Where are the family caregivers? Finding family caregiver-related content in foundational nursing documents

• Published in: Journal of professional nursing 2020-01, Vol.36 (1), p.76-84
• Main Authors: Cloyes, Kristin G., Hart, Sara E., Jones, Ann Kuglin, Ellington, Lee
• Format: Article
• Language: English
• Subjects: Caregiving; Family caregivers; Informal caregivers; Nursing; Nursing education; Nursing practice; Nursing research
• ISSN: 8755-7223; 1532-8481
• DOI: 10.1016/j.profnurs.2019.06.004

Informal or family caregivers are a substantial component of the U.S. health care system and are essential for addressing the needs of a growing number of U.S. citizens who are aging, managing chronic or disabling conditions, or facing life-limiting illness. The purpose of this study was to examine the representation of family caregiving in a set of foundational documents that shape nursing education, practice standard, and related policy. Electronic copies of these “canonical” documents were systematically mapped for the appearance of language, terms, and concepts related to family caregiving. Additionally, relevant passages of caregiving-related text were coded for content, phrasing, and meaning. Few meaningful references were found, exposing how the nursing profession may also be perpetuating the role of the family caregiver as unsupported and invisible. When present in the documents, family caregivers were generally situated as background or context for patient care, often as objects and less frequently as agents with influence. These findings are considered within the context of the emerging caregiving public health crisis and family caregiver health outcomes, family caregiver integration into the health care team, nursing education and practice standards, nursing leadership and workforce development, and nursing's policy advocacy role. •Reliance on care provided by family caregivers will increase with growing numbers of older people and those with chronic illnesses.•Family caregiver-related content is sparse in core documents informing nursing education, curricula, and practice standards.•Family caregiver-related competencies (e.g. communication, assessment, support) should be essential education and training for all nurses.•Nursing can lead among health professions in ensuring that related competencies are integrated throughout training and reinforced in practice.