Serving the underserved: Towards improving palliative care for persons experiencing homelessness - PhDData

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Serving the underserved: Towards improving palliative care for persons experiencing homelessness

The thesis was published by Klop, Johanna Theodora, in September 2022, VU University Amsterdam.


A systematic review of 23 studies (Chapter 2) shows that concerns of persons experiencing homelessness were often related to the professionals attitudes and facing serious illness, physical, death and dying. Care needs often involved the attitude of professionals, varying preferences for the involvement of family, and addressing spirituality. Future care preferences varied. Palliative care provision was often hampered by competing priorities, limited insight into the condition, and a lack of palliative care skills among professionals. Palliative care was facilitated by professionals applying a patient-centred approach enhancing spiritual needs, trust and dignity. Training professionals in this approach, and proper organization and accommodation of palliative care were recommended. A semi-structured interview study among 28 spiritual caregivers, street pastors, outreach workers and formerly homeless persons (Chapter 3), shows that stigmatization, characteristics of persons experiencing homelessness, and characteristics of a complex care system are underlying factors explaining the underutilization of care. Person-related barriers to care can be lowered by ensuring personalized care and reciprocal trust between professionals and persons experiencing homelessness. System-related barriers to care can be lowered by the provision of clear information, explanation and communication, quiet facilities, and self-reflecting professionals with patience and enough time. A retrospective medical record study of 61 deceased persons experiencing homelessness in two Dutch shelter-based nursing-care settings (Chapter 4) shows a young age at death, multiple and complex somatic, psychiatric, addiction and social issues, and high symptom burden at the end of life. For 75% of the patients, the end of life was recognized. For 26%, a palliative care team was consulted. The study shows that the end of life was characterized by uncertain prognoses, complicated social circumstances and a high number of transitions. Future improvements concerned interdisciplinary collaboration, more dedicated palliative care facilities and corresponding expertise within shelter settings. A focus group study among nineteen professionals and fifteen severely ill persons experiencing homelessness (Chapter 5) shows that palliative care provision and organization varies between professionals, institutions and cities. Participants expressed that palliative care should at least be characterized by respecting the patient’s autonomy, with trusting relationships between the patient and professional, flexible care, and initiating professionals. A regionally developed consultation intervention, involving a fixed duo of a palliative care professional and a social service professional, was expected to be of added value for both patients and professionals regarding showing respect, collaboration, and knowledge. Training and joint multidisciplinary meetings were expected to be necessary as well. A mixed-methods study with structured questionnaires and semi-structured individual and group interviews with professionals, consultants’ diaries and an implementation diary (Chapter 6) evaluates 34 consultations, 22 multidisciplinary meetings and nine training sessions. Consultations mainly involved palliative care professionals advising social service professionals. Consultation requests were mainly about somatic issues; advice often covered somatic and psychosocial issues. Multidisciplinary meetings were mainly attended by GPs and nurses. Training sessions varied widely in duration and content. Discussed patients were often seriously ill, males, of Dutch origin, residing in 24-hour shelter facilities and aged between 50 and 70. Added value was seen in the collaboration and networks of professionals and improvement of their palliative care competences, and in improving timing and quality of palliative care. Reach (Chapter 7) of the intervention was accomplished by involving social service professionals who were initially involved in the intervention. Regions varied in adoption of the three activities. The intervention was partly implemented according to plan. Professionals in all regions expected to maintain intervention activities in the future. Facilitators lay in the inner setting of the organizations, in characteristics of professionals, and in intervention characteristics. Barriers were identified in the inner setting of the organizations and in intervention characteristics.

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