The Development and Validation of a Tool to Assess the Acuity of Children Receiving Home-Based/Community Palliative Care

Abstract

Emerging Knowledge for Clinical Practice Podium Presentations focusing on the Research Agenda Priority of Health Promotion and Disease Prevention, Presented at NAPNAP’s 37th National Conference on Pediatric Healthcare, March 17, 2016, Atlanta, GA To develop and validate a tool to assess the acuity of children receiving home-based/community palliative care. Each year in the United States, there are more than 500,000 children living every day with a chronic, life-threatening condition who require compassionate, comprehensive, consistent, and coordinated palliative care, supporting both curative and comfort measures. However, many of these children do not receive palliative care services. If they do, there is a paucity of data and information guiding the clinicians with the development of a plan of care (POC) to meet the level of acuity for patient’s and family’s needs. The authors conducted a literature review on acuity tools in pediatric palliative care as well as the domains of pediatric palliative care. The authors developed the instructions, which included the three levels of acuity, prompting questions for each domain, and the tool. The tool addressed each domain needs– emotional, social, and physiological. Within each domain, specific categories were scored according to a Likert Scale a score of 1-5 (1 = Strongly Disagree to 5 = Strongly Agree). To assess content validity of the tool, both the instructions and tool were reviewed by a panel of nine experts in pediatrics and pediatric palliative care (e.g., social work, child life therapy, and nursing), as well as two parents whose children have died. The experts reviewed the tool specifications and the selection of items to ensure the content validity of the survey. Both instructions and tool were sent to each expert reviewer with a content validity index (CVI) score sheet. The content validity reviewers evaluated all items on each survey, rating each item a score on a Likert Scale of 1-5 (1 = Strongly Disagree to 5 = Strongly Agree). Based on the expert reviewers’ feedback regarding the content, the surveys were modified. To assess face validity, six reviewers from various disciplines (e.g., social work, child life therapy, and nursing) provided feedback on the readability and clarity of the instructions and tool and ensured that the items are a good measure of assessing acuity of children receiving home-based/community palliative care The face validity indicated that the instructions and tool appeared to measure what it is supposed to be measuring and to be valid to the participants who would be completing the survey. The survey was determined to be 100% clear and readable. The content validity indicated that the items in the instructions and tool adequately reflected the content domain being measured. The overall content validity index (CVI) score for the instructions and tool was 93% (0.928). Six items were revised since the CVI for each item was < 0.8. All other items were rated strongly agree to agree and with no significant discrepancies among reviewers. The tool was validated with overall significant content and face validity.