Expectations of Patients and Their Informal Caregivers from an Integrative Oncology Consultation

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.

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The Impact of COVID-19 on Informal Caregivers in the US

International Journal of Aging Research ◽

10.28933/ijoar-2021-07-0705 ◽

2021 ◽

pp. 87

Author(s):

Keyword(s):

Quality Of Life ◽

Family Caregivers ◽

Caregiver Burden ◽

Social Connectedness ◽

Informal Caregiver ◽

Informal Caregivers ◽

Early Research ◽

The Us ◽

The Impact

Background: Caregiver burden has negative effects on mental and physical health along with quality of life. Meanwhile, social and physical distancing protocols during the COVID-19 pandemic have created additional impacts on informal caregiving in a rapidly changing environment. Early research over the past year suggests that the pandemic has caused increased caregiver burden as well as caregiving intensity among these individuals. Purpose: Our primary purpose in this informational literature review is to describe the impacts of the pandemic on informal caregiver burden and the sudden shift in roles and responsibilities as a result of pandemic-related changes in caregiving. This review will describe emerging effects on various aspects of health among informal caregivers and explore the growing need to support unpaid caregiving during this time. Methods: A streamlined search was conducted to fit the scope of this review, with key terms determined to identify relevant publications. Common research databases and up-to-date mainstream resources were utilized. Notably, we focused on research published or released since March 2020, primarily rapidly reviewed studies, to align with the timing of the COVID-19 pandemic in the US. Results: Early research suggests that the pandemic has worsened caregiver burden and increased caregiving intensity and hours of care among unpaid, informal family caregivers. Reported health impacts include higher stress, pain, and depression, along with decreased social connectedness and quality of life. Notably, however, COVID-related research generally does not focus on the positive aspects of caregiving, such as its role as a source of purpose in life, creating an opportunity to explore ways to boost certain valuable personal resources among caregivers. Conclusions: Informal family caregivers face their own negative health outcomes and distress as a result of greater caregiver burden, intensity, and the changing landscape of caregiving during the ongoing COVID-19 pandemic. Immediate policy and support recommendations should be considered to alleviate informal caregiver burden and provide ongoing resources over the longer term. In addition, future work should explore the potential of boosting positive resources such as resilience and purpose to ease caregiver burden.

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

10.21203/rs.3.rs-29756/v2 ◽

2020 ◽

Author(s):

Xanthe de Voogd ◽

Dick Willems ◽

Marieke Torensma ◽

Bregje Onwuteaka-Philipsen ◽

Jeanine Suurmond

Keyword(s):

Quality Of Life ◽

Healthcare Professionals ◽

Informal Caregiver ◽

Informal Caregivers ◽

Good Care ◽

Structured Interviews ◽

Positive Interaction ◽

Migrant Communities ◽

Centered Care

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.

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

10.21203/rs.3.rs-29756/v3 ◽

2020 ◽

Author(s):

Xanthe de Voogd ◽

Dick Willems ◽

Marieke Torensma ◽

Bregje Onwuteaka-Philipsen ◽

Jeanine Suurmond

Keyword(s):

Quality Of Life ◽

Healthcare Professionals ◽

Informal Caregiver ◽

Informal Caregivers ◽

Good Care ◽

Structured Interviews ◽

Positive Interaction ◽

Migrant Communities ◽

Centered Care

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.

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

BMC Palliative Care ◽

10.1186/s12904-021-00721-6 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

X. de Voogd ◽

D. L. Willems ◽

M. Torensma ◽

B. D. Onwuteaka-Philipsen ◽

J. L. Suurmond

Keyword(s):

Quality Of Life ◽

Healthcare Professionals ◽

Informal Caregiver ◽

Informal Caregivers ◽

Good Care ◽

Structured Interviews ◽

Positive Interaction ◽

Migrant Communities ◽

Centered Care

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.

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Impact of fatigue on quality of life in oncology patients

Seminars in Hematology ◽

10.1053/shem.2000.18119 ◽

2000 ◽

Vol 37 (4B) ◽

pp. 14-17 ◽

Cited By ~ 21

Author(s):

Gregory A. Curt

Keyword(s):

Quality Of Life ◽

Oncology Patients

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Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

BMJ Open ◽

10.1136/bmjopen-2020-046600 ◽

2021 ◽

Vol 11 (6) ◽

pp. e046600

Author(s):

Anne-Marie Hill ◽

Rachael Moorin ◽

Susan Slatyer ◽

Christina Bryant ◽

Keith Hill ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Randomised Controlled Trial ◽

Usual Care ◽

Controlled Trial ◽

Informal Caregivers ◽

Care Recipient ◽

Care At Home ◽

Randomised Controlled

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

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