Solis Ericka C, Carlier Ingrid V E, Kamminga Noëlle G A, van Hemert Albert M
Department of Psychiatry, Leiden University Medical Center, Leiden, Netherlands.
Department of Psychiatry and Medical Psychology, Maastricht University Medical Center, Maastricht, Netherlands.
Front Psychiatry. 2025 Jun 20;16:1505396. doi: 10.3389/fpsyt.2025.1505396. eCollection 2025.
When patients with persistent depressive disorder (PDD) respond insufficiently to available evidence-based treatments, depression treatment guidelines recommend psychiatric rehabilitation through self-management. Preferably, the intervention should involve the patient's informal caregiver.
To gain insight into the healthcare needs of PDD patients and their caregivers and to facilitate the implementation of a self-management program, we conducted individual semi-structured interviews with 28 PDD patients and 9 informal caregivers regarding their self-management/coping and needs. Transcripts were analyzed with Grounded Theory using three sensitizing concepts (PDD experience, self-management/coping, needs).
Patients had 9 main themes and caregivers had 11 main themes. Patients and caregivers shared 9 main themes, pertaining to powerlessness, patients' identity changes, shame/stigma, relationship dissatisfaction, family suffering, self-management attitudes, self-management strategies, coping support, and coping complications. While self-management attitudes of patients were mixed, those of caregivers were positive. Care needs of both groups centered on psychoeducation and communication skills development. Caregivers reported urgently needing support in dealing with patients' suicidal behavior.
Our findings underscore the profound burden of PDD on both patients and their informal caregivers. We strongly recommend that healthcare professionals encourage and facilitate the development of self-management in depressed patients early in the treatment process and involve informal caregivers, particularly within suicide prevention strategies.
https://onderzoekmetmensen.nl/en/trial/55681, Netherlands Trial Register Identifier NL5818.
当持续性抑郁症（PDD）患者对现有的循证治疗反应不足时，抑郁症治疗指南推荐通过自我管理进行精神康复。最好是，干预措施应包括患者的非正式照料者。
为了深入了解PDD患者及其照料者的医疗保健需求，并促进自我管理项目的实施，我们对28名PDD患者和9名非正式照料者就他们的自我管理/应对方式及需求进行了个体半结构式访谈。使用扎根理论，通过三个敏感概念（PDD经历、自我管理/应对方式、需求）对访谈记录进行了分析。
患者有9个主要主题，照料者有11个主要主题。患者和照料者共有9个主要主题，涉及无能为力感、患者身份变化、羞耻/污名、关系不满意、家庭痛苦、自我管理态度、自我管理策略、应对支持和应对并发症。患者的自我管理态度不一，而照料者的态度则较为积极。两组的护理需求都集中在心理教育和沟通技能培养上。照料者报告迫切需要在应对患者自杀行为方面获得支持。
我们的研究结果强调了PDD给患者及其非正式照料者带来的沉重负担。我们强烈建议医疗保健专业人员在治疗过程早期鼓励并促进抑郁症患者自我管理的发展，并让非正式照料者参与其中，尤其是在自杀预防策略方面。
https://onderzoekmetmensen.nl/en/trial/55681，荷兰试验注册标识符NL5818。
