Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

BMC Palliative Care

D. L. Willems¹  J. L. Suurmond²  M. Torensma²  X. de Voogd²  B. D. Onwuteaka-Philipsen³ 

[1] Amsterdam Public Health Research Institute, Van Boechorstraat 7, Postbus 7057, 1007 MB, Amsterdam, Netherlands;Department of Ethics, Law and Humanities, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, Netherlands;Expertise Centre for Palliative Care, Amsterdam UMC, Boelelaan 1117, Postbus 7057, 1007 MB, Amsterdam, Netherlands;Department of Public and Occupational Health, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, Netherlands;Amsterdam Public Health Research Institute, Van Boechorstraat 7, Postbus 7057, 1007 MB, Amsterdam, Netherlands;Department of Public and Occupational Health, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, Netherlands;Amsterdam Public Health Research Institute, Van Boechorstraat 7, Postbus 7057, 1007 MB, Amsterdam, Netherlands;Expertise Centre for Palliative Care, Amsterdam UMC, Boelelaan 1117, Postbus 7057, 1007 MB, Amsterdam, Netherlands;

关键词: Caregivers;    Dignity;    Caregiver needs;    Palliative care;    Migrants;    End-of-life care;    Qualitative research;   

DOI  :  10.1186/s12904-021-00721-6

来源: Springer

【 摘 要 】

BackgroundA key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients.MethodsTwenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.ResultsThe dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients’ dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient’s wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient’s preferences and help preserve the patient’s dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver’s dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient’s dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life.ConclusionThe dignity of migrant patients’ informal caregivers in the last phase of a patient’s life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

【 授权许可】

CC BY