Dataset Information

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

ABSTRACT:

Background

A 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.

Methods

Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.

Results

The 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.

Conclusion

The 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.

SUBMITTER: de Voogd X

PROVIDER: S-EPMC7863486 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

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Publications

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

de Voogd X X Willems D L DL Torensma M M Onwuteaka-Philipsen B D BD Suurmond J L JL

BMC palliative care 20210204 1

<h4>Background</h4>A 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.<h4>Methods</h4>Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in ...[more]

PMID: 33541334

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Project description:BackgroundDegenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.ObjectiveThis study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors.MethodsCarers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.ResultsDCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.ConclusionsCaring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

Project description:BackgroundOwing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness.MethodsA qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews.ResultsWe identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver.ConclusionsThe concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

Dataset Information

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

Background

Methods

Results

Conclusion

Publications

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

Similar Datasets

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