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

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 ◽  
Value Differences ◽  
Centered Care ◽  
Family Centered

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.

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

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.

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

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.

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

2021 ◽  
Vol 20 (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.

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

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.

Shared Perspectives of Patients With Advanced Cancer and Their Informal Caregivers on Essential Aspects of Health Care: A Qualitative Study

2021 ◽  
pp. 082585972198952
Author(s):  
Janneke van Roij ◽  
Bibi de Zeeuw ◽  
Myrte Zijlstra ◽  
Niels Claessens ◽  
Natasja Raijmakers ◽  
...  
Keyword(s):  
Health Care ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Structured Interviews ◽  
Disease Trajectory ◽  
Organization Of Care ◽  
Health Care Preferences

Objective: The aim of this study is to explore the essential aspects of health care according to patients with advanced cancer and their informal caregivers by using a dyadic approach. Methods: Seven focus groups and 7 in-depth semi-structured interviews were conducted. Patients with advanced cancer and informal caregivers were recruited between January 2017 and June 2017 in 6 Dutch hospitals. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach. For this analysis Atlas.ti was used. Results: There was congruence between the aspects mentioned by patients and their informal caregiver. Two essential aspects of quality of care arose: “relation” and “organization of care.” Regarding relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory, continuity of care, and well-organized logistics tailored to their needs. Conclusion: This study generates awareness among health care professionals that patients with advanced cancer and their relatives have similar perspectives on essential aspects of care and may increase anticipation to meet health care preferences to optimize care.

scholarly journals Factors Related to Psychosocial Quality of Life for Children with Cerebral Palsy

2014 ◽  
Vol 2014 ◽  
pp. 1-6 ◽  
Author(s):  
D. W. Tessier ◽  
J. L. Hefner ◽  
A. Newmeyer
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Symptom Severity ◽  
Univariate Analysis ◽  
Physical Symptoms ◽  
Outcome Variable ◽  
Family Centered Care ◽  
Centered Care ◽  
Family Centered

Background.Current health services interventions focus on the treatment of the musculoskeletal impairments of cerebral palsy (CP). The goal of this study was to explore whether the severity of physical symptoms correlates with psychosocial quality of life (QOL) among pediatric patients with CP.Methods.A sample of 53 caregivers of children with CP was surveyed and health status information was extracted from patient medical records. Descriptive analysis explored the association between the main outcome variable, psychosocial QOL (CP QOL-child), and patient demographics, comorbidity (e.g., visual, hearing and feeding impairments, language delays, and epilepsy), CP severity (GMFCS), and the receipt of family centered care (MPOC-20).Results.Child psychosocial QOL decreased with increasing comorbidity but was not associated with CP symptom severity or any measured demographic factors. Reporting high levels of family centered care (FCC) was associated with higher psychosocial QOL in univariate analysis but was not significant when controlling for comorbidities.Conclusion.There is no clear connection between symptom severity and psychosocial QOL in children with CP. Comorbidity however is strongly associated with psychosocial QOL. Focusing on reducing CP comorbidities could have a positive impact on psychosocial QOL.

A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers

2017 ◽  
Vol 99 ◽  
pp. 107-110 ◽  
Author(s):  
Christopher Hartnick ◽  
Gillian Diercks ◽  
Vanessa De Guzman ◽  
Elizabeth Hartnick ◽  
Jeanne Van Cleave ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Care Coordination ◽  
Family Centered Care ◽  
Centered Care ◽  
Quality Study ◽  
Family Centered

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

2021 ◽  
Vol 20 ◽  
pp. 153473542199008
Author(s):  
Noah Samuels ◽  
Menachem Oberbaum ◽  
Eran Ben-Arye
Keyword(s):  
Quality Of Life ◽  
Herbal Medicine ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Data Use ◽  
Integrative Oncology ◽  
Oncology Patients ◽  
Dietary Changes ◽  
Related Data

Integrative physicians (IPs) working in supportive and palliative care are often consulted about the use of herbal medicine for disease-related outcomes. We examined 150 electronic files of oncology patients referred to an IP consultation for demographic and cancer-related data; use of herbal medicine for disease-related outcomes; and narratives of patients and informal caregivers describing their expectations from the IP consultation. Over half (51.3%) of patients reported using herbal medicine for disease-related outcomes, more so among those adopting dietary changes for this goal ( P < .005). Most (53.3%) were accompanied by an informal caregiver, especially those using herbal medicine (66.2%, P = .002) or adopting dietary changes (69.8%, P < .001). The majority of patients (84.4%) expected the IP to provide guidance on the use of herbal medicine for disease-related outcomes (e.g., “curing,” “shrinking,” “eradicating” and “cleansing”). Most caregivers (88.8%) expressed a similar expectation, with some having additional questions not mentioned by the patient. IPs need to identify and understand expectations of oncology patients and their informal caregivers, helping them make informed decisions on the effective and safe use of herbal medicine. The IP may need to “reframe” expectations regarding the ability of herbal medicine to treat cancer and immunity, to more realistic quality of life-focused goals.

scholarly journals Preliminary Investigation of the Usability Characteristics Required for Wound Management Products by Semi-Structural Interview of Medical Staff

Pharmacy ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 152
Author(s):  
Kaoru Hirose ◽  
Yayoi Kawano ◽  
Nahoko Shigeno ◽  
Yoshikatsu Mizutani ◽  
Hiraku Onishi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thematic Analysis ◽  
Healthcare Professionals ◽  
Preliminary Investigation ◽  
Wound Management ◽  
Medical Professionals ◽  
Development Projects ◽  
Structured Interviews ◽  
Care Clinic

Consideration of drug usability characteristics is important during the design process. Although many wound management products have been developed in recent years, there are few studies on their usability. We investigated the needs and characteristics of wound management products required by medical professionals, so as to consider these in future development projects. Semi-structured interviews were conducted in a group of healthcare professionals. Interview responses were analyzed based on thematic analysis. Four themes common to all facilities were secondary wounds, adaptability of materials, convenience, and physicochemical properties. Economic efficiency of medical care was found to be considered only at the hospital, and quality of life of patients was found to be considered only at the home palliative care clinic. Requirements for wound management products can be affected by participants’ roles and their facility settings. However, there were needs common to all fields that all wound management products should aim to incorporate.

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