"Being Sick Is a Full-Time Job": A Job Analysis of Managing a Chronic Illness
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Overview
Overview
Description
Research Objective:The purpose of this study was to identify the duties, tasks,knowledge, skills, abilities, and resources needed for patients tomanage chronic illness.Self-management is a struggle for individuals with chronicillnesses. For many, the work involved in managing a chronicillness can feel like a full time job. The multitude of tasks andactivities that are required are often not captured by the constructof self-management. This study explored managing a chronicillness in an innovative way by combining both a human resourcesand nursing lens, with the premise that managing a chronic illnessis work and it should be analyzed as a job.Study Design:In this descriptive qualitative study, 3 focus groups (FGs) with atotal of 29 participants, from across the U.S., were conducted inperson (FG 1) or via video conferencing (FG 2 and 3) due to COVID19. A recruitment yer was shared via email to a random selectionof university employees in the southeastern U.S. and posted onFacebook pages of the research team. Nominal group techniquewas used to collect focus group data about activities engaged inmanaging their chronic illnesses, health, and healthcare. Datawere analyzed using thematic analysis. Themes were used tocreate a job description identifying the duties, tasks, knowledge,skills abilities, and resources needed for chronic illness self-management.Population Studied:People 18 years of age or older with at least one chronic illnessthat is currently being managed by a healthcare provider.Principal Findings:1/14/2021 Submission Completedhttps://academyhealth.confex.com/academyhealth/2021arm/general/papers/index.cgi?stepsonly=1&username=47144&password=457430 2/4The job of a patient included 5 duties: self-care, relationshipmanagement, resource management, coordination, andresearch/education. Each duty encompassed 6 tasks. Each taskincluded the associated knowledge, skills, abilities, and resourcesnecessary to be successful completing the task identied. Forexample, below is one of the six tasks related to coordination:Duty: Coordination- Organize and schedule all appointments,paperwork, and medical historyTask:Knowledge, Skillsand/or, AbilitiesNeeded to PerformTaskResources Needed toPerform TaskCommunicate andadvocate for self byasking questions,relaying medicalhistory withproviders, ocestaff, and others(friends, family, andemployers), askingfor help whenneeded.● Illness knowledge● Health caresystem knowledge● Health literacy● Computer literacy● Communication(includes oral andwritten) skills● Social Skills● Assertivenessskills● Potential supportpersons/groups● Computer/Internet● Phone● Information● Time● EnergyConclusions:Health care providers focus on helping patients through symptommonitoring and management, lifestyle changes (i.e. diet andexercise), and treatment/medication adherence. However,individuals with chronic illness described many more tasksassociated with self-management. Without considering a patientwork through a holistic lens that includes these additional tasksand responsibilities, the success of self-managementinterventions is likely limited.Implications for Policy or Practice:Developing evidence-based interventions that address the keyknowledge, skills, abilities, and resources needed to successfullycarry out self-management activities are needed to reduce theburden of managing chronic illnesses, improve self-managementbehaviors, and enhance patient quality of life.
