The work of managing a chronic illness: A job description

Abstract

Rationale: Self-management of a chronic illness is a struggle for many patients. There is substantial evidence that patients are not as successful as they and their providers would like. Considering patient self-management through an innovative and diverse lens could help patients, providers and the health care system to consider novel changes to improve success.

Aims and objectives: To provide a complete view of patient work by utilizing the human resources management practice of job analysis to develop an initial job description for patients suffering from chronic illness.

Methods: Study design was descriptive qualitative with analysis aiming to identify those reoccurring ideas from the data. Thirty patients, with at least one chronic illness, in three focus groups were assembled for this study. Verbatim recordings and notes were used to categorize the data provided. Five coders analyzed the data independently, and jointly met to discuss the themes identified. Demographic data was collected via surveys.

Results: Patients with chronic illness engage in five primary 'job' duties including self-care (actions taken to effectively manage physical and psychological symptoms), managing relationships (effective management of relationships with employers, family, friends and providers to ensure the best outcomes), managing resources (understanding and managing finances, health and prescription medication insurance), coordination (managing and scheduling visits to providers) and research/education (gathering information and conducting research relative to all aspects of managing one's illness). Relevant knowledge, skills, abilities (KSAs) and other resources were identified that are necessary for patients to effectively perform the five job duties.

Conclusions: Creating a job description for the 'job' of patient is a crucial step in understanding the work chronically ill patients undertake. Knowing the duties, their associated tasks and KSAs, and resources required to perform those tasks enables patients and their providers and advocates to better identify ways to assist, relieve and encourage these patients in order to maximize patient success.

Keywords: chronic disease; focus groups; human resources; job description; self-management; work performance; workload.