Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

Abstract

Background An important aim of palliative care is to improve the family’s and patient’s quality of life. To ensure quality of life for migrant patients’ families, the objective of this study was to get insight into the dignity of informal caregivers. This could provide insight on family-centered care for migrant patients. Methods 20 semi-structured interviews with informal caregivers with a Turkish, Moroccan or Surinamese migration background living in the Netherlands were analyzed thematically. Results We found the dignity of the patient and the dignity of the informal caregiver were strongly related. Most important for the dignity of the informal caregiver was to ensure good care for and preserve the dignity of the patient. Ensuring good care encompassed advocating for good and dignified care and wishes of the patient. For many caregivers, it also included delivering care to the patient themselves or with other family members, despite having to give up a part of their own lives. Giving care themselves was part of maintaining a good relationship, it could cater to the patient’s preferences or preserve the patient’s dignity, and it could come with valuable aspects such as times for good conversations. The informal caregiver’s dignity and the patient’s dignity were often compromised simultaneously. When informal caregivers felt healthcare professionals were impairing the dignity of the patient, their own dignity suffered. Also, dignified behavior by the patient such as thankfulness influenced the informal caregiver’s dignity positively, undignified behavior of the informal caregiver themselves, such as showing their emotions to significant others could influence it negatively. According to informal caregivers, healthcare professionals can help them preserve their dignity by taking their advice about the patient seriously, informing them about the disease and the patient’s prognosis, and dealing respectfully with value differences at the end of life. Conclusion The dignity of migrant patients’ informal caregivers in the last phase of the patient’s life is entwined with ensuring good care for and dignity of the patient. Healthcare professionals could strengthen the informal caregiver’s dignity by supporting their role.