Demoralization has been described as a psychological state characterized by helplessness, hopelessness, a sense of failure and the inability to cope.

We conducted a systematic review with qualitative data analysis following PRISMA criteria with the following aims: to review validated assessment instruments of the demoralization syndrome, report main findings regarding demoralization as measured by validated instruments that emerge in the literature, compare and report evidence for the clinical utility of the identified instruments. Utilizing the key word ‘demoralization’ in PubMed and PsycINFO databases, an electronic search was performed, supplemented by Web of Science and manual searches. Study selection criteria included the assessment of medical patients and use of instruments validated to assess demoralization. Seventy-four studies were selected.

Four instruments emerged in the literature. Main findings concern prevalence rates of demoralization, evidence of discriminant validity from major depression, factors associated with demoralization and evidence of clinical utility. The instruments vary in their definition, the populations they aim to assess, prevalence rates they estimate and their ability to discriminate between different conditions. Nonetheless, demoralization appears to be a distinctive psychological state characterized by helplessness, hopelessness, giving up and subjective incompetence. It is not limited to life-threatening diseases such as cancer, but may occur in any type of clinical situation. It is associated with stress and adverse health outcomes.

Studies addressing the incremental value of demoralization in psychiatry and psychology are needed. However, demoralization appears to entail specific clinical features and may be a distinct condition from major depression.

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.

Both family members during ongoing APHC and family members 3–9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.

Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.

The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.