- Email: [email protected]
Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents
Journal of Pediatric Nursing xxx (2016) xxx–xxx
Contents lists available at ScienceDirect
Journal of Pediatric Nursing
Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents Becky J. Christian, PhD, RN, FNAP School of Nursing, University of Louisville, Louisville, KY, United States
a r t i c l e
i n f o
Article history: Received 22 September 2016 Accepted 26 September 2016 Available online xxxx
Adapting to the stress and challenges of chronic conditions is critical for children, adolescents, and their families in managing the demands of chronic conditions. Children and adolescents with chronic conditions are more vulnerable to stress due to the interplay between their developmental needs and the demands of chronic conditions. Protective factors such as resilience have been found to improve coping and competence among vulnerable children (Masten, 2001; Rutter, 2013). When the demands of chronic conditions challenge children and adolescents, these protective factors including resilience and support buffer the stress associated with management of their chronic condition. Balancing the demands of caregiving associated with chronic conditions in children and adolescents creates additional stress for children and their parents and families (Christian, 1993, 2003, 2016). Parents and families are challenged with caregiving on a daily basis as they struggle to adapt to and manage their child's chronic condition (Christian, 2010). New intervention strategies for adapting to the stress and challenges of chronic conditions are essential for improving the quality of life of children, adolescents, and their families. Nursing research provides new evidence for nursing practice (Polit & Beck, 2012) that is foundational for the development of evidence-based practice (Melnyk & FineoutOverholt, 2014) with the ultimate goal of improving the quality of care for children, adolescents, and their families (Hockenberry & Wilson, 2011). To that end, it is essential for pediatric nurses to teach children, adolescents, and their parents new strategies for adapting to the stress and challenges of chronic conditions in order to improve their quality of life. In this special issue of the Journal of Pediatric Nursing, six articles present the broad scope of autism spectrum disorder (ASD), as well as the stress and challenges associated with parenting and caregiving of their children with ASD. Another four articles focus on adapting to the challenges with respect to self-management of adolescents with sickle
E-mail address: [email protected].
cell disease, the psychosocial needs of adolescent siblings of children with cancer, the physical and behavioral needs of vulnerable adolescents in foster care, as well as children's physical resilience outcomes. Additionally, two articles present children's perceptions of support during needle-related medical procedures, and PICU nurses' beliefs regarding pain in critically ill children and adolescents. In this issue, these articles provide new insights about the challenges of vulnerable children and adolescents with chronic conditions, as well as new intervention strategies designed to improve adaptation and coping: • An integrative review was conducted to synthesize the literature on the risks and protective factors associated with parental stress selfmanagement in parents of children with autism spectrum disorders (ASD) (Bonis & Sawin, 2016). A search of the published literature in CINAHL, MedLine, and PsychInfo databases from 1998 to 2016 yielded 1616 articles with a final sample of 99 qualitative and quantitative studies that met the inclusion criteria. Results were organized using the Ryan and Sawin (2009) Individual and Family Self-management Theory as a framework for understanding parental stress and selfmanagement associated with ASD. A synthesis of the literature yielded three primary themes associated with parental stress and self-management associated with ASD that corresponded to the framework. More specifically, this paper focuses on Context: Risks and Protective Factors associated with parental stress with respect to the child with ASD. The first theme within the Context: Risks and Protective Factors category was identified as Condition-specific factors of the child's ASD and was noted in 50 of 99 studies, including three components: (a) complexity of condition and treatment associated with the child's inappropriate behavior and impaired sensory responses; (b) condition trajectory with respect to the struggle to understand the child's condition pre-diagnosis and the child's changing needs over time; and (c) condition stability and transitions through four stages. Physical and social environment was the second theme identified in 44 studies and included three distinct themes: (a) health care access; (b) transportation; and (c) social capital. The third theme Individual and family factors associated with risks or protective factors for parental stress self-management was noted in 26 studies and included three components: (a) learning ability and literacy; (b) family structure and functioning; and (c) capacity to self-manage. This synthesis of the literature revealed the key finding that the risks of caring for a child with ASD outweighed the protective factors for self-management of parental stress. Moreover, the review highlighted the difficulty that parents experienced seeking answers for their child's challenging behaviors, the
http://dx.doi.org/10.1016/j.pedn.2016.09.006 0882-5963/© 2016 Published by Elsevier Inc.
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
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B.J. Christian / Journal of Pediatric Nursing xxx (2016) xxx–xxx
lengthy amount of time necessary to access ASD services, and poor communication with healthcare providers and perceived disparities in healthcare. A qualitative, phenomenological hermeneutic study explored the experiences of families living with a child (4 to 13 years of age) with severe autism through interviews (n = 29) of individuals (n = 22) from 11 families as well as family group interviews (n = 6) during home visits (Gorlin, 2016). Triangulation of data from individual and family interviews, and observations, combined with family lifelines from diagnosis to the present yielded a broad picture of the family life experiences. Six essential themes captured the experiences of families with a child with severe autism: (a) family perception of the mystery and complexity of severe autism; (b) dealing with severe behavior challenges; (c) dealing with significant communication challenges; (d) experiencing severe stress; (e) living with severe isolation; and (f) a strong dependence of family and compassion for each other. Interestingly, families not only felt isolated from friends, schools, the public, and healthcare providers, but also from their own child. Moreover, families formed “hybrid families” comprised of extended family members and friends for additional support in caring for their child with severe autism. A descriptive, qualitative study was conducted with parents (n = 8; 6 mothers, 2 fathers) of children (6 to 16 years of age) with autism spectrum disorder (ASD) to explore parents' perspectives of the child's weight-related behaviors (e.g., nutrition, physical activity screen time behaviors, and risk for obesity), as well as healthcare providers' influence on weight-related behaviors (Polfuss et al., 2016). Open-ended, semi-structured telephone interviews were conducted with parents. The majority of parents (75%) and children (62.5%) were overweight or obese. Two overarching themes were identified: (a) challenges related to features of ASD with five sub-themes, including fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects; and (b) challenges related to care of children with ASD, including three sub-themes: lack of individualized care planning, choosing your battles, and impact of ASD on family. Findings indicated that parents were overwhelmed by ASD and made choices for convenience and to prevent triggering challenging behaviors in their child. Interestingly, some parents chose not follow healthcare provider recommendations regarding weightrelated behaviors when they perceived a lack of understanding of their situation. A descriptive, qualitative study was employed to describe parents' perceptions of sexual education content needs for their children (14 to 20 years of age) with autism spectrum disorder (ASD), as well as the parent-preferred methods of tailored sexual educational interventions (Mackin, Loew, Gonzalez, Tykol, & Christensen, 2016). Structured individual telephone interviews (n = 10) and a focus group (n = 5) were conducted with 15 parents (14 mothers, 1 father) of 16 children (14 male and 2 female) with ASD. Findings identified seven major themes, as follows: (a) ability to engage in relationships; (b) role responsibility; (c) child's history of sexual education; (d) fears and concerns; (e) content preferences; (f) facilitators and barriers to sexual education; and (g) recommendations for intervention development. It is noteworthy that all parents perceived that some level of sexual education was needed and identified the parents' primary role in educating their children with ASD, although there were few available resources with respect to their child's specific learning strategies. Young adults and adolescents (N = 11; 7 male, 4 female; 18 to 23 years) with autism spectrum disorder (ASD) participated in a qualitative study employing the photovoice (image-based) method to obtain their perceptions of strengths and resilience through photo-stories during small group discussions and individual reflection interviews (Teti, Cheak-Zamora, Lolli, & Maurer-Batjer, 2016). Thematic analysis yielded three key sub-themes that participants identified with respect to strengths and resilience despite their daily challenges associated
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with ASD: (a) special interests that cultivated positive emotions and coping strategies; (b) skills and activities that evoked pride; and (c) reframing ASD as special versus a disadvantage. Moreover, these findings demonstrated that the photovoice method facilitated communication in young adults and adolescents with ASD who have difficulty in expressive and receptive language and has the potential to enhance communication with parents, families, and healthcare providers. An integrative review of the literature was conducted to examine the relationship between respite care and stress among caregivers of children with autism spectrum disorder (ASD) (Whitmore, 2016). A search of the published literature included in PubMed, CINAHL, ERIC, and PsychInfo databases from 2000 to 2016 retrieved 26 records for a final sample of 11 research studies that met the inclusion criteria although one article was expert opinion (evidence level VII). Analysis of the evidence identified three categories describing the association between respite care and levels of stress: (a) lower stress (n = 8 studies); (b) high stress (n = 2 studies); and (c) no relationship (n = 1 study). Although methodological issues indicated variable quality across the studies in this review, the majority of studies found that respite care was associated with lower levels of stress among caregivers of children with ASD. An integrative review was employed to describe the delivery of healthcare services to adolescents and young adults during and after foster care through search of the published research in CINAHL, PsychInfo, and Medline/OVID databases from 2004 to 2014 (Collins, 2016). The search retrieved 611 studies with a final sample of 18 research studies (10 quantitative, 8 qualitative studies) that met the inclusion criteria. The studies included samples of adolescents and young adults (12 to 30 years of age) who had been in foster care. Four categories were identified from the review: (a) health outcomes; (b) relationships with adults; (c) resources to access health services; and (d) comparison to youth not in foster care. In summary, the ability of adolescents in foster care to adequately meet their health needs was linked to the ability to negotiate resources and successfully interact with adults. Adolescents in foster care faced similar challenges to other vulnerable youth when transitioning to young adulthood. A descriptive, qualitative focus group design was used to explore the challenges associated with independent self-management by adolescents (N = 14; 11 to 18 years) with sickle cell disease (SCD) (HbSS genotype) and their parents/primary caregivers (N = 15) (Kayle, Tanabe, Shah, Baker-Ward, & Docherty, 2016). Content analysis of focus group transcripts was conducted. Adolescents identified three categories of adaptive challenges with respect to their SCD and how their condition affected their lives: (a) mastering complex symptom management; (b) communicating about SCD and symptoms; and (c) maintaining control. Adolescents described five types of adaptive work to transition to independent self-management, including: (a) pushing back at parents; (b) defaulting back to parental care; (c) stepping up with time; (d) learning how SCD affects them; and (e) educating friends about SCD. Parents identified five adaptive challenges related to independent management of SCD by adolescents, including: (a) giving over the complex management; (b) communicating the management with the adolescent; (c) balancing protection against risk with fostering independence; (d) changing a comfortable rhythm; and (e) releasing the adolescent into an “SCD-Naïve” world. Parent adaptive work included two categories: (a) engaging the adolescent in open dialogue; and (b) go-managing with the adolescent. Findings highlight the challenges that adolescents with SCD and their parents cope with and adapt to the transition to independent self-management of their chronic condition. The effect of vulnerability and protective factors on children's physical health and their resilience to psychosocial stress was explored through meta-analysis of the published research contained in seven databases (e.g., PsychInfo, PsycArticles, Biosis, Web of Science, Medline, Embase, PubMed, and Scopus)(Lavoie, Pereira, & Talwar, 2016). The searches yielded 4123 records that were reduced to 2440 articles when
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
B.J. Christian / Journal of Pediatric Nursing xxx (2016) xxx–xxx
duplicates were removed. After further review, the final sample was comprised of 14 research studies that met the inclusion criteria with a total of 12,772 participants, including six studies of children (5 to 13 years) and eight studies focused on adolescents (13 to 20 years). Six studies (n = 4173) explored the association between protective factors and children's health (e.g., physiological, sleep behavior, and overall health), indicating a significant moderate effect. Seven studies (n = 8539) examined vulnerability factors and health, with a significant small-moderate effect on health measures (e.g., physiological, sleep behavior, and overall health). Thus, the findings from the meta-analysis suggest that protective factors contributed to children's resilience and overall physical health, and the type of health measure moderated children's vulnerability. • A qualitative, phenomenological study was conducted to understand the psychosocial needs of non-bereaved adolescent siblings (n = 7 females between 20 to 30 years old) who were 11 to 18 years of age at the time the child who was diagnosed and treated for cancer and had survived (Tasker & Stonebridge, 2016). Retrospective narrative interviews were conducted with siblings who were adolescents during the cancer experience with treatment ranging from 7 to 17 years. Thematic analysis yielded eight need-based themes of adolescent well-sibling during the cancer experience, including: (a) the need for attention and acknowledgment; (b) the need for honest and open family communication; (c) inclusion in the family during treatment; (d) knowing it is normal to have difficult emotions and uncomfortable thoughts; (e) emotional support specifically for wellsiblings; (f) instrumental support; (g) being a kid; and (h) family humor, laughter, and light-heartedness. Thus, the experiences of adolescent well-siblings of children with cancer highlight the critical need for emotional support for well-siblings during the cancer treatment experience. • A qualitative, phenomenological hermeneutic study was designed to explain and understand the perspectives of young children (3 to 7 years of age) and the meaning of support during needle-related medical procedures at four pediatric healthcare settings in Sweden (Karlsson, Englund, Enskär, Nyström, & Rydström, 2016). After preparatory play sessions, participant observations of young children (n = 21) were video-recorded while children were undergoing needle-related medical procedures, then children were interviewed immediately after the procedure using dolls, stuffed animals, and medical equipment to facilitate their communication. Interviews were analyzed using the lifeworld hermeneutic approach and identified six themes with respect to the phenomenon of support for children during needle-related medical procedures: (a) being the center of attention; (b) getting help with distraction; (c) being pampered; (d) becoming involved; (e) entrusting oneself to the safety of adults; and (f) being rewarded. Thus, children perceive the adult as being supportive during needle-related medical procedures when the adult guides the child through the procedure based on the child's reactions with the child as an active participant in the procedure. • A convergent parallel, mixed-methods study was employed to examine PICU nurses' (n = 40) beliefs regarding assessment and management of pain in critically ill children (LaFond, Van Hulle Vincent, Oosterhouse, & Wilkie, 2016). PICU nurses completed the pain beliefs and practices questionnaire (PBPQ) and responded to four computergenerated virtual human (VH) vignettes depicting four 10-year-old African-American boys admitted to PICU with two boys on first postoperative day after abdominal surgery and two boys experiencing a sickle cell vaso-occlusive crisis. For each vignette, nurses rated the child's pain intensity and described how they would treat their pain through open-ended interviews. Data were collected concurrently for the quantitative and qualitative components of the study and analyzed in parallel to enhance understanding of nurses' decisionmaking with respect to children's pain and management by PICU nurses. Findings indicated that nurses' beliefs were consistent with effective pain management strategies, yet there were inaccurate
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beliefs related to the need to verify the child's pain reports with physical indicators, the pharmacokinetics of intravenous opioids, and the effect of unrelieved pain on the immune system. Convergent beliefs between the questionnaire and interview included the use of physical indicators to verify pain, the need to take the child's word about descriptions of pain, and concerns about the negative effects of analgesics. Divergent and conflicting beliefs between the questionnaire and interview were found with respect to the legitimacy of the child's pain report. Thus, PICU nurses need guidance and educational interventions with respect to pain beliefs and pain management in practice.
Adapting to and coping with the challenges of chronic conditions reflects vulnerabilities that children, adolescents, and their families face on a daily basis. Coping with these challenges is stressful, yet may be overcome through resilience and supportive environments. As highlighted by the articles in this issue, the perspectives of parents, adolescents, and children are essential for guiding the development of new intervention strategies. Moreover, evidence generated through research designed to test the effectiveness of new interventions leads to improved strategies for improving adaptation to the demands of chronic conditions. To that end, translating new intervention strategies into pediatric nursing practice will enhance adaptation to the stress and challenges of chronic conditions, thereby improving the quality of life of children, adolescents, and their families. References Bonis, S. A., & Sawin, K. J. (2016). Risks and protective factors for stress self-management in parents of children with autism spectrum disorders: An integrated review of the literature. Journal of Pediatric Nursing, 31(6) (XXX). 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. (2003). Growing up with chronic illness: Psychosocial adjustment of children and adolescents with cystic fibrosis. In M. S. Miles, & D. HolditchDavis (Eds.), Annual review of nursing research. Vol. 21. (pp. 151–172). New York: Springer. Christian, B. J. (2010). Challenges for parents and families: Demands of caregiving of children with chronic conditions. Journal of Pediatric Nursing, 25, 299–301. Christian, B. J. (2016). Translational research – Balancing the demands of chronic illness caregiving and self-management for children, adolescents, and their parents. Journal of Pediatric Nursing, 31(4), 449–452. Collins, J. L. (2016). Integrative review: Delivery of healthcare services to adolescents and young adults during and after foster care. Journal of Pediatric Nursing, 31(6) (XXX). Gorlin, J. B. (2016). Severe childhood autism: The family lived experience. Journal of Pediatric Nursing, 31(6) (XXX). Hockenberry, M. J., & Wilson, D. (2011). Wong's nursing care of infants and children (9th ed.). St. Louis: Mosby. Karlsson, K., Englund, A. -C. D., Enskär, K., Nyström, M., & Rydström, I. (2016). Experiencing support during needle-related medical procedures: A hermeneutic study with young children (3–7 years). Journal of Pediatric Nursing, 31(6) (XXX). Kayle, M., Tanabe, P., Shah, N. R., Baker-Ward, L., & Docherty, S. L. (2016). Challenges in shifting management responsibility from parents to adolescents with sickle cell disease. Journal of Pediatric Nursing, 31(6) (XXX). LaFond, C. M., Van Hulle Vincent, C., Oosterhouse, K., & Wilkie, D. J. (2016). Nurses' beliefs regarding pain in critically ill children: A mixed-methods study. Journal of Pediatric Nursing, 31(6) (XXX). Lavoie, J., Pereira, L. C., & Talwar, V. (2016). Children's physical resilience outcomes: Metaanalysis of vulnerability and protective factors. Journal of Pediatric Nursing, 31(6) (XXX). Mackin, M. L., Loew, N., Gonzalez, A., Tykol, H., & Christensen, T. (2016). Parent perceptions of sexual education needs for their children with autism. Journal of Pediatric Nursing, 31(6) (XXX). Masten, A. S. (2001). Ordinary magic: Resilience processes in development. The American Psychologist, 56, 227–238. 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. Polfuss, M., Johnson, N., Bonis, S. A., Hovis, S. L., Apollon, F., & Sawin, K. J. (2016). Autism spectrum disorder and the child's weight-related behaviors: A parents' perspective. Journal of Pediatric Nursing, 31(6) (XXX). Polit, D. F., & Beck, C. T. (2012). Nursing research: Generating and assessing evidence for nursing practice (9th ed.). Philadelphia: Lippincott Williams & Wilkins. Rutter, M. (2013). Annual research review: Resilience – Clinical implications. Journal of Child Psychology and Psychiatry, 54, 474–487.
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
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Ryan, P., & Sawin, K. J. (2009). The individual and family self-management theory: Background and perspectives on context, process, and outcomes. Nursing Outlook, 57, 217–225. Tasker, S. L., & Stonebridge, G. G. S. (2016). Siblings, you matter: Exploring the needs of adolescent siblings of children and youth with cancer. Journal of Pediatric Nursing, 31(6) (XXX).
Teti, M., Cheak-Zamora, N., Lolli, B., & Maurer-Batjer, A. (2016). Reframing autism: Young adults with autism share their strengths through photo-stories. Journal of Pediatric Nursing, 31(6) (XXX). Whitmore, K. E. (2016). Respite care and stress among caregivers of children with autism spectrum disorder: An integrative review. Journal of Pediatric Nursing, 31(6) (XXX).
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
Contents lists available at ScienceDirect
Journal of Pediatric Nursing
Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents Becky J. Christian, PhD, RN, FNAP School of Nursing, University of Louisville, Louisville, KY, United States
a r t i c l e
i n f o
Article history: Received 22 September 2016 Accepted 26 September 2016 Available online xxxx
Adapting to the stress and challenges of chronic conditions is critical for children, adolescents, and their families in managing the demands of chronic conditions. Children and adolescents with chronic conditions are more vulnerable to stress due to the interplay between their developmental needs and the demands of chronic conditions. Protective factors such as resilience have been found to improve coping and competence among vulnerable children (Masten, 2001; Rutter, 2013). When the demands of chronic conditions challenge children and adolescents, these protective factors including resilience and support buffer the stress associated with management of their chronic condition. Balancing the demands of caregiving associated with chronic conditions in children and adolescents creates additional stress for children and their parents and families (Christian, 1993, 2003, 2016). Parents and families are challenged with caregiving on a daily basis as they struggle to adapt to and manage their child's chronic condition (Christian, 2010). New intervention strategies for adapting to the stress and challenges of chronic conditions are essential for improving the quality of life of children, adolescents, and their families. Nursing research provides new evidence for nursing practice (Polit & Beck, 2012) that is foundational for the development of evidence-based practice (Melnyk & FineoutOverholt, 2014) with the ultimate goal of improving the quality of care for children, adolescents, and their families (Hockenberry & Wilson, 2011). To that end, it is essential for pediatric nurses to teach children, adolescents, and their parents new strategies for adapting to the stress and challenges of chronic conditions in order to improve their quality of life. In this special issue of the Journal of Pediatric Nursing, six articles present the broad scope of autism spectrum disorder (ASD), as well as the stress and challenges associated with parenting and caregiving of their children with ASD. Another four articles focus on adapting to the challenges with respect to self-management of adolescents with sickle
E-mail address: [email protected].
cell disease, the psychosocial needs of adolescent siblings of children with cancer, the physical and behavioral needs of vulnerable adolescents in foster care, as well as children's physical resilience outcomes. Additionally, two articles present children's perceptions of support during needle-related medical procedures, and PICU nurses' beliefs regarding pain in critically ill children and adolescents. In this issue, these articles provide new insights about the challenges of vulnerable children and adolescents with chronic conditions, as well as new intervention strategies designed to improve adaptation and coping: • An integrative review was conducted to synthesize the literature on the risks and protective factors associated with parental stress selfmanagement in parents of children with autism spectrum disorders (ASD) (Bonis & Sawin, 2016). A search of the published literature in CINAHL, MedLine, and PsychInfo databases from 1998 to 2016 yielded 1616 articles with a final sample of 99 qualitative and quantitative studies that met the inclusion criteria. Results were organized using the Ryan and Sawin (2009) Individual and Family Self-management Theory as a framework for understanding parental stress and selfmanagement associated with ASD. A synthesis of the literature yielded three primary themes associated with parental stress and self-management associated with ASD that corresponded to the framework. More specifically, this paper focuses on Context: Risks and Protective Factors associated with parental stress with respect to the child with ASD. The first theme within the Context: Risks and Protective Factors category was identified as Condition-specific factors of the child's ASD and was noted in 50 of 99 studies, including three components: (a) complexity of condition and treatment associated with the child's inappropriate behavior and impaired sensory responses; (b) condition trajectory with respect to the struggle to understand the child's condition pre-diagnosis and the child's changing needs over time; and (c) condition stability and transitions through four stages. Physical and social environment was the second theme identified in 44 studies and included three distinct themes: (a) health care access; (b) transportation; and (c) social capital. The third theme Individual and family factors associated with risks or protective factors for parental stress self-management was noted in 26 studies and included three components: (a) learning ability and literacy; (b) family structure and functioning; and (c) capacity to self-manage. This synthesis of the literature revealed the key finding that the risks of caring for a child with ASD outweighed the protective factors for self-management of parental stress. Moreover, the review highlighted the difficulty that parents experienced seeking answers for their child's challenging behaviors, the
http://dx.doi.org/10.1016/j.pedn.2016.09.006 0882-5963/© 2016 Published by Elsevier Inc.
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
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B.J. Christian / Journal of Pediatric Nursing xxx (2016) xxx–xxx
lengthy amount of time necessary to access ASD services, and poor communication with healthcare providers and perceived disparities in healthcare. A qualitative, phenomenological hermeneutic study explored the experiences of families living with a child (4 to 13 years of age) with severe autism through interviews (n = 29) of individuals (n = 22) from 11 families as well as family group interviews (n = 6) during home visits (Gorlin, 2016). Triangulation of data from individual and family interviews, and observations, combined with family lifelines from diagnosis to the present yielded a broad picture of the family life experiences. Six essential themes captured the experiences of families with a child with severe autism: (a) family perception of the mystery and complexity of severe autism; (b) dealing with severe behavior challenges; (c) dealing with significant communication challenges; (d) experiencing severe stress; (e) living with severe isolation; and (f) a strong dependence of family and compassion for each other. Interestingly, families not only felt isolated from friends, schools, the public, and healthcare providers, but also from their own child. Moreover, families formed “hybrid families” comprised of extended family members and friends for additional support in caring for their child with severe autism. A descriptive, qualitative study was conducted with parents (n = 8; 6 mothers, 2 fathers) of children (6 to 16 years of age) with autism spectrum disorder (ASD) to explore parents' perspectives of the child's weight-related behaviors (e.g., nutrition, physical activity screen time behaviors, and risk for obesity), as well as healthcare providers' influence on weight-related behaviors (Polfuss et al., 2016). Open-ended, semi-structured telephone interviews were conducted with parents. The majority of parents (75%) and children (62.5%) were overweight or obese. Two overarching themes were identified: (a) challenges related to features of ASD with five sub-themes, including fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects; and (b) challenges related to care of children with ASD, including three sub-themes: lack of individualized care planning, choosing your battles, and impact of ASD on family. Findings indicated that parents were overwhelmed by ASD and made choices for convenience and to prevent triggering challenging behaviors in their child. Interestingly, some parents chose not follow healthcare provider recommendations regarding weightrelated behaviors when they perceived a lack of understanding of their situation. A descriptive, qualitative study was employed to describe parents' perceptions of sexual education content needs for their children (14 to 20 years of age) with autism spectrum disorder (ASD), as well as the parent-preferred methods of tailored sexual educational interventions (Mackin, Loew, Gonzalez, Tykol, & Christensen, 2016). Structured individual telephone interviews (n = 10) and a focus group (n = 5) were conducted with 15 parents (14 mothers, 1 father) of 16 children (14 male and 2 female) with ASD. Findings identified seven major themes, as follows: (a) ability to engage in relationships; (b) role responsibility; (c) child's history of sexual education; (d) fears and concerns; (e) content preferences; (f) facilitators and barriers to sexual education; and (g) recommendations for intervention development. It is noteworthy that all parents perceived that some level of sexual education was needed and identified the parents' primary role in educating their children with ASD, although there were few available resources with respect to their child's specific learning strategies. Young adults and adolescents (N = 11; 7 male, 4 female; 18 to 23 years) with autism spectrum disorder (ASD) participated in a qualitative study employing the photovoice (image-based) method to obtain their perceptions of strengths and resilience through photo-stories during small group discussions and individual reflection interviews (Teti, Cheak-Zamora, Lolli, & Maurer-Batjer, 2016). Thematic analysis yielded three key sub-themes that participants identified with respect to strengths and resilience despite their daily challenges associated
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with ASD: (a) special interests that cultivated positive emotions and coping strategies; (b) skills and activities that evoked pride; and (c) reframing ASD as special versus a disadvantage. Moreover, these findings demonstrated that the photovoice method facilitated communication in young adults and adolescents with ASD who have difficulty in expressive and receptive language and has the potential to enhance communication with parents, families, and healthcare providers. An integrative review of the literature was conducted to examine the relationship between respite care and stress among caregivers of children with autism spectrum disorder (ASD) (Whitmore, 2016). A search of the published literature included in PubMed, CINAHL, ERIC, and PsychInfo databases from 2000 to 2016 retrieved 26 records for a final sample of 11 research studies that met the inclusion criteria although one article was expert opinion (evidence level VII). Analysis of the evidence identified three categories describing the association between respite care and levels of stress: (a) lower stress (n = 8 studies); (b) high stress (n = 2 studies); and (c) no relationship (n = 1 study). Although methodological issues indicated variable quality across the studies in this review, the majority of studies found that respite care was associated with lower levels of stress among caregivers of children with ASD. An integrative review was employed to describe the delivery of healthcare services to adolescents and young adults during and after foster care through search of the published research in CINAHL, PsychInfo, and Medline/OVID databases from 2004 to 2014 (Collins, 2016). The search retrieved 611 studies with a final sample of 18 research studies (10 quantitative, 8 qualitative studies) that met the inclusion criteria. The studies included samples of adolescents and young adults (12 to 30 years of age) who had been in foster care. Four categories were identified from the review: (a) health outcomes; (b) relationships with adults; (c) resources to access health services; and (d) comparison to youth not in foster care. In summary, the ability of adolescents in foster care to adequately meet their health needs was linked to the ability to negotiate resources and successfully interact with adults. Adolescents in foster care faced similar challenges to other vulnerable youth when transitioning to young adulthood. A descriptive, qualitative focus group design was used to explore the challenges associated with independent self-management by adolescents (N = 14; 11 to 18 years) with sickle cell disease (SCD) (HbSS genotype) and their parents/primary caregivers (N = 15) (Kayle, Tanabe, Shah, Baker-Ward, & Docherty, 2016). Content analysis of focus group transcripts was conducted. Adolescents identified three categories of adaptive challenges with respect to their SCD and how their condition affected their lives: (a) mastering complex symptom management; (b) communicating about SCD and symptoms; and (c) maintaining control. Adolescents described five types of adaptive work to transition to independent self-management, including: (a) pushing back at parents; (b) defaulting back to parental care; (c) stepping up with time; (d) learning how SCD affects them; and (e) educating friends about SCD. Parents identified five adaptive challenges related to independent management of SCD by adolescents, including: (a) giving over the complex management; (b) communicating the management with the adolescent; (c) balancing protection against risk with fostering independence; (d) changing a comfortable rhythm; and (e) releasing the adolescent into an “SCD-Naïve” world. Parent adaptive work included two categories: (a) engaging the adolescent in open dialogue; and (b) go-managing with the adolescent. Findings highlight the challenges that adolescents with SCD and their parents cope with and adapt to the transition to independent self-management of their chronic condition. The effect of vulnerability and protective factors on children's physical health and their resilience to psychosocial stress was explored through meta-analysis of the published research contained in seven databases (e.g., PsychInfo, PsycArticles, Biosis, Web of Science, Medline, Embase, PubMed, and Scopus)(Lavoie, Pereira, & Talwar, 2016). The searches yielded 4123 records that were reduced to 2440 articles when
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006
B.J. Christian / Journal of Pediatric Nursing xxx (2016) xxx–xxx
duplicates were removed. After further review, the final sample was comprised of 14 research studies that met the inclusion criteria with a total of 12,772 participants, including six studies of children (5 to 13 years) and eight studies focused on adolescents (13 to 20 years). Six studies (n = 4173) explored the association between protective factors and children's health (e.g., physiological, sleep behavior, and overall health), indicating a significant moderate effect. Seven studies (n = 8539) examined vulnerability factors and health, with a significant small-moderate effect on health measures (e.g., physiological, sleep behavior, and overall health). Thus, the findings from the meta-analysis suggest that protective factors contributed to children's resilience and overall physical health, and the type of health measure moderated children's vulnerability. • A qualitative, phenomenological study was conducted to understand the psychosocial needs of non-bereaved adolescent siblings (n = 7 females between 20 to 30 years old) who were 11 to 18 years of age at the time the child who was diagnosed and treated for cancer and had survived (Tasker & Stonebridge, 2016). Retrospective narrative interviews were conducted with siblings who were adolescents during the cancer experience with treatment ranging from 7 to 17 years. Thematic analysis yielded eight need-based themes of adolescent well-sibling during the cancer experience, including: (a) the need for attention and acknowledgment; (b) the need for honest and open family communication; (c) inclusion in the family during treatment; (d) knowing it is normal to have difficult emotions and uncomfortable thoughts; (e) emotional support specifically for wellsiblings; (f) instrumental support; (g) being a kid; and (h) family humor, laughter, and light-heartedness. Thus, the experiences of adolescent well-siblings of children with cancer highlight the critical need for emotional support for well-siblings during the cancer treatment experience. • A qualitative, phenomenological hermeneutic study was designed to explain and understand the perspectives of young children (3 to 7 years of age) and the meaning of support during needle-related medical procedures at four pediatric healthcare settings in Sweden (Karlsson, Englund, Enskär, Nyström, & Rydström, 2016). After preparatory play sessions, participant observations of young children (n = 21) were video-recorded while children were undergoing needle-related medical procedures, then children were interviewed immediately after the procedure using dolls, stuffed animals, and medical equipment to facilitate their communication. Interviews were analyzed using the lifeworld hermeneutic approach and identified six themes with respect to the phenomenon of support for children during needle-related medical procedures: (a) being the center of attention; (b) getting help with distraction; (c) being pampered; (d) becoming involved; (e) entrusting oneself to the safety of adults; and (f) being rewarded. Thus, children perceive the adult as being supportive during needle-related medical procedures when the adult guides the child through the procedure based on the child's reactions with the child as an active participant in the procedure. • A convergent parallel, mixed-methods study was employed to examine PICU nurses' (n = 40) beliefs regarding assessment and management of pain in critically ill children (LaFond, Van Hulle Vincent, Oosterhouse, & Wilkie, 2016). PICU nurses completed the pain beliefs and practices questionnaire (PBPQ) and responded to four computergenerated virtual human (VH) vignettes depicting four 10-year-old African-American boys admitted to PICU with two boys on first postoperative day after abdominal surgery and two boys experiencing a sickle cell vaso-occlusive crisis. For each vignette, nurses rated the child's pain intensity and described how they would treat their pain through open-ended interviews. Data were collected concurrently for the quantitative and qualitative components of the study and analyzed in parallel to enhance understanding of nurses' decisionmaking with respect to children's pain and management by PICU nurses. Findings indicated that nurses' beliefs were consistent with effective pain management strategies, yet there were inaccurate
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beliefs related to the need to verify the child's pain reports with physical indicators, the pharmacokinetics of intravenous opioids, and the effect of unrelieved pain on the immune system. Convergent beliefs between the questionnaire and interview included the use of physical indicators to verify pain, the need to take the child's word about descriptions of pain, and concerns about the negative effects of analgesics. Divergent and conflicting beliefs between the questionnaire and interview were found with respect to the legitimacy of the child's pain report. Thus, PICU nurses need guidance and educational interventions with respect to pain beliefs and pain management in practice.
Adapting to and coping with the challenges of chronic conditions reflects vulnerabilities that children, adolescents, and their families face on a daily basis. Coping with these challenges is stressful, yet may be overcome through resilience and supportive environments. As highlighted by the articles in this issue, the perspectives of parents, adolescents, and children are essential for guiding the development of new intervention strategies. Moreover, evidence generated through research designed to test the effectiveness of new interventions leads to improved strategies for improving adaptation to the demands of chronic conditions. To that end, translating new intervention strategies into pediatric nursing practice will enhance adaptation to the stress and challenges of chronic conditions, thereby improving the quality of life of children, adolescents, and their families. References Bonis, S. A., & Sawin, K. J. (2016). Risks and protective factors for stress self-management in parents of children with autism spectrum disorders: An integrated review of the literature. Journal of Pediatric Nursing, 31(6) (XXX). 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. (2003). Growing up with chronic illness: Psychosocial adjustment of children and adolescents with cystic fibrosis. In M. S. Miles, & D. HolditchDavis (Eds.), Annual review of nursing research. Vol. 21. (pp. 151–172). New York: Springer. Christian, B. J. (2010). Challenges for parents and families: Demands of caregiving of children with chronic conditions. Journal of Pediatric Nursing, 25, 299–301. Christian, B. J. (2016). Translational research – Balancing the demands of chronic illness caregiving and self-management for children, adolescents, and their parents. Journal of Pediatric Nursing, 31(4), 449–452. Collins, J. L. (2016). Integrative review: Delivery of healthcare services to adolescents and young adults during and after foster care. Journal of Pediatric Nursing, 31(6) (XXX). Gorlin, J. B. (2016). Severe childhood autism: The family lived experience. Journal of Pediatric Nursing, 31(6) (XXX). Hockenberry, M. J., & Wilson, D. (2011). Wong's nursing care of infants and children (9th ed.). St. Louis: Mosby. Karlsson, K., Englund, A. -C. D., Enskär, K., Nyström, M., & Rydström, I. (2016). Experiencing support during needle-related medical procedures: A hermeneutic study with young children (3–7 years). Journal of Pediatric Nursing, 31(6) (XXX). Kayle, M., Tanabe, P., Shah, N. R., Baker-Ward, L., & Docherty, S. L. (2016). Challenges in shifting management responsibility from parents to adolescents with sickle cell disease. Journal of Pediatric Nursing, 31(6) (XXX). LaFond, C. M., Van Hulle Vincent, C., Oosterhouse, K., & Wilkie, D. J. (2016). Nurses' beliefs regarding pain in critically ill children: A mixed-methods study. Journal of Pediatric Nursing, 31(6) (XXX). Lavoie, J., Pereira, L. C., & Talwar, V. (2016). Children's physical resilience outcomes: Metaanalysis of vulnerability and protective factors. Journal of Pediatric Nursing, 31(6) (XXX). Mackin, M. L., Loew, N., Gonzalez, A., Tykol, H., & Christensen, T. (2016). Parent perceptions of sexual education needs for their children with autism. Journal of Pediatric Nursing, 31(6) (XXX). Masten, A. S. (2001). Ordinary magic: Resilience processes in development. The American Psychologist, 56, 227–238. 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. Polfuss, M., Johnson, N., Bonis, S. A., Hovis, S. L., Apollon, F., & Sawin, K. J. (2016). Autism spectrum disorder and the child's weight-related behaviors: A parents' perspective. Journal of Pediatric Nursing, 31(6) (XXX). Polit, D. F., & Beck, C. T. (2012). Nursing research: Generating and assessing evidence for nursing practice (9th ed.). Philadelphia: Lippincott Williams & Wilkins. Rutter, M. (2013). Annual research review: Resilience – Clinical implications. Journal of Child Psychology and Psychiatry, 54, 474–487.
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Teti, M., Cheak-Zamora, N., Lolli, B., & Maurer-Batjer, A. (2016). Reframing autism: Young adults with autism share their strengths through photo-stories. Journal of Pediatric Nursing, 31(6) (XXX). Whitmore, K. E. (2016). Respite care and stress among caregivers of children with autism spectrum disorder: An integrative review. Journal of Pediatric Nursing, 31(6) (XXX).
Please cite this article as: Christian, B.J., Translational Research – Adapting to the Stress and Challenges of Chronic Conditions in Children and Adolescents, Journal of Pediatric Nursing (2016), http://dx.doi.org/10.1016/j.pedn.2016.09.006