Clinical Practice Guideline for Support of Families of Children With Chronic Conditions

Abstract

The Society of Pediatric Nurses (SPN) recognizes families as instrumental in the care of children with chronic conditions and endorses the important role that the pediatric nurse plays in assessing and supporting families. The mission, vision and core values of SPN further reflect the role of the pediatric nurse as supporters of the health needs of both children and their families. Leaders of SPN have been active in developing resources to support pediatric nursing clinical practice in a variety of settings. The SPN membership identified a need for resources to support the care of children with chronic conditions and their families, and a task force was convened to develop a clinical practice guideline to address some of these needs. The purpose of this clinical practice guideline is to develop and disseminate evidence-based recommendations for pediatric nurses in supporting families of children with chronic conditions, particularly those with complex needs. A review and synthesis of the literature on families of children with chronic conditions led to recommendations addressing four domains of family support: physical and mental health, caregiving, social and financial. These domains are also consistent with those articulated in existing measures of family functioning in the pediatric chronic care literature.(Jastrowski et al., 2011Jastrowski M.K.E. Khan K.A. Ladwig R.J. Weisman S.J. The impact of pediatric chronic pain on parents' health-related quality of life and family functioning: Reliability and validity of the PedsQL 4.0 family impact module.Journal of Pediatric Psychology. 2011; 36: 517-527Google Scholar; Lewandowski et al., 2010Lewandowski A.S. Palermo T.M. Stinson J. Handley S. Chambers C.T. Systematic review of family functioning in families of children and adolescents with chronic pain.The Journal of Pain. 2010; 11: 1027-1038Abstract Full Text Full Text PDF PubMed Scopus (142) Google Scholar) Within each domain, recommendations focus on areas for assessment and intervention for parents, family caregivers and siblings to support their overall wellbeing and coping, which has the potential to also have positive impacts on the child with a chronic condition. The SPN Board of Directors and other members of the organization's leadership team are pleased to offer this clinical practice guideline to Journal of Pediatric Nursing readers, in the hopes that it will serve as a useful resource for pediatric nurses in a variety of clinical settings and that it will foster changes in clinical practice that better support families of children with chronic conditions. SPN members will also soon be able to access materials that support this clinical practice guideline, including a webinar that outlines strategies for incorporating the guideline recommendations into practice and specialty booklets that more closely examine several topics within the guideline. The Chronic Conditions Clinical Practice Guideline can be accessed on SPN's website by selecting “Practice” on the top navigation bar, then clicking on Clinical Practice Guidelines. Here you may download the Chronic Conditions Guideline. This Clinical Practice Guideline is authored by the SPN Chronic Conditions CPG Taskforce: Jennifer Baird, PhD, MPH, MSW, RN, CPN. Laura H. Hays, MSN, APRN, CPNP-PC. Elizabeth Straus, MN, RN. Nancy M. Terres, PhD, RN. Lori Jean Williams, DNP, RNC-NIC,CCRN, NNP-BC.