Journal of Pediatric Nursing (2014) 29, 83–85

RESEARCH COMMENTARY COLUMN Column Editor: Becky J. Christian, PhD, RN

Becky J. Christian, PhD, RN

Multidimensional Nature of Caregiving: Translating Research Into Everyday Practice Becky J. Christian PhD, RN ⁎ School of Nursing, University of Alabama at Birmingham, Birmingham, AL

CAREGIVING IS ONE of the responsibilities of parenting that encompasses all aspects of the child's care. Parents provide care to their dependent children, nurturing and teaching them to care for themselves as they grow and develop. Parents teach children healthy choices and prevention behaviors to promote healthy lifestyles in their children and families. But when children have a chronic illness or physical disability, the caregiving demands increase beyond typical parenting and represent a new dimension that includes management of the chronic condition and coordination of care that may extend throughout the child's life. Managing these caregiving demands at home may be overwhelming and create additional stress as parents learn how to provide specialized care to their child and cope with the demands of chronic illness or physical disability (Christian, 1998; Murphy, Christian, Caplin, & Young, 2007; Raina et al., 2004). As a result, caregivers of children with chronic illness or physical disability are faced with balancing these caregiving demands with other competing family needs, as well as the demands of work in their everyday lives to achieve a satisfactory quality of life (Christian, 1993). Consequently, with these additional demands, many parent caregivers feel less healthy due to the additional time, family, and self-care costs associated with caregiving of children with chronic illness or physical disability (Murphy et al., 2007). Moreover, caregivers experience negative physical, emotional, and functional health consequences that influence their ability to provide care for their child with chronic illness or

⁎ Corresponding author: Becky J. Christian, PhD, RN. E-mail address: [email protected]. 0882-5963/$ – see front matter © 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pedn.2013.10.014

physical disability over time (Raina et al., 2005). As caregivers become overwhelmed they demonstrate greater stress and caregiver strain, leading to decreased quality of life (Klassen et al., 2011; Raina et al., The unintended con2004). Thus, the unintended consequences of caregivsequences of parents providing long-term care for children with ing of children with chronic illness or physical disabilchronic illness or ity at home are increased physical physical disability reand psychological burdens, as well flect the multidimenas increased economic burden resional nature of lated to caregiving expenses and caregiving that redecreased income, which may adversely impact their quality of life quires parent care(Murphy & Christian, 2007). givers to balance the Pediatric nursing includes carcaregiving demands ing for children and educating their of their children with parents and families about health, the needs of the faillness, and child development mily, while collabor(Hockenberry & Wilson, 2011). Creating partnerships with careating with pediatric givers enhances children's care by nurses to incorporate creating a collaborative and nurturnew evidence-based ing environment that incorporates strategies to improve research evidence for the highest the quality of care for quality of care (Christian, 2011, their children. 2013). Thus, the quality of care for children and their caregivers is improved when evidence is translated into everyday clinical practice and pediatric nurses collaborate with parent caregivers (Christian, 2012, 2013). In this issue of the Journal of Pediatric Nursing, seven articles explore different dimensions of caregiving, ranging

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from adolescents learning self-care management of their chronic uncontrolled asthma; caregivers preventing the development of chronic conditions, such as obesity, through healthy lifestyle choices; parents learning reflective functioning to prevent externalizing behaviors in children; caregivers providing care at home for children with chronic illness, physical disability and those who are technologydependent; caregivers adapting to the chronic illness diagnosis over time; caregivers seeking shared communication and caregiving with nurses when technology-dependent children are hospitalized; and PICU nurses caring for dying children and providing support to parent caregivers. Each of these studies illustrates different dimensions of caregiving with respect to children and their parent caregivers, providing new evidence for practice: • Adolescents' (13 to 17 years; N = 29) perceptions of symptoms, feelings, activities, and medication use for uncontrolled asthma were examined through the use of 24-hour written diaries and audio-recorded symptoms to determine the extent of their self-care management and self-regulation with descriptive data from a larger research study (Rhee, Fairbanks, & Butz, 2014). Coughing (96%) and wheezing (79%) were the most frequently reported symptoms, and adolescents reported negative feelings of “tiredness” and being “afraid.” The majority of adolescents were involved in predominantly sedentary to mild activity levels. There was a high discordance between adolescents' selfreported use of medications and their health record, indicating poor treatment adherence. • Caregivers' beliefs about sugar-sweetened beverage (SSB) intake among low income, non-Hispanic Black preschool-age children (2 to 5 years) were explored in a descriptive qualitative study employing the theory of planned behavior framework (Tipton, 2014). Small group interviews were conducted with caregivers (N = 19) at two publicly funded supplemental nutrition clinics to elicit caregivers' beliefs about the advantages and disadvantages of SSB intake for their young children. Behavioral, normative, and control beliefs were elicited from caregivers who described factors that influenced their use of SSB for their preschooler children, including convenience, cost, taste, potential health consequences, availability, and pressure from other parents. • The preliminary effectiveness of an ongoing longitudinal randomized controlled trial of a parenting home visitation program, Minding the Baby, for high-risk first-time mothers was studied to determine the intermediate effects at 1 to 3 years post-intervention of parental reflective functioning on child behaviors [N = 50 mother–child dyads assigned to intervention (n = 24) and control (n = 26) groups] (Ordway et al., 2014). Preliminary effects of the parenting home visitation program at 1 to 3 years post-intervention demonstrated no statistically significant difference in









parental reflective functioning between mothers in the intervention and control groups. However, mothers who received the intervention had children with significantly fewer externalizing behaviors, compared to those in the control group. Maternal caregivers (N = 61) of young children (4 to 36 months) with bronchopulmonary dysplasia (BPD) were studied using a descriptive correlational design to determine associations among sleep quality, stress, caregiver burden, and quality of life (Feeley et al., 2014). Maternal caregivers reported sleeping a mean of 5.8 hours per night. Better sleep quality of maternal caregivers was significantly associated with fewer depressive symptoms, lower stress, and better quality of life; and greater caregiver burden was significantly associated with higher levels of stress. Sleep quality and depressive symptoms were found to be significant predictors of quality of life in maternal caregivers of children with BPD, explaining 22% of the variance. Parent adaptation and family functioning were described through narratives of parents (n = 66 mothers; n = 43 fathers) and children (5 to 8 years; N = 66) with chronic illness (Type 1 diabetes or asthma) in a descriptive quantitative study (Popp, Robinson, Britner, & Blank, 2014). Forty-one percent (n = 27) of all parents were classified as having unresolved feelings about the child's chronic illness diagnosis, regardless of time since diagnosis. Unresolved mothers demonstrated significantly lower family cohesion and expressiveness and greater family conflict, compared to resolved parents; while unresolved fathers demonstrated significantly lower family expressiveness. Children of unresolved parents demonstrated significantly more representations of family conflict in their narratives. A qualitative grounded theory study was conducted to identify parent perceptions (N = 11) and experiences of communicating with nurses about their technologydependent children (4 to 15 years) during hospitalization (Giambra, Sabourin, Broome, & Buelow, 2014). Based on these parent caregiver interviews, the theory of shared communication between parents of technology-dependent children and their nurses was developed, representing the major themes of communication acts (i.e., questioning, listening), communication functions (i.e., explaining, advocating), and communication outcomes (i.e., verifying understanding, negotiating roles) and resulting in mutual understanding of the child's plan of care during hospitalization. A phenomenological study was conducted to explore pediatric intensive care unit (PICU) nurses' (N = 10) experiences in caring for children dying unexpectedly in the PICU (Meyer, 2014). Ten themes were identified to describe the nurses' experiences: comfort, making memories, being there, sequence of caring, spirituality, prolonged death, loaded silence, laughter through tears,

Research Commentary Column professionalism, and lasting impact. One theme, sequence of care, was presented and described in detail, as a progression of caring for the child and family throughout the chaotic experience of the child dying unexpectedly in the PICU. The multiple dimensions of caregiving are highlighted in the translation of research to everyday pediatric nursing practice as demonstrated in these research studies. The nature of caregiving captures the distinctive role of parents as they learn to parent by providing care for their children, teaching children to care for themselves, and making behavioral and lifestyle choices to promote children's health. Caregiving becomes more complex when children have a chronic illness or physical disability and are technology-dependent, requiring parents to balance the child's caregiving demands with their own needs and the needs of their family. With hospitalization, the level of complexity of caregiving increases and necessitates shared communication and collaboration between parents and pediatric nurses to ensure the best quality of care for their children. To that end, the multidimensional nature of caregiving requires that pediatric nurses collaborate with caregivers and incorporate evidence into their practice. In this way, translating research into everyday practice improves the parent caregivers' ability to provide care for their children and results in improved health and quality of life for children.

References Christian, B. J. (2011). Creating partnerships with parents to improve the health of children and adolescents. Journal of Pediatric Nursing, 26, 95–96. Christian, B. J. (1998). Home care for the child and adolescent with chronic illness (pp. 128–148). In B. Vaughn-Cole, M. A. Johnson, J. A. Malone, & B. L. Walker (Eds.), Family Nursing Practice. Philadelphia: Saunders. Christian, B. J. (1993). Quality of life and family relationships in families coping with their child’s chronic illness (pp. 304-312). In S. G. Funk, E. M. Tournquist, M. T. Champagne, & R. A. Weisse (Eds.), Key aspects in caring for the chronically ill: Hospital and home. New York: Springer.

85 Christian, B. J. (2013). The essence of pediatric nursing – Translating evidence to improve pediatric nursing care for children, their parents and families. Journal of Pediatric Nursing, 28, 193–195. Christian, B. J. (2012). Translating research into everyday practice – The essential role of pediatric nurses. Journal of Pediatric Nursing, 27, 184–185. Feeley, C. M., Turner-Henson, A., Christian, B. J., Avis, K. T., Heaton, K., Lozano, D., & Su, X. (2014). Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia. Journal of Pediatric Nursing, 29, 29–38. Giambra, B. K., Sabourin, T., Broome, M. E., & Buelow, J. (2014). The theory of shared communication: How parents of technology-dependent children communicate with nurses on the inpatient unit. Journal of Pediatric Nursing, 29, 14–22. Hockenberry, M. J., & Wilson, D. (2011). Wong's nursing care of infants and children (9th Ed.).St. Louis: Mosby. Klassen, A. F., Raina, P., McIntosh, C., Sung, L., Klaassen, R. J., O’Donnell, M., & Dix, D. (2011). Parents of children with cancer: Which factors explain differences in health-related quality of life. International Journal of Cancer, 129, 1190–1198. Meyer, R. L. (2014). Caring for children who die unexpectedly: Patterns that emerge out of chaos. Journal of Pediatric Nursing, 29, 23–28. Murphy, N. A., & Christian, B. J. (2007). Disability in children and young adults – The unintended consequences. Archives of Pediatric 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. Ordway, M. R., Sadler, L. S., Dixon, J., Close, N., Mayes, L., & Slade, A. (2014). Lasting effects of an interdisciplinary home visiting program on child behavior: Preliminary follow-up results of a randomized trial. Journal of Pediatric Nursing, 29, 3–13. Popp, J. M., Robinson, J. L., Britner, P. A., & Blank, T. O. (2014). Parent adaptation and family functioning in relation to narratives of children with chronic illness. Journal of Pediatric Nursing, 29, 58–64. 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. Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., & Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4, 1–13. Rhee, H., Fairbanks, E., & Butz, A. (2014). Symptoms, feelings, activities, and medication use in adolescents with uncontrolled asthma: Lessons learned from asthma diaries. Journal of Pediatric Nursing, 29, e3–e5. Tipton, J. A. (2014). Caregivers’ psychosocial factors underlying sugarsweetened beverage intake among low income, non-Hispanic Black preschoolers: An elicitation study. Journal of Pediatric Nursing, 29, 47–57.

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