. It is imperative when planning these meetings to recognize and acknowledge the stress and fear of the parents during difficult conversations regarding the care of their infants (Izatt, 2008). These conferences usually focus on the initiation and continuation of care and delivering unfavorable news regarding diagnosis and prognosis for the infant or child (Izatt, 2008). Additional factors that should be taken into consideration by the multidisciplinary team include potential language barriers and cultural diversity (Izatt, 2008). A communication tool developed for oncology patient that is useful for conveying unfavorable information is the SPIKES protocol (setting, perception, invitation, knowledge, empathy, strategy, and summary). This tool provides a framework that can be applied across specialties and follows six steps during difficult conversations with parents: (a) preparing for the family meeting, (b) assessing the family’s understanding of the situation, (c) delivering the information, (d) responding to the family’s emotions, (e) discussing the implications and future directions, and (f) summarizing the discussion. Often, parents have a difficult time processing all information they receive in these meetings, so following these steps provides the family with the information at the pace that allows for the assimilation of information. Nurses are ideally positioned to reinforce and clarify any information not completely understood following the meeting (Buckman, 2005; Izatt, 2008).
The Family Having a child with a disability can have a significant effect on the entire family. Researchers prior to the 1980s assumed that families with children with disabilities were dysfunctional and continued to grieve the loss of the perfect child (Lightsey & Sweeney, 2008). Recently, researchers have shown that though parents do experience grief, shock, and hopelessness at the initial diagnosis, these emotions do not predict the ability of the family to adjust and cope (Lightsey & Sweeney, 2008). Trute, Benzies, and Worthington (2012)
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When parents learn a child may be born prematurely or may have a birth defect, the experience during pregnancy changes from hopeful expectation to fear.
evaluated the positive effects of having a child with a disability on the family and found that many parents responded with positive coping and resiliency. It is common for parents raising a child with a disability, much like parents of normal children, to experience joy and sadness (Trute et al., 2012). Parents of children with disabilities who thrive or flourish have been found to utilize internal and external resources and support systems (Krstic´ & Oros, 2012). Internal resources are within the family or the parents themselves. These resources can include personality strengths or learned responses in difficult situations. Reframing priorities is a method used by parents to reevaluate the situation from a different perspective. Reframing is one of the coping strategies most often used by parents of a child with a disability (Krstic´ & Oros, 2012). Researchers have shown that the parents’ ability to cope influences family time, routines, respite care, care coordination, family satisfaction, and cohesion (Giallo & Gavidia-Payne, 2006). Families with effective communication and problem solving skills demonstrated an increased ability to deal with stressful situations (Giallo & Gavidia-Payne, 2006). Baker, Blacher, and Olsson (2005) indicated that the characteristics associated with the diagnosis, such as behavior or temperament rather than the diagnosis itself, may be key in predicting stress and negative family adjustment. Emotional support for parents leads to improved adjustment within the family. Parents who see the positive aspects of the disability can often counterbalance some of the negative effects of the stressful situation (Trute et al., 2012). Stress without support can lead to depression, anger, anxiety, substance abuse, or child abuse. Developing connections with other parents in similar situations can also diminish some of the negative consequences. The ability to cope with negative life events often involves finding meaning through the positive benefits and personal growth the life event has caused. Many factors affect the ability of families to cope. Parents, especially mothers, can find the role of parenting a child with a disability rewarding and difficult (Willingham-Storr, 2014).
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Parents who see the positive aspects of the child’s disability can often counterbalance some of the negative effects of the stressful situation.
The Mother and the Father Hastings et al. (2005) reported that mothers and fathers have different needs and react differently when faced with a child with a disability. In a literature review, Neely-Barnes and Dia (2008) demonstrated that mothers have greater stress, caregiver burden, and depression than fathers. Interestingly, the researchers observed that mothers and fathers differed in what contributes to their stress. They found that mothers were more affected by family harmony, lower socioeconomic status, and greater care demands. Mothers also reported more positive perceptions of caregiving than fathers (Neely-Barnes & Dia, 2008). The mother’s ability to discover the positive aspects of having a child with a disability was significant predictor on overall family adjustment (Trute, Benzies, Worthington, Reddon, & Moore, 2010). Fathers, on the other hand, reported more concern for their child with a disability with regards to achievement, self-esteem, learning difficulties, and potential for bullying (Neely-Barnes & Dia, 2008). These factors also had a significant effect on the father’s stress and family satisfaction (Duchovic, Gerkensmeyer, & Wu, 2009). Although not all fathers reported increased stress, those who did viewed their children as less acceptable, demanding, and moody. Perceived attitudes of others affected fathers more than mothers. Fathers were more susceptible to negative views of others and relied more on spousal support and their own strengths rather than outside sources (MacDonald & Hastings, 2010). When fathers do not communicate their concerns to their spouses or support persons, barriers may be created and affect overall family satisfaction. Additional areas of stress for the father include increased burdens, responsibilities, and competing demands for time and resources (Darling, Senatore, & Strachan, 2012).
Researchers have reported conflicting data on the effectiveness of peer support groups for sibling adjustment. These conflicting results may be due to sampling bias, that is, siblings participating in support groups might already be experiencing poor or negative adjustment (Giallo & Gavidia-Payne, 2006; Naylor & Prescott, 2004; Neely-Barnes & Dia, 2008). In families with poor resources the family environment may be increasingly stressful and can increase the risk of adjustment problems. Naylor and Prescott (2004) noted that siblings might experience less attention from parents and have greater responsibilities in the home that often lead to less participation in outside activities and fewer friends. The authors stressed the importance of parents listening to their child or children without disabilities and recognizing that all family members had the right to be heard. Creating a safe environment and empowering these children will contribute to their overall adjustment.
Grandparents Grandparents have become a growing population of caregivers for children with disabilities. These caregivers are predominately African American and Latino females, in their late fifties, with some high school education (Neely-Barnes & Dia, 2008). Parental abuse and neglect are the most common reason that grandparents become custodian caregivers. Other reasons for nonparent custodial situations include teen mothers who cannot care for their children, homelessness, poverty, imprisonment, and drug abuse (Neely-Barnes & Dia, 2008).
Children who have siblings with disabilities adjust in different and diverse ways (Naylor & Prescott, 2004). A problem with past research has been the evaluation of the sibling in isolation with little consideration of the contextual factors of the family and the community (Dyson, 1998). In a study by Giallo and Gavidia-Payne (2006), siblings of
Custodial grandparents of children with disabilities have unique needs (McCallion, Janicki, Grant-Griffin, & Kolomer, 2000). One major issue is informal guardianship. Often grandparents have physical custody but not legal custody of the child. This situation results in difficulty utilizing school, state, and federal resources. Another unique need is the significant financial burden of raising a child with a disability. Grandparents may not have adequate disposable income if emergency cash is required. The ability to utilize Medicaid is also more difficult when a noncustodial caregiver has physical custody. Additionally, this aging population may find time away from the child with a disability in the form of respite care very difficult.
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children with disabilities displayed more internalizing behaviors; however, parent stress and family resilience factors were predictive of adjustment problems in siblings.
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Another tangible burden in this population that grandparents worry about the child’s welfare after their deaths (McCallion et al., 2000). While hardships are evident for grandparents, positive effects of grand parenting such as greater love, a meaningful experience with care giving, and personal growth are attained (Neely-Barnes & Dia, 2008). An overarching theme is how the grandparents view the care giving experience. If it is viewed as positive, grandparents cope better and experience less stress and depression.
Available Resources A paramount resource needed for families with a child with a disability is access to health care. These children require high-quality primary care and in many cases need multifaceted specialized care on a long-term basis (American Academy of Pediatrics [AAP], 2002).
The Medical Home A medical home is partnership between the patient, the family, the health care team, the specialists, and the community. According to the AAP (2002), a medical home is not a building or a place but an approach to providing comprehensive primary care that facilitates partnerships between patients, providers, nurses, medical staff, and families. A primary care physician, a nurse practitioner, or a key practitioner related to the special needs of the child can direct the health care team. The family is at the center of this model of care and the medical home is built around it. The AAP defined the crucial characteristics of a medical home as accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. The concept of the medical home is the promotion of information exchange, enhancement of the quality of care, and minimization of fragmentation that often leads to poor outcomes, decreased satisfaction, and greater costs. This model helps families with children with disabilities to coordinate all care required to meet the special needs of the child (Adams, Tapia, & The Council on Children with Disabilities, 2013; AAP, 2002). Not all communities have medical homes and finding one that meets the needs of the family can be difficult. Nurses can have an important role in helping families find providers and medical homes that meet their individual needs.
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Early Childhood Intervention Children with disabilities require early intervention programs for physical, developmental, and emotional rehabilitation (Wall et al., 2005). The IDEA necessitates that states have Early Childhood Intervention (ECI) programs that provide services to children with disabilities and their families. This act also requires school districts to provide handicapped preschool programs that begin when the child is age 3 and a free education in the least restrictive environment when a child reaches school age (Adams et al., 2013; Wall et al., 2005). According to the Texas Department of Assistive and Rehabilitative Services (TDARS; 2014), ECI provides evaluation of children, from birth to age 3, at no cost to the family. To determine eligibility, a child must have a medical diagnosis with a high probability of having a developmental delay. Once eligibility is established, families and ECI professionals work together to plan appropriate services based on the unique strengths and needs of the child and family. These services include ECI specialists, speech and language pathologists, physical and occupational therapists, psychologists, registered nurses, dietitians, social workers, and counselors. A case manager helps the family access and receive services to support the child’s development. This care can be given in the home or at a location chosen by the family. The treatment is family centered, and the ECI professionals and the family work together to incorporate daily activities that promote the child’s development (Reichman et al., 2008; TDARS, 2014; Wall et al., 2005). Approximately 6 months prior to the child’s third birthday, the ECI case manager and the family address issues concerning the transition to public school, preschool, Head Start, day care, or other community services. The goal is for a smooth transition without a gap in care (TDARS, 2014). Unfortunately, not all school districts offer the same quality and quantity of services for children with disabilities. Therefore, it is vital for families to research specific school districts to determine the services offered. It is not uncommon for families to relocate to school districts that offer superior services (Reichman et al., 2008; TDARS, 2014).
Early Head Start Early Head Start (EHS), a program under Department of Health and Human Services, provides grants to public and private agencies to provide ECI and preschool programs with the goal of
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According to the American Academy of Pediatrics the medical home must be accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.
increasing school readiness in low-income families with children as old as age 5 (Wall et al., 2005). At least 10% of the children enrolled in EHS must be eligible for ECI under the IDEA guidelines. This program was initially developed as a catch-up summer program designed for lowincome children. The goal was to prepare these children to start elementary school. It has continued to expand and is now one of the longest running programs that addresses systemic poverty in the United States (Adams et al., 2013; Wall et al., 2005).
Nursing Implications
Contact with other parents who have successfully adapted through similar experiences is a valuable source of information, hope, advice, and support to new parents (Gooding et al., 2011). Nurses must provide parents with information on how to connect with other parents in similar situations. Some examples include parent education hours, parent support groups, and activities such as scrap booking. These support groups give parents a safe and supportive place to share feelings and concerns and receive advice (Gooding et al., 2011). Prior to discharge, parents should be provided with referrals to local support groups, ECI, developmental follow-up clinics, local advocacy groups, and national organizations that focus on the specific disability. Important web sites to share with parents include the National Dissemination Center for Children with Disabilities and the Parent Advocacy Coalition for Education Rights, which provide a comprehensive list of services (Gooding et al., 2011; Spratt et al., 2007).
To address the complex needs of children with disabilities, parents must coordinate care through many differing and often disjointed public and private health care institutions (Reichman et al., 2008). This type of coordination is a challenge in the best of circumstances, and often no single source of information is available for parents. Sadly, if the family does not have a definitive diagnosis for the child, it difficult to qualify for benefits (Reichman et al., 2008). Nurses in clinical practice should be aware of the complex needs existing within these families even before the child’s diagnosis.
Nurses working in the community can assist families that have a child with a disability (Yildirim, ˘ As¸ilar, & Karakurt, 2012). CommuHacihasanoglu nity nurses are able to truly get to know the child and family, which results in a heightened ability to access any difficulties the family may be having and determine necessary interventions. Education by nurses has been shown to increase mother’s knowledge, enable superior interaction with the child, and promote the ability to develop and utilize enhanced coping mechanism (Yildirim et al., 2012).
Frequently parents know from birth that their child may have a disability. Therefore, nurses need to assist parents to adapt during the birth hospitalization, whether in the newborn nursery or in the neonatal intensive care unit (NICU). Nurses must address the family’s expectations and often are required to help parents be more positive about potential outcomes (Spratt, Saylor, & Macias, 2007). Nurses help facilitate parent interaction with the infant while still in the NICU by allowing parents to
Parents of children with disabilities have expressed the importance of being heard, and nurses play a vital role in parental satisfaction (O’Connell, O’Halloran, & Doody, 2013). Nurses are able listen and focus on the parent’s and the child’s needs and help them obtain the resources they need. Supporting the parents is essential in the care of children with disabilities. Parents must be reassured that coping difficulties occur in all families and not just in those with children that
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The EHS program recognizes how intimidating it can be for a low-income family to initiate contact with ECI services. The program also acknowledge how difficult it can be for the family to understand the special developmental needs of the child and appreciate the difference ECI can make. Due to these issues, EHS created many resources, including nursing resources, to assist families to navigate the system (Wall et al., 2005).
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be involved in direct care. Parents can be taught to read the infant’s cues and how to hold and bathe the infant. Allowing parents to change diapers, take temperatures, and participate in kangaroo care helps them bond with the infant and allows them to identify the infant’s positive characteristics (Gooding et al., 2011). Explaining the daily plan of care to parents and involving them in patient rounds will keep them informed and will help to build trusting relationships.
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have disabilities. This can encourage parents to reach out for help and support.
Duchovic, C. A., Gerkensmeyer, J. E., & Wu, J. (2009). Factors associated with parental distress. Child and Adolescent Psychiatric Nursing, 22, 40–48. Dyson, L. (1998). A support program for siblings of children with disabilities: What siblings learn and what they like. Psychology in
Conclusion Families with children with disabilities face numerous complex issues. Parents may find it overwhelming to become advocates, access quality primary care, organize specialist appointments, deal with daily stresses, care for other siblings, work, and maintain spousal relationships. Advocacy for coordinated care by nurse leaders is needed to improve the fragmented heath care system. Family members of children with disabilities are at high risk for developing depression, becoming isolated, and having poor coping skills (Giallo & Gavidia-Payne, 2006). Nurses are in an ideal position to intervene for families with children from birth through school age. Nurses often help parents reframe their expectations and find positive aspects of caring for a child with disabilities. This can turn a difficult situation into a rewarding experience for the nurse and the family. Additional research is needed to explore the effect of the positive attitude of the caregiver on family coping (Neely-Barnes & Dia, 2008). More data are needed related to the unique needs and differences in the ability to cope between mothers, fathers, and grandparents (Neely-Barnes & Dia, 2008). Helping families to find the resources they need and to navigate the system and simply listening to them can greatly alter their ability to enjoy life.
the Schools, 35(1), 57–65. Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50(12), 937– 948. Glidden, L. M., Billings, F. J., & Jobe, B. M. (2006). Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 50(12), 949–962. Gooding, J., Cooper, L., Blaine, A., Franck, L., Howse, J., & Berns, S. (2011). Family support and family-centered care in the neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology, 35(1), 20–28. Hastings, R., Kovshoff, H., Ward, N., Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre- school children with autism. Journal of Autism and Developmental Disorders, 35, 635–644. Izatt, S. (2008). Educational perspectives: Difficult conversations in the neonatal intensive care unit. NeoReviews, 9(8), 321–325. ´ T., & Oros, M. (2012). Coping with stress and adaptation in mothKrstic, ers of children with cerebral palsy. Medicinski Pregled, 65(9-10), 373–377. Lightsey, O., & Sweeney, J. (2008). Meaning in life, emotion-oriented coping, generalized self-efficacy, and family cohesion as predictors of family satisfaction among mothers of children with disabilities, Family Journal: Counseling and Therapy for Couples and Families, 16(3), 212–221. MacDonald, E., & Hastings, R. (2010). Mindful parenting and care involvements of fathers of children with intellectual disabilities. Journal of Child and Family Studies, 19, 236–240. MacDorman, M., & Mathews, T. (2008). Recent trends in infant mortality in the United States (NCHS data brief, no. 9). Hyattsville, MD: National Center for Health Statistics. Retrieved from http://www.cdc.gov/nchs/data/databriefs/db09.htm March
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children. Journal of Clinical Nursing, 22, 251–261.
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Supporting Families of Children With Disabilities Cheryl Riley and Lori Baas Rubarth
Correspondence Cheryl Riley, DNP, APRN, NNP-BC, 3820 Blanco Creek Tr., McKinney, TX 75070. [email protected] Keywords infants children with disabilities family coping strategies siblings community recourses early literacy Head Start mother positivity support groups
Cheryl Riley, DNP, APRN, NNP-BC, is a clinical assistant professor, Louise Herrington School of Nursing, Baylor University, Dallas, TX. Lori Baas Rubarth, PhD, APRN, NNP-BC, is an associate professor, College of Nursing, Creighton University, Omaha, NE.
ABSTRACT Advanced technology combined with improvements in neonatal care have increased the survival rates of low-birth-weight infants and infants born with severe birth defects. These infants are at greater risk for long-term health and developmental problems. The effect of having a child with a disability on the family is described, and emerging interventions and resources available for these families are provided.
JOGNN, 44, 536-542; 2015. DOI: 10.1111/1552-6909.12660 Accepted February 2015
dvances in technology and neonatal care have increased the survival rate of premature infants, especially those born at very-low birth weights and infants born with severe birth defects (Reichman, Corman, & Noonan, 2008). In 2010, approximately 500,000 infants were born preterm. Due to the American with Disabilities Act and the Individual with Disabilities Education Act (IDEA), the number of children with disabilities living at home has doubled since 1960. In addition, these changes in governmental policy have affected the number of children with disabilities living at home and attending school (Reichman et al., 2008; Wall et al., 2005).
A
toll on the well-being of families (Xu, Kochanek, Murphy, & Arias, 2014). Infants born with birth defects have abnormalities of structure, function, or metabolism that result in physical or mental disability or death (Parker et al., 2010). According to the March of Dimes (2015), disabilities such as cardiac anomalies, cerebral palsy, and Down syndrome affect 120,000 infants each year. One out of every five deaths in the first year of life is caused by a birth defect, and if the infant survives it may experience lifelong problems with infections, physical movement, learning, and speech (Centers for Disease Control and Prevention, 2008).
The authors report no conflict of interest or relevant financial relationships.
Premature infants born at fewer than 38-weeks gestation have a greater risk of dying within the first few weeks of life than infants born at term, and according to Doyle (2011), “If they survive, they have a greater risk of neurological impairments, blindness, deafness, or cognitive dysfunction (either developmental delay, or intellectual impairment) and a greater risk of substantial disability as a result of these neurological impairments” (p. 3). For those infants who live beyond the first few weeks after birth, annually in the United States, approximately 28,000 infants will die within the first year of life (MacDorman & Mathews, 2008). The loss of an infant takes a serious
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The Diagnosis When parents learn that a child may be born prematurely or may have a birth defect, the experience during pregnancy changes from hopeful expectation to fear, which creates stress for the parents (Doyle, 2011). While some disorders are diagnosed shortly after birth, others may take a year or longer to diagnose (Glidden, Billings, & Jobe, 2006). Cerebral palsy (CP) and autism are examples of diagnoses that would not be evident in the newborn period. Parents who discover birth defects during pregnancy can develop more
http://jognn.awhonn.org
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effective coping strategies than parents who discover the diagnosis months later (Glidden et al., 2006). After diagnosis, a multidisciplinary approach to care is needed. Multidisciplinary teams comprising physicians, geneticists, nurses, pharmacists, nutritionists, social workers, and occupational therapists are required to support the family and should be involved in patient care conferences. It is imperative when planning these meetings to recognize and acknowledge the stress and fear of the parents during difficult conversations regarding the care of their infants (Izatt, 2008). These conferences usually focus on the initiation and continuation of care and delivering unfavorable news regarding diagnosis and prognosis for the infant or child (Izatt, 2008). Additional factors that should be taken into consideration by the multidisciplinary team include potential language barriers and cultural diversity (Izatt, 2008). A communication tool developed for oncology patient that is useful for conveying unfavorable information is the SPIKES protocol (setting, perception, invitation, knowledge, empathy, strategy, and summary). This tool provides a framework that can be applied across specialties and follows six steps during difficult conversations with parents: (a) preparing for the family meeting, (b) assessing the family’s understanding of the situation, (c) delivering the information, (d) responding to the family’s emotions, (e) discussing the implications and future directions, and (f) summarizing the discussion. Often, parents have a difficult time processing all information they receive in these meetings, so following these steps provides the family with the information at the pace that allows for the assimilation of information. Nurses are ideally positioned to reinforce and clarify any information not completely understood following the meeting (Buckman, 2005; Izatt, 2008).
The Family Having a child with a disability can have a significant effect on the entire family. Researchers prior to the 1980s assumed that families with children with disabilities were dysfunctional and continued to grieve the loss of the perfect child (Lightsey & Sweeney, 2008). Recently, researchers have shown that though parents do experience grief, shock, and hopelessness at the initial diagnosis, these emotions do not predict the ability of the family to adjust and cope (Lightsey & Sweeney, 2008). Trute, Benzies, and Worthington (2012)
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When parents learn a child may be born prematurely or may have a birth defect, the experience during pregnancy changes from hopeful expectation to fear.
evaluated the positive effects of having a child with a disability on the family and found that many parents responded with positive coping and resiliency. It is common for parents raising a child with a disability, much like parents of normal children, to experience joy and sadness (Trute et al., 2012). Parents of children with disabilities who thrive or flourish have been found to utilize internal and external resources and support systems (Krstic´ & Oros, 2012). Internal resources are within the family or the parents themselves. These resources can include personality strengths or learned responses in difficult situations. Reframing priorities is a method used by parents to reevaluate the situation from a different perspective. Reframing is one of the coping strategies most often used by parents of a child with a disability (Krstic´ & Oros, 2012). Researchers have shown that the parents’ ability to cope influences family time, routines, respite care, care coordination, family satisfaction, and cohesion (Giallo & Gavidia-Payne, 2006). Families with effective communication and problem solving skills demonstrated an increased ability to deal with stressful situations (Giallo & Gavidia-Payne, 2006). Baker, Blacher, and Olsson (2005) indicated that the characteristics associated with the diagnosis, such as behavior or temperament rather than the diagnosis itself, may be key in predicting stress and negative family adjustment. Emotional support for parents leads to improved adjustment within the family. Parents who see the positive aspects of the disability can often counterbalance some of the negative effects of the stressful situation (Trute et al., 2012). Stress without support can lead to depression, anger, anxiety, substance abuse, or child abuse. Developing connections with other parents in similar situations can also diminish some of the negative consequences. The ability to cope with negative life events often involves finding meaning through the positive benefits and personal growth the life event has caused. Many factors affect the ability of families to cope. Parents, especially mothers, can find the role of parenting a child with a disability rewarding and difficult (Willingham-Storr, 2014).
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Parents who see the positive aspects of the child’s disability can often counterbalance some of the negative effects of the stressful situation.
The Mother and the Father Hastings et al. (2005) reported that mothers and fathers have different needs and react differently when faced with a child with a disability. In a literature review, Neely-Barnes and Dia (2008) demonstrated that mothers have greater stress, caregiver burden, and depression than fathers. Interestingly, the researchers observed that mothers and fathers differed in what contributes to their stress. They found that mothers were more affected by family harmony, lower socioeconomic status, and greater care demands. Mothers also reported more positive perceptions of caregiving than fathers (Neely-Barnes & Dia, 2008). The mother’s ability to discover the positive aspects of having a child with a disability was significant predictor on overall family adjustment (Trute, Benzies, Worthington, Reddon, & Moore, 2010). Fathers, on the other hand, reported more concern for their child with a disability with regards to achievement, self-esteem, learning difficulties, and potential for bullying (Neely-Barnes & Dia, 2008). These factors also had a significant effect on the father’s stress and family satisfaction (Duchovic, Gerkensmeyer, & Wu, 2009). Although not all fathers reported increased stress, those who did viewed their children as less acceptable, demanding, and moody. Perceived attitudes of others affected fathers more than mothers. Fathers were more susceptible to negative views of others and relied more on spousal support and their own strengths rather than outside sources (MacDonald & Hastings, 2010). When fathers do not communicate their concerns to their spouses or support persons, barriers may be created and affect overall family satisfaction. Additional areas of stress for the father include increased burdens, responsibilities, and competing demands for time and resources (Darling, Senatore, & Strachan, 2012).
Researchers have reported conflicting data on the effectiveness of peer support groups for sibling adjustment. These conflicting results may be due to sampling bias, that is, siblings participating in support groups might already be experiencing poor or negative adjustment (Giallo & Gavidia-Payne, 2006; Naylor & Prescott, 2004; Neely-Barnes & Dia, 2008). In families with poor resources the family environment may be increasingly stressful and can increase the risk of adjustment problems. Naylor and Prescott (2004) noted that siblings might experience less attention from parents and have greater responsibilities in the home that often lead to less participation in outside activities and fewer friends. The authors stressed the importance of parents listening to their child or children without disabilities and recognizing that all family members had the right to be heard. Creating a safe environment and empowering these children will contribute to their overall adjustment.
Grandparents Grandparents have become a growing population of caregivers for children with disabilities. These caregivers are predominately African American and Latino females, in their late fifties, with some high school education (Neely-Barnes & Dia, 2008). Parental abuse and neglect are the most common reason that grandparents become custodian caregivers. Other reasons for nonparent custodial situations include teen mothers who cannot care for their children, homelessness, poverty, imprisonment, and drug abuse (Neely-Barnes & Dia, 2008).
Children who have siblings with disabilities adjust in different and diverse ways (Naylor & Prescott, 2004). A problem with past research has been the evaluation of the sibling in isolation with little consideration of the contextual factors of the family and the community (Dyson, 1998). In a study by Giallo and Gavidia-Payne (2006), siblings of
Custodial grandparents of children with disabilities have unique needs (McCallion, Janicki, Grant-Griffin, & Kolomer, 2000). One major issue is informal guardianship. Often grandparents have physical custody but not legal custody of the child. This situation results in difficulty utilizing school, state, and federal resources. Another unique need is the significant financial burden of raising a child with a disability. Grandparents may not have adequate disposable income if emergency cash is required. The ability to utilize Medicaid is also more difficult when a noncustodial caregiver has physical custody. Additionally, this aging population may find time away from the child with a disability in the form of respite care very difficult.
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children with disabilities displayed more internalizing behaviors; however, parent stress and family resilience factors were predictive of adjustment problems in siblings.
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Another tangible burden in this population that grandparents worry about the child’s welfare after their deaths (McCallion et al., 2000). While hardships are evident for grandparents, positive effects of grand parenting such as greater love, a meaningful experience with care giving, and personal growth are attained (Neely-Barnes & Dia, 2008). An overarching theme is how the grandparents view the care giving experience. If it is viewed as positive, grandparents cope better and experience less stress and depression.
Available Resources A paramount resource needed for families with a child with a disability is access to health care. These children require high-quality primary care and in many cases need multifaceted specialized care on a long-term basis (American Academy of Pediatrics [AAP], 2002).
The Medical Home A medical home is partnership between the patient, the family, the health care team, the specialists, and the community. According to the AAP (2002), a medical home is not a building or a place but an approach to providing comprehensive primary care that facilitates partnerships between patients, providers, nurses, medical staff, and families. A primary care physician, a nurse practitioner, or a key practitioner related to the special needs of the child can direct the health care team. The family is at the center of this model of care and the medical home is built around it. The AAP defined the crucial characteristics of a medical home as accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. The concept of the medical home is the promotion of information exchange, enhancement of the quality of care, and minimization of fragmentation that often leads to poor outcomes, decreased satisfaction, and greater costs. This model helps families with children with disabilities to coordinate all care required to meet the special needs of the child (Adams, Tapia, & The Council on Children with Disabilities, 2013; AAP, 2002). Not all communities have medical homes and finding one that meets the needs of the family can be difficult. Nurses can have an important role in helping families find providers and medical homes that meet their individual needs.
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Early Childhood Intervention Children with disabilities require early intervention programs for physical, developmental, and emotional rehabilitation (Wall et al., 2005). The IDEA necessitates that states have Early Childhood Intervention (ECI) programs that provide services to children with disabilities and their families. This act also requires school districts to provide handicapped preschool programs that begin when the child is age 3 and a free education in the least restrictive environment when a child reaches school age (Adams et al., 2013; Wall et al., 2005). According to the Texas Department of Assistive and Rehabilitative Services (TDARS; 2014), ECI provides evaluation of children, from birth to age 3, at no cost to the family. To determine eligibility, a child must have a medical diagnosis with a high probability of having a developmental delay. Once eligibility is established, families and ECI professionals work together to plan appropriate services based on the unique strengths and needs of the child and family. These services include ECI specialists, speech and language pathologists, physical and occupational therapists, psychologists, registered nurses, dietitians, social workers, and counselors. A case manager helps the family access and receive services to support the child’s development. This care can be given in the home or at a location chosen by the family. The treatment is family centered, and the ECI professionals and the family work together to incorporate daily activities that promote the child’s development (Reichman et al., 2008; TDARS, 2014; Wall et al., 2005). Approximately 6 months prior to the child’s third birthday, the ECI case manager and the family address issues concerning the transition to public school, preschool, Head Start, day care, or other community services. The goal is for a smooth transition without a gap in care (TDARS, 2014). Unfortunately, not all school districts offer the same quality and quantity of services for children with disabilities. Therefore, it is vital for families to research specific school districts to determine the services offered. It is not uncommon for families to relocate to school districts that offer superior services (Reichman et al., 2008; TDARS, 2014).
Early Head Start Early Head Start (EHS), a program under Department of Health and Human Services, provides grants to public and private agencies to provide ECI and preschool programs with the goal of
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According to the American Academy of Pediatrics the medical home must be accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.
increasing school readiness in low-income families with children as old as age 5 (Wall et al., 2005). At least 10% of the children enrolled in EHS must be eligible for ECI under the IDEA guidelines. This program was initially developed as a catch-up summer program designed for lowincome children. The goal was to prepare these children to start elementary school. It has continued to expand and is now one of the longest running programs that addresses systemic poverty in the United States (Adams et al., 2013; Wall et al., 2005).
Nursing Implications
Contact with other parents who have successfully adapted through similar experiences is a valuable source of information, hope, advice, and support to new parents (Gooding et al., 2011). Nurses must provide parents with information on how to connect with other parents in similar situations. Some examples include parent education hours, parent support groups, and activities such as scrap booking. These support groups give parents a safe and supportive place to share feelings and concerns and receive advice (Gooding et al., 2011). Prior to discharge, parents should be provided with referrals to local support groups, ECI, developmental follow-up clinics, local advocacy groups, and national organizations that focus on the specific disability. Important web sites to share with parents include the National Dissemination Center for Children with Disabilities and the Parent Advocacy Coalition for Education Rights, which provide a comprehensive list of services (Gooding et al., 2011; Spratt et al., 2007).
To address the complex needs of children with disabilities, parents must coordinate care through many differing and often disjointed public and private health care institutions (Reichman et al., 2008). This type of coordination is a challenge in the best of circumstances, and often no single source of information is available for parents. Sadly, if the family does not have a definitive diagnosis for the child, it difficult to qualify for benefits (Reichman et al., 2008). Nurses in clinical practice should be aware of the complex needs existing within these families even before the child’s diagnosis.
Nurses working in the community can assist families that have a child with a disability (Yildirim, ˘ As¸ilar, & Karakurt, 2012). CommuHacihasanoglu nity nurses are able to truly get to know the child and family, which results in a heightened ability to access any difficulties the family may be having and determine necessary interventions. Education by nurses has been shown to increase mother’s knowledge, enable superior interaction with the child, and promote the ability to develop and utilize enhanced coping mechanism (Yildirim et al., 2012).
Frequently parents know from birth that their child may have a disability. Therefore, nurses need to assist parents to adapt during the birth hospitalization, whether in the newborn nursery or in the neonatal intensive care unit (NICU). Nurses must address the family’s expectations and often are required to help parents be more positive about potential outcomes (Spratt, Saylor, & Macias, 2007). Nurses help facilitate parent interaction with the infant while still in the NICU by allowing parents to
Parents of children with disabilities have expressed the importance of being heard, and nurses play a vital role in parental satisfaction (O’Connell, O’Halloran, & Doody, 2013). Nurses are able listen and focus on the parent’s and the child’s needs and help them obtain the resources they need. Supporting the parents is essential in the care of children with disabilities. Parents must be reassured that coping difficulties occur in all families and not just in those with children that
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The EHS program recognizes how intimidating it can be for a low-income family to initiate contact with ECI services. The program also acknowledge how difficult it can be for the family to understand the special developmental needs of the child and appreciate the difference ECI can make. Due to these issues, EHS created many resources, including nursing resources, to assist families to navigate the system (Wall et al., 2005).
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be involved in direct care. Parents can be taught to read the infant’s cues and how to hold and bathe the infant. Allowing parents to change diapers, take temperatures, and participate in kangaroo care helps them bond with the infant and allows them to identify the infant’s positive characteristics (Gooding et al., 2011). Explaining the daily plan of care to parents and involving them in patient rounds will keep them informed and will help to build trusting relationships.
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have disabilities. This can encourage parents to reach out for help and support.
Duchovic, C. A., Gerkensmeyer, J. E., & Wu, J. (2009). Factors associated with parental distress. Child and Adolescent Psychiatric Nursing, 22, 40–48. Dyson, L. (1998). A support program for siblings of children with disabilities: What siblings learn and what they like. Psychology in
Conclusion Families with children with disabilities face numerous complex issues. Parents may find it overwhelming to become advocates, access quality primary care, organize specialist appointments, deal with daily stresses, care for other siblings, work, and maintain spousal relationships. Advocacy for coordinated care by nurse leaders is needed to improve the fragmented heath care system. Family members of children with disabilities are at high risk for developing depression, becoming isolated, and having poor coping skills (Giallo & Gavidia-Payne, 2006). Nurses are in an ideal position to intervene for families with children from birth through school age. Nurses often help parents reframe their expectations and find positive aspects of caring for a child with disabilities. This can turn a difficult situation into a rewarding experience for the nurse and the family. Additional research is needed to explore the effect of the positive attitude of the caregiver on family coping (Neely-Barnes & Dia, 2008). More data are needed related to the unique needs and differences in the ability to cope between mothers, fathers, and grandparents (Neely-Barnes & Dia, 2008). Helping families to find the resources they need and to navigate the system and simply listening to them can greatly alter their ability to enjoy life.
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