Developing a National Recommendation for Clinical Recording of the Support of Informal Caregivers in Specialized Palliative Care: A Delphi Study

Objective(s)Numerous studies have tested support for informal caregivers to palliative care patients to prevent the risk of poor psychosocial and physical outcomes during caregiving and in bereavement. However, a literature search revealed that no systematic official clinical records are set up for informal caregiver care. This study aimed to develop a national recommendation for utilizing official clinical records for informal caregiver care by carrying out a Delphi study.MethodsThis study was undertaken as a national study in Denmark in specialized palliative care in accordance with Guidance on Conducting and Reporting Delphi Studies in palliative care, a consensus-building 3-round Delphi technique. A systematic literature review was performed to inform the drafting of 41 explorative statements, and clinical professionals in specialized palliative care evaluated statements using a 5-point Likert scale. Statements with >75% agreement were considered endorsed.ResultsConsensus was reached regarding the need for palliative care teams to document care provided to family caregivers in official medical records under the caregiver's own name rather than in the patient's medical records. In total, <i>n</i> = 240 responded to the Delphi Round I (48%) and <i>N</i> = 174 (34%) in Delphi Round II and <i>n</i> = 9 (100%) in Delphi Round III of clinical experts. Of the initial 41 statements, <i>n</i> = 16 statements reached 78-100% endorsement and comprised the final recommendations agreeing for instance that documentation of informal caregiver interventions must be carried out in accordance with the general guidelines for record keeping applicable for all healthcare professionals.ConclusionsInitiating official clinical records for informal caregivers has the possibility of bringing clarity, focus and emphasis on identifying caregiver's needs, providing better caregiver care, and more cohesive follow up on interventions in the healthcare system.