- Email: [email protected]
Translational Research – Caregiving Challenges for Parents of Children With Rare Chronic Conditions Due to Genetic Disorders
Journal of Pediatric Nursing (2016) 31, 99–101
RESEARCH COMMENTARY DEPARTMENT Editor: Becky J. Christian PhD, RN, FNAP
Becky J. Christian, PhD, RN, FNAP
Translational Research – Caregiving Challenges for Parents of Children With Rare Chronic Conditions Due to Genetic Disorders Becky J. Christian PhD, RN, FNAP (Professor)⁎ School of Nursing, The University of Louisville, Louisville, KY Received 25 November 2015; accepted 25 November 2015
PARENTS AND FAMILIES are challenged with meeting the caregiving demands of their children with rare chronic conditions due to genetic disorders. Managing the child's chronic condition at home creates overwhelming caregiving demands and stress in parents and families (Christian, 1993, 1998, 2003, 2010). With advances in technology, children with chronic conditions are surviving longer and acute, lifethreatening conditions have become chronic (Perrin, Bloom, & Gortmaker, 2007). Yet providing home care for medicallyfragile children and children with chronic conditions has a negative impact on parents' psychological health and family functioning (Leonard, Brust, & Nelson, 1993; Patterson, Leonard, & Titus, 1993). Key predictors of health and well-being among parents who provide care for their children with chronic conditions and physical disabilities are caregiving demands, child behavior, and family functioning (Raina, O'Donnell, Rosenbaum, et al., 2005). When compared to parents of healthy children, parents and caregivers of children with chronic conditions and physical disabilities have more emotional and physical health problems related to the demands of caregiving at home (Murphy, Christian, Caplin, & Young, 2007). Thus, it is essential for parents and families to balance the caregiving demands of their children with chronic conditions with the individual needs of each family member to maintain family functioning and quality of life (Christian, 1993, 1998, 2010). Although advances in health care technology, genetics and genomics have expanded knowledge about complex genetic⁎ Corresponding author: Becky J. Christian, PhD, RN, FNAP. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.11.015 0882-5963/© 2016 Elsevier Inc. All rights reserved.
based chronic conditions, new chalIt is essential for lenges have been created for parents parents and careand families. Partnerships between givers to balance parents of children with chronic conthe caregiving deditions and health care providers are associated with decreased unmet child mands of children and family needs, improved access to with chronic condispecialty care and satisfaction with tions with the needs care (Denboba, McPherson, Kenney, of the family. Strickland, & Newacheck, 2006). Without family-centered care, the quality of care for children with chronic conditions and physical disabilities is compromised (Murphy & Christian, 2007). Thus, creating partnerships with parents and families is essential for providing quality pediatric nursing care to reduce the impact of the caregiving burden (Christian, 2011). Through nursing research, new knowledge and evidence is generated (Polit & Beck, 2012), evidence-based practice improves health outcomes (Melnyk & Fineout-Overholt, 2014), and these result in improved quality of pediatric nursing care (Hockenberry & Wilson, 2011). Translating research and integrating new evidence into practice, improves not only the health of parents and caregivers, but also the children for whom they provide care (Christian, 2011, 2014). In this special issue of the Journal of Pediatric Nursing, seven articles address the challenges of caregiving for parents of children with rare, chronic genetic disorders for translation into pediatric nursing practice: •
An overview of the formation and development of congenital heart defects (CHD), the most prevalent birth
100 defect, is presented to improve understanding of the influence of modifiable genetic and environmental factors associated with the risk of CHD by pediatric nurses (Butler, Caravan, & Johnson, 2016). Environmental conditions and chemical exposure during embryonic and fetal development result in epigenetic changes that contribute to CHD and other genetic disorders. Understanding genetic risk factors that contribute to the development of genetic disorders such as CHD is essential to conducting research to prevent environmental risk and to develop and test intervention strategies for improving the health of children with CHD and their families, as well as to improving pediatric nursing practice. • A mixed-methods study was employed to describe family management challenges and experiences of parents (N = 40; 33 mothers, 7 fathers) caring for sons (age 5 months to 26 years) diagnosed with a genetic condition, Klinefelter Syndrome (Close, Sadler, & Grey, 2016). Parents were surveyed via telephone or SKYPE® to determine their perceived stress, quality of life, and family management style. Results indicated that there were no significant differences in perceived stress among parent age groups, although older parents (age ≥ 55 years) demonstrated significantly higher stress levels than the normative reference group. Quality of life stratified by parental age group demonstrated significant differences for parenting (p = 0.02), with older parents less able to recruit help from others than middle-age (age 45 to 54 years) or younger parents (≤ = 44 years)(p = 0.03), and for disability support (p = 0.047), with lower support among middle-age parents, as compared to older parents (p = 0.049). Family management survey demonstrated significant differences between parent age groups with respect to child life difficulty (p = 0.006) and condition management ability (p = 0.005). Qualitative in-depth interviews through interpretive descriptive analysis revealed four overarching themes: (a) in the dark, (b) double-edged sword, (c) disclosure dilemma, and (d) need for a roadmap. These themes highlighted parents' need for information, understanding the symptoms of Klinefelter Syndrome, support for disclosure of the diagnosis and logical plan of care. It is important to note that parents were disturbed by how unfamiliar their healthcare providers were with diagnosis, treatment, and care for boys with Klinefelter Syndrome. • Parent perceptions (N = 11 mothers) of care by primary care providers for children with autism spectrum disorder (ASD) were explored with a mixed-methods design study (Russell & McClosky, 2016). Perceptions of familycentered care were evaluated with the measures of processes of care (MPOC-20), with parents describing their care as respectful and supportive, but lacking in providing general information. In-depth interviews with mothers using an interpretive phenomenological approach identified five primary themes associated with parents'
B.J. Christian
•
•
•
•
experiences raising a child with ASD and perceptions of care: (a) overwhelming emotion, (b) the medical home is only medical, (c) on our own, (d) school-related stress, and (e) future goals. Thus, parents identified the need for specialized, coordinated care for their children with ASD, and assistance in managing the child's social and emotional needs at home and in school. An exploratory, cross-sectional survey was conducted to describe parental experiences of caring for a child with mitochondrial disease, a chronic progressive genetic disorder (Senger, Ward, Barbosa-Leiker, & Bindler, 2016). An Internet survey was employed to obtain parent perspectives (N = 231; 95% mothers) of experiences with and adjustment to the child's mitochondrial disease (age birth to 18 years), as well as parenting stress. Significant associations were found between parent adjustment illness-related concerns and parenting stress (p = .01), with greater guilt and worry, unresolved sorrow and anger, and long-term uncertainty associated with greater stress, while greater emotional resources were associated with less stress. Thus, parenting a child with this chronic progressive genetic disorder is exemplified by the overwhelming caregiving burden and stress, as well as uncertainty about the child's future. An explanatory theoretical framework, Developmental origins of health and disease (DOHaD), is proposed to describe the interrelationships among the environmental factors and stressors that impact the developing fetus in utero that lead to epigenetic changes and increase the risk of subsequent chronic disease development in adulthood (Thiele & Anderson, 2016). The DOHaD framework has three primary tenets (i.e., plasticity, epigenetic modification, and programming) that describe an ecobiodevelopmental approach to understanding the evolution of disease and the basis for interventions to improve health. A descriptive qualitative study was conducted with parents (N = 20; 15 mothers, 5 fathers) to explore family functioning while living with a child (age 2 to 17 years) with a rare genomic condition, Prader-Willi Syndrome (PWS) that leads to behavior problems and excessive weight gain (Vitale, 2016). In-depth interviews revealed two overarching themes with 12 sub-themes about how their families function. The two overarching themes were: (a) taking action for the sake of the child with PWS; and (b) caring for oneself and family. The results revealed key insights about the challenges of living with PWS and highlighted the importance of healthcare providers providing guidance and support to the family to promote adjustment. Qualitative, focus groups were conducted with parents and caregivers (N = 20; 18 mothers, 1 father; 1 grandmother) to explore perspectives of stigma associated with sickle cell disease (SCD) in adolescents (age 12 to 18 years) (Wesley, Shao, Carroll, & Porter, 2016). Three primary themes were identified with sub-categories: (a) perceived and felt stigma across four settings: academic,
Caregiving Challenges athletic medical, and social; (b) internalized stigma of emotional distress and perceived stigma of children/ adolescents; and (c) suggestions from caregivers to provide SCD education to school personnel, peers, greater society, and adolescents' need to take ownership of the disease. Results suggest that parents and caregivers perceived stigma across settings and internalized feelings of stigma. Moreover, parents and caregivers identified the need to educate healthcare providers, schools, and communities about SCD. Parents of children with rare, chronic genetic disorders are challenged with an overwhelming caregiving burden. As highlighted by these articles, translational research may provide new insight and key intervention strategies for addressing these challenges and improving the care of children and their families. Moreover, through partnerships with parents, the demands of caregiving may be better addressed. To that end, when evidence is translated into practice, the quality of care is enhanced and quality of life is improved for children and their families.
References Butler, M. R., Caravan, M. J., & Johnson, T. S. (2016). Understanding genetics and pediatric cardiac health. Journal of Pediatric Nursing, 31, 3–10. Christian, B. J. (1993). Quality of life in families coping with a child's chronic illness. In S. Funk, M. Champagne, R. Weisse, & E. Tournquist (Eds.), Key aspects of chronic illness: Hospital and home (pp. 304–312). New York: Springer. Christian, B. J. (1998). Home care for the child and adolescent with chronic illness. In B. Vaughn-Cole, M. A. Johnson, J. A. Malone, & B. L. Walker (Eds.), Family nursing practice (pp. 128–148). Philadelphia: Saunders. Christian, B. J. (2003). Growing up with chronic illness: Psychosocial adjustment of children and adolescents with cystic fibrosis. In M. S. Miles, & D. Holditch-Davis (Eds.), Annual Review of Nursing Research, Vol. 21. (pp. 151–172). New York: Springer. Christian, B. J. (2010). Research commentary – Challenges for parents and families: Demands of caregiving of children with chronic conditions. Journal of Pediatric Nursing, 25, 299–301. Christian, B. J. (2011). Pediatric nursing research: Creating partnerships with parents to improve the health of children and adolescents. Journal of Pediatric Nursing, 26, 95–96.
101 Christian, B. J. (2014). Translational research – Multidimensional scope of pediatric nursing. Journal of Pediatric Nursing, 29, 508–510. Close, S., Sadler, L., & Grey, M. (2016). In the dark: Challenges of caring for sons with Klinefelter Syndrome. Journal of Pediatric Nursing, 31, 11–20. Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special healthcare needs. Pediatrics, 118, 1607–1615. Hockenberry, M. J., & Wilson, D. (2011). Wong's nursing care of infants and children (9th ed.). St. Louis: Mosby. Leonard, B. J., Brust, J. D., & Nelson, R. P. (1993). Parental distress: Caring for medically-fragile children at home. Journal of Pediatric Nursing, 8, 22–30. Melnyk, B. M., & Fineout-Overholt, E. (2014). Making the case for evidence-based practice and cultivating a spirit of inquiry. In B. M. Melnyk, & E. Fineout-Overholt (Eds.), Evidence-based practice in nursing and healthcare: A guide to best practice (pp. 3–24) (3rd ed.). Philadelphia: Wolters Kluwer/Lippincott, Williams & Wilkins. Murphy, N. A., & Christian, B. J. (2007). Disability in children and young adults: The unintended consequences. Archives of Pediatrics & Adolescent Medicine, 161, 930–932. Murphy, N. A., Christian, B. J., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33, 180–187. Patterson, J. M., Leonard, B. J., & Titus, J. C. (1993). Home care for medically-fragile children: Impact on family health and well-being. Journal of Developmental and Behavioral Pediatrics, 13, 248–255. Perrin, J. M., Bloom, S., & Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297, 2755–2759. Polit, D. F., & Beck, C. T. (2012). Nursing research: Generating and assessing evidence for nursing practice (9th ed.). Philadelphia: Lippincott Williams & Wilkins. Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., ... Wood, E. (2005). The health and well- being of caregivers of children with cerebral palsy. Pediatrics, 115, e626–e636. Russell, S., & McClosky, C. R. (2016). Parent perceptions of care received by children with autism spectrum disorder. Journal of Pediatric Nursing, 31, 21–31. Senger, B. A., Ward, L. D., Barbosa-Leiker, C., & Bindler, R. C. (2016). The parent experience of caring for a child with mitochondrial disease. Journal of Pediatric Nursing, 31, 32–41. Thiele, D. K., & Anderson, C. M. (2016). Developmental origins of health and disease: A challenge for nurses. Journal of Pediatric Nursing, 31, 42–46. Vitale, S. A. (2016). Parent recommendations for family functioning with Prader-Willi Syndrome: A rare genetic cause of childhood obesity. Journal of Pediatric Nursing, 31, 47–54. Wesley, K. M., Shao, M., Carroll, Y., & Porter, J. S. (2016). Caregiver perspectives of stigma associated with sickle cell disease in adolescents. Journal of Pediatric Nursing, 31, 55–63.
RESEARCH COMMENTARY DEPARTMENT Editor: Becky J. Christian PhD, RN, FNAP
Becky J. Christian, PhD, RN, FNAP
Translational Research – Caregiving Challenges for Parents of Children With Rare Chronic Conditions Due to Genetic Disorders Becky J. Christian PhD, RN, FNAP (Professor)⁎ School of Nursing, The University of Louisville, Louisville, KY Received 25 November 2015; accepted 25 November 2015
PARENTS AND FAMILIES are challenged with meeting the caregiving demands of their children with rare chronic conditions due to genetic disorders. Managing the child's chronic condition at home creates overwhelming caregiving demands and stress in parents and families (Christian, 1993, 1998, 2003, 2010). With advances in technology, children with chronic conditions are surviving longer and acute, lifethreatening conditions have become chronic (Perrin, Bloom, & Gortmaker, 2007). Yet providing home care for medicallyfragile children and children with chronic conditions has a negative impact on parents' psychological health and family functioning (Leonard, Brust, & Nelson, 1993; Patterson, Leonard, & Titus, 1993). Key predictors of health and well-being among parents who provide care for their children with chronic conditions and physical disabilities are caregiving demands, child behavior, and family functioning (Raina, O'Donnell, Rosenbaum, et al., 2005). When compared to parents of healthy children, parents and caregivers of children with chronic conditions and physical disabilities have more emotional and physical health problems related to the demands of caregiving at home (Murphy, Christian, Caplin, & Young, 2007). Thus, it is essential for parents and families to balance the caregiving demands of their children with chronic conditions with the individual needs of each family member to maintain family functioning and quality of life (Christian, 1993, 1998, 2010). Although advances in health care technology, genetics and genomics have expanded knowledge about complex genetic⁎ Corresponding author: Becky J. Christian, PhD, RN, FNAP. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.11.015 0882-5963/© 2016 Elsevier Inc. All rights reserved.
based chronic conditions, new chalIt is essential for lenges have been created for parents parents and careand families. Partnerships between givers to balance parents of children with chronic conthe caregiving deditions and health care providers are associated with decreased unmet child mands of children and family needs, improved access to with chronic condispecialty care and satisfaction with tions with the needs care (Denboba, McPherson, Kenney, of the family. Strickland, & Newacheck, 2006). Without family-centered care, the quality of care for children with chronic conditions and physical disabilities is compromised (Murphy & Christian, 2007). Thus, creating partnerships with parents and families is essential for providing quality pediatric nursing care to reduce the impact of the caregiving burden (Christian, 2011). Through nursing research, new knowledge and evidence is generated (Polit & Beck, 2012), evidence-based practice improves health outcomes (Melnyk & Fineout-Overholt, 2014), and these result in improved quality of pediatric nursing care (Hockenberry & Wilson, 2011). Translating research and integrating new evidence into practice, improves not only the health of parents and caregivers, but also the children for whom they provide care (Christian, 2011, 2014). In this special issue of the Journal of Pediatric Nursing, seven articles address the challenges of caregiving for parents of children with rare, chronic genetic disorders for translation into pediatric nursing practice: •
An overview of the formation and development of congenital heart defects (CHD), the most prevalent birth
100 defect, is presented to improve understanding of the influence of modifiable genetic and environmental factors associated with the risk of CHD by pediatric nurses (Butler, Caravan, & Johnson, 2016). Environmental conditions and chemical exposure during embryonic and fetal development result in epigenetic changes that contribute to CHD and other genetic disorders. Understanding genetic risk factors that contribute to the development of genetic disorders such as CHD is essential to conducting research to prevent environmental risk and to develop and test intervention strategies for improving the health of children with CHD and their families, as well as to improving pediatric nursing practice. • A mixed-methods study was employed to describe family management challenges and experiences of parents (N = 40; 33 mothers, 7 fathers) caring for sons (age 5 months to 26 years) diagnosed with a genetic condition, Klinefelter Syndrome (Close, Sadler, & Grey, 2016). Parents were surveyed via telephone or SKYPE® to determine their perceived stress, quality of life, and family management style. Results indicated that there were no significant differences in perceived stress among parent age groups, although older parents (age ≥ 55 years) demonstrated significantly higher stress levels than the normative reference group. Quality of life stratified by parental age group demonstrated significant differences for parenting (p = 0.02), with older parents less able to recruit help from others than middle-age (age 45 to 54 years) or younger parents (≤ = 44 years)(p = 0.03), and for disability support (p = 0.047), with lower support among middle-age parents, as compared to older parents (p = 0.049). Family management survey demonstrated significant differences between parent age groups with respect to child life difficulty (p = 0.006) and condition management ability (p = 0.005). Qualitative in-depth interviews through interpretive descriptive analysis revealed four overarching themes: (a) in the dark, (b) double-edged sword, (c) disclosure dilemma, and (d) need for a roadmap. These themes highlighted parents' need for information, understanding the symptoms of Klinefelter Syndrome, support for disclosure of the diagnosis and logical plan of care. It is important to note that parents were disturbed by how unfamiliar their healthcare providers were with diagnosis, treatment, and care for boys with Klinefelter Syndrome. • Parent perceptions (N = 11 mothers) of care by primary care providers for children with autism spectrum disorder (ASD) were explored with a mixed-methods design study (Russell & McClosky, 2016). Perceptions of familycentered care were evaluated with the measures of processes of care (MPOC-20), with parents describing their care as respectful and supportive, but lacking in providing general information. In-depth interviews with mothers using an interpretive phenomenological approach identified five primary themes associated with parents'
B.J. Christian
•
•
•
•
experiences raising a child with ASD and perceptions of care: (a) overwhelming emotion, (b) the medical home is only medical, (c) on our own, (d) school-related stress, and (e) future goals. Thus, parents identified the need for specialized, coordinated care for their children with ASD, and assistance in managing the child's social and emotional needs at home and in school. An exploratory, cross-sectional survey was conducted to describe parental experiences of caring for a child with mitochondrial disease, a chronic progressive genetic disorder (Senger, Ward, Barbosa-Leiker, & Bindler, 2016). An Internet survey was employed to obtain parent perspectives (N = 231; 95% mothers) of experiences with and adjustment to the child's mitochondrial disease (age birth to 18 years), as well as parenting stress. Significant associations were found between parent adjustment illness-related concerns and parenting stress (p = .01), with greater guilt and worry, unresolved sorrow and anger, and long-term uncertainty associated with greater stress, while greater emotional resources were associated with less stress. Thus, parenting a child with this chronic progressive genetic disorder is exemplified by the overwhelming caregiving burden and stress, as well as uncertainty about the child's future. An explanatory theoretical framework, Developmental origins of health and disease (DOHaD), is proposed to describe the interrelationships among the environmental factors and stressors that impact the developing fetus in utero that lead to epigenetic changes and increase the risk of subsequent chronic disease development in adulthood (Thiele & Anderson, 2016). The DOHaD framework has three primary tenets (i.e., plasticity, epigenetic modification, and programming) that describe an ecobiodevelopmental approach to understanding the evolution of disease and the basis for interventions to improve health. A descriptive qualitative study was conducted with parents (N = 20; 15 mothers, 5 fathers) to explore family functioning while living with a child (age 2 to 17 years) with a rare genomic condition, Prader-Willi Syndrome (PWS) that leads to behavior problems and excessive weight gain (Vitale, 2016). In-depth interviews revealed two overarching themes with 12 sub-themes about how their families function. The two overarching themes were: (a) taking action for the sake of the child with PWS; and (b) caring for oneself and family. The results revealed key insights about the challenges of living with PWS and highlighted the importance of healthcare providers providing guidance and support to the family to promote adjustment. Qualitative, focus groups were conducted with parents and caregivers (N = 20; 18 mothers, 1 father; 1 grandmother) to explore perspectives of stigma associated with sickle cell disease (SCD) in adolescents (age 12 to 18 years) (Wesley, Shao, Carroll, & Porter, 2016). Three primary themes were identified with sub-categories: (a) perceived and felt stigma across four settings: academic,
Caregiving Challenges athletic medical, and social; (b) internalized stigma of emotional distress and perceived stigma of children/ adolescents; and (c) suggestions from caregivers to provide SCD education to school personnel, peers, greater society, and adolescents' need to take ownership of the disease. Results suggest that parents and caregivers perceived stigma across settings and internalized feelings of stigma. Moreover, parents and caregivers identified the need to educate healthcare providers, schools, and communities about SCD. Parents of children with rare, chronic genetic disorders are challenged with an overwhelming caregiving burden. As highlighted by these articles, translational research may provide new insight and key intervention strategies for addressing these challenges and improving the care of children and their families. Moreover, through partnerships with parents, the demands of caregiving may be better addressed. To that end, when evidence is translated into practice, the quality of care is enhanced and quality of life is improved for children and their families.
References Butler, M. R., Caravan, M. J., & Johnson, T. S. (2016). Understanding genetics and pediatric cardiac health. Journal of Pediatric Nursing, 31, 3–10. Christian, B. J. (1993). Quality of life in families coping with a child's chronic illness. In S. Funk, M. Champagne, R. Weisse, & E. Tournquist (Eds.), Key aspects of chronic illness: Hospital and home (pp. 304–312). New York: Springer. Christian, B. J. (1998). Home care for the child and adolescent with chronic illness. In B. Vaughn-Cole, M. A. Johnson, J. A. Malone, & B. L. Walker (Eds.), Family nursing practice (pp. 128–148). Philadelphia: Saunders. Christian, B. J. (2003). Growing up with chronic illness: Psychosocial adjustment of children and adolescents with cystic fibrosis. In M. S. Miles, & D. Holditch-Davis (Eds.), Annual Review of Nursing Research, Vol. 21. (pp. 151–172). New York: Springer. Christian, B. J. (2010). Research commentary – Challenges for parents and families: Demands of caregiving of children with chronic conditions. Journal of Pediatric Nursing, 25, 299–301. Christian, B. J. (2011). Pediatric nursing research: Creating partnerships with parents to improve the health of children and adolescents. Journal of Pediatric Nursing, 26, 95–96.
101 Christian, B. J. (2014). Translational research – Multidimensional scope of pediatric nursing. Journal of Pediatric Nursing, 29, 508–510. Close, S., Sadler, L., & Grey, M. (2016). In the dark: Challenges of caring for sons with Klinefelter Syndrome. Journal of Pediatric Nursing, 31, 11–20. Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special healthcare needs. Pediatrics, 118, 1607–1615. Hockenberry, M. J., & Wilson, D. (2011). Wong's nursing care of infants and children (9th ed.). St. Louis: Mosby. Leonard, B. J., Brust, J. D., & Nelson, R. P. (1993). Parental distress: Caring for medically-fragile children at home. Journal of Pediatric Nursing, 8, 22–30. Melnyk, B. M., & Fineout-Overholt, E. (2014). Making the case for evidence-based practice and cultivating a spirit of inquiry. In B. M. Melnyk, & E. Fineout-Overholt (Eds.), Evidence-based practice in nursing and healthcare: A guide to best practice (pp. 3–24) (3rd ed.). Philadelphia: Wolters Kluwer/Lippincott, Williams & Wilkins. Murphy, N. A., & Christian, B. J. (2007). Disability in children and young adults: The unintended consequences. Archives of Pediatrics & Adolescent Medicine, 161, 930–932. Murphy, N. A., Christian, B. J., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33, 180–187. Patterson, J. M., Leonard, B. J., & Titus, J. C. (1993). Home care for medically-fragile children: Impact on family health and well-being. Journal of Developmental and Behavioral Pediatrics, 13, 248–255. Perrin, J. M., Bloom, S., & Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297, 2755–2759. Polit, D. F., & Beck, C. T. (2012). Nursing research: Generating and assessing evidence for nursing practice (9th ed.). Philadelphia: Lippincott Williams & Wilkins. Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., ... Wood, E. (2005). The health and well- being of caregivers of children with cerebral palsy. Pediatrics, 115, e626–e636. Russell, S., & McClosky, C. R. (2016). Parent perceptions of care received by children with autism spectrum disorder. Journal of Pediatric Nursing, 31, 21–31. Senger, B. A., Ward, L. D., Barbosa-Leiker, C., & Bindler, R. C. (2016). The parent experience of caring for a child with mitochondrial disease. Journal of Pediatric Nursing, 31, 32–41. Thiele, D. K., & Anderson, C. M. (2016). Developmental origins of health and disease: A challenge for nurses. Journal of Pediatric Nursing, 31, 42–46. Vitale, S. A. (2016). Parent recommendations for family functioning with Prader-Willi Syndrome: A rare genetic cause of childhood obesity. Journal of Pediatric Nursing, 31, 47–54. Wesley, K. M., Shao, M., Carroll, Y., & Porter, J. S. (2016). Caregiver perspectives of stigma associated with sickle cell disease in adolescents. Journal of Pediatric Nursing, 31, 55–63.