“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

2020 ◽  
Author(s):  
Susan Law ◽  
Ilja Ormel ◽  
Stephanie Babinski ◽  
Kerry Kuluski ◽  
Amélie Quesnel-Vallée
Keyword(s):  
Qualitative Interviews ◽  
Secondary Analysis ◽  
System Level ◽  
Care Providers ◽  
Healthcare Provision ◽  
Care Coordinator ◽  
Loved One ◽  
Unpaid Caregiver ◽  
Caregiving Roles

Abstract Background Stepping into the role of an unpaid caregiver to offer help for a family member or friend is often considered a natural expectation of partners or family members. In Canada, the contributions of caregivers are substantial in healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We provide some examples of system-level policy and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations. We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team.

scholarly journals “Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Susan Law ◽  
Ilja Ormel ◽  
Stephanie Babinski ◽  
Kerry Kuluski ◽  
Amélie Quesnel-Vallée
Keyword(s):  
Qualitative Interviews ◽  
Secondary Analysis ◽  
System Level ◽  
Care Providers ◽  
Healthcare Provision ◽  
Care Coordinator ◽  
Loved One ◽  
Unpaid Caregiver ◽  
Policies And Programs

Abstract Background Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

scholarly journals Bilingual health communicators:role delineation issues

2000 ◽  
Vol 23 (3) ◽  
pp. 104 ◽  
Author(s):  
Clair Matthews ◽  
Maree Johnson ◽  
Cathy Noble
Keyword(s):  
Language Proficiency ◽  
Health Care Services ◽  
Language Skills ◽  
Secondary Analysis ◽  
Collaborative Group ◽  
Health Staff ◽  
Care Providers ◽  
Care Services ◽  
Frequent Use

Managers of health care services are seeking new opportunities to improve communication with clients who havelimited English proficiency. An increase in bilingual health staff and the frequent use of their language skills in patientencounters provides opportunities but also brings with it confusion surrounding the role of interpreters and bilingualhealth staff. Secondary analysis of transcripts from 18 focus groups with monolingual and bilingual health staff has provided amethod of distinguishing the roles of these complementary communicators. This paper clarifies the roles of interpretersand bilingual communication facilitators using seven key features: scope of language, language proficiency, nature ofcommunication/interaction, nature of the contact and relationship, client responsibilities, and relationship with otherhealth care providers. We discuss differences in how bilingual health staff use language when providing care, andalternative types of interactions interpreters could adopt to extend their current role. A collaborative group ofcommunicators located within a health team is proposed, that is able to identify need and select the best communicatorfor the task.

scholarly journals Determinants of Hearing Aid Use Among Older Americans With Hearing Loss

2018 ◽  
Vol 59 (6) ◽  
pp. 1171-1181 ◽  
Author(s):  
Michael M McKee ◽  
HwaJung Choi ◽  
Shelby Wilson ◽  
Melissa J DeJonckheere ◽  
Philip Zazove ◽  
...  
Keyword(s):  
Hearing Loss ◽  
Health Care Providers ◽  
Hearing Aids ◽  
Qualitative Interviews ◽  
Insurance Coverage ◽  
Secondary Analysis ◽  
Care Providers ◽  
Data Set ◽  
Older Americans ◽  
Nationally Representative

Abstract Background and Objectives Hearing loss (HL) is common among older adults and is associated with significant psychosocial, cognitive, and physical sequelae. Hearing aids (HA) can help, but not all individuals with HL use them. This study examines how social determinants may impact HA use. Research Design and Methods We conducted an explanatory sequential mixed methods study involving a secondary analysis of a nationally representative data set, the Health and Retirement Study (HRS; n = 35,572). This was followed up with 1:1 qualitative interviews (n = 21) with community participants to clarify our findings. Both samples included individuals aged 55 and older with a self-reported HL, with or without HA. The main outcome measure was the proportion of participants with a self-reported HL who use HA. Results and Discussion Analysis of HRS data indicated that younger, nonwhite, non-Hispanic, lower income, and less-educated individuals were significantly less likely to use HA than their referent groups (all p values < .001). Area of residence (e.g., urban) were not significantly associated with HA use. Qualitative findings revealed barriers to HA included cost, stigma, vanity, and a general low priority placed on addressing HL by health care providers. Facilitators to obtaining and using HA included family/friend support, knowledge, and adequate insurance coverage for HA. Implications Many socioeconomic factors hinder individuals’ ability to obtain and use HA, but these obstacles appeared to be mitigated in part when insurance plans provided adequate HA coverage, or when their family/friends provided encouragement to use HA.

A Qualitative Study to Explore the Needs of Lung Transplant Caregivers

2020 ◽  
Vol 30 (3) ◽  
pp. 243-248
Author(s):  
Ashley Yagelniski ◽  
Nicola Rosaasen ◽  
Louise Cardinal ◽  
Mark E. Fenton ◽  
Julian Tam ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Care Providers ◽  
Lung Transplant ◽  
Care Providers ◽  
Loved One ◽  
Transplant Center ◽  
Semistructured Interviews ◽  
Emerging Themes ◽  
Transplant Candidates

Introduction: Providing support throughout the lung transplant process is an intensive task, which requires a dedicated caregiver. The needs of caregivers who must relocate with their loved one receiving the transplant are currently unknown. The objective of this study is to explore experiences and perceptions of lung transplant caregivers identified from a satellite clinic to inform the development of educational resources. Methods: A qualitative study with a phenomenology approach was undertaken with individuals who have taken on the role of a caregiver for lung transplant candidates or recipients and must travel to the specialized transplant center. Semistructured interviews were conducted with 12 caregivers. Interviews conducted by phone were audio-recorded and then transcribed verbatim. NVivo software was used to code the data and identify emerging themes. Results: Ideas were classified into the following 4 themes: (1) the stress of being a caregiver, (2) caregivers undertake a variety of roles, (3) caregivers require support, and (4) satisfaction with health care providers. Even though the caregivers lived an average of 7.1 (standard deviation 2) hours from the surgical transplant center, all expressed satisfaction with the level of care that they received. Caregivers identified several stressors during the transplant process and described various strategies for coping. Conclusion: Caregivers shared their experiences on the transplant process. It was evident that being a caregiver was a stressful and supports were necessary for those undertaking this role. These insights will help inform the development of a new educational resource for patients and caregivers.

‘Sometimes you need to think outside their boxes’: An Examination of the Voice of Black Minority Ethnic Women in Post-Devolution Scotland

2014 ◽  
Vol 23 (4) ◽  
pp. 419-444
Author(s):  
Josephine Casserly
Keyword(s):  
Qualitative Interviews ◽  
Secondary Analysis ◽  
Third Sector ◽  
Political Life ◽  
Primary Data ◽  
Political Processes ◽  
Focus Group Data ◽  
Feminist Theories ◽  
The Voice ◽  
Minority Ethnic

This article explores the voice of black minority ethnic (BME) women in devolved Scotland. Particular attention is given to examining multicultural policies and devolved political processes and how these impact on the position of BME women in the political life of Scotland. The study is based on secondary analysis of existing survey and focus group data, and primary data drawn from qualitative interviews conducted with a sample of respondents from political and non-governmental organisations. Drawing on feminist theories of multiculturalism, culture is perceived as dynamic and contested and the research depicts BME women as agents engaged in shaping Scotland and their own cultures. The findings show that devolution has created a political opportunity structure more favourable to the voices of BME women. However, this voice remains quiet and is limited by barriers within and outside of BME communities. The research also highlights the role of third sector organisations in enabling the voice of BME women. The author concludes by arguing that successive devolved governments’ promotion of multiculturalism in Scotland has benefited BME women but with important limitations.

The role of inflammatory cytokines in the pathogenesis of premature labor in multiple pregnancy as a result of ART

2016 ◽  
pp. 73-76
Author(s):  
B.M. Ventskivskiy ◽  
◽  
I.V. Poladych ◽  
S.O. Avramenko ◽  
◽  
...  
Keyword(s):  
Assisted Reproductive Technology ◽  
Inflammatory Cytokines ◽  
Proinflammatory Cytokines ◽  
Local Level ◽  
Multiple Pregnancy ◽  
Reproductive Technology ◽  
System Level ◽  
Premature Labor ◽  
Pro Inflammatory Cytokines

In recent years there has been an increase in the frequency of multiple pregnancies and the associated perinatal losses. It is a result of multiple pregnancy in ART refers to a high-risk gestation, at which premature births occur in 2 times more often than in singleton pregnancies. The objective: to determine the role of pro-inflammatory cytokines in the pathogenesis of premature labor in multiple pregnancy, as a result of assisted reproductive technology. Patients and methods. to determine the pro-inflammatory cytokines that all pregnant with bagtopliddyam held immunosorbent assay, defined concentrations of interleukin (IL) in serum and cervical mucus. Results. The analysis of the levels of pro-inflammatory cytokines (IL-1, IL-8) in the test environment, found high concentrations in the surveyed women with multiple pregnancy, due to the use of ART, compared with spontaneous multiple and singleton pregnancy. Increased concentration of proinflammatory cytokines in patients with multiple pregnancy by ART is associated with their synthesis at the system level, it stimulated foci of inflammation in the female genitals and extragenital localization. This correlates with the clinical data and statistical analysis, patients with multiple pregnancy as a result of ART had weighed infectious-inflammatory history. Conclusion. The study showed that elevated levels of proinflammatory cytokines in the systemic and local level in patients with multiple pregnancy due to ART, typical for women with miscarriage, because of the physiological course of pregnancy characterized by the predominance of anti-inflammatory cytokines that prevent rejection of the fetus as a foreign factor. Based on the data obtained proved the role of systemic inflammatory factors in the genesis of preterm labor in women with a multiple pregnancy, as a result of assisted reproductive technology. Key words: multiple pregnancy, assisted reproductive technology, premature birth, interleukine-1, interleukine-8.

scholarly journals Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

SAGE Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. 215824401983445
Author(s):  
Linda Rykkje ◽  
Oscar Tranvåg
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Qualitative Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Memory Clinics ◽  
Male Caregivers ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
At Home

More than 80,000 Norwegians live with dementia. Most caregivers for people with dementia are spouses, and women outnumber men. Due to an aging population, and women’s higher risk of dementia as well as men’s increased life expectancy, the number of male caregivers will rise. There are some differences in the caregiving roles of men and women. Research suggest that males report lower burden and depression than female caregivers, but some men struggle to adjust to the caregiver role, and men are less likely to access health care services. The aim of this study is to explore the experiences of husbands engaged in caregiving for their home-dwelling spouse with dementia. This knowledge will add to the growing body of research about men in the context of dementia care and may raise gender awareness. The method is qualitative interviews with hermeneutical interpretation. The participants are five husbands recruited from two Hospital Memory Clinics in Norway. The results portray how the husbands managed their everyday challenges, and how they adapted to changes, experiences of loss and bereavement, and how they redefined personal freedom and expanded their responsibilities. Acknowledging the rewards of caregiving, the husbands found their life meaningful and they were thriving in their caregiving role. Health care personnel should recognize and respect the challenging life situation caregiving husbands may experience, calling for personnel to learn from, care for, and collaborate with them, enabling the couple to live a meaningful life together at home as long as possible.

scholarly journals Typhoon eye effect versus ripple effect: the role of family size on mental health during the COVID-19 pandemic in Pakistan

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Tooba Lateef ◽  
Jiyao Chen ◽  
Muhammad Tahir ◽  
Teba Abdul Lateef ◽  
Bryan Z. Chen ◽  
...  
Keyword(s):  
Mental Health ◽  
Anxiety Disorders ◽  
Family Size ◽  
Health Care Providers ◽  
Vulnerable Groups ◽  
Ripple Effect ◽  
Health Issues ◽  
Care Providers ◽  
Populous Country

Abstract Background The recent outbreak of COVID-19 has impacted adversely upon the mental health of millions of people worldwide. Impacts on the mental health conditions and the associated predictors relating to adults in Pakistan, the fifth most populous country in the world, during the COVID-19 remain understudied. Our aim was to investigate distress, anxiety, and overall mental health and their associated predictors among Pakistani adults in this pandemic. We specifically examine mental health issues based on the distance from the epicenter, (a predictor that has revealed opposing evidence in other countries) based on the theories of typhoon eye effect and ripple effect. The sample consisted of 601 adults who were surveyed online about 2.5 months into the outbreak across Pakistan with varying distances from the epicenter of COVID-19 of Karachi. Results The results showed that 9.2 and 19.0% of the participants surpassed the cut-off criteria for distress and anxiety disorders, respectively. Overall, the distance from the epicenter positively predicted the mental health of adults in Pakistan, and family size negatively moderated this effect. The distance from the epicenter negatively predicted distress and anxiety disorders for adults in large families, which are quite common in Pakistan. Conclusion The evidence of the study interestingly finds that the prediction of the mental health of people by their distance from the epicenter depends on family size. The evidence of this study can help to provide initial indicators for mental health care providers to screen vulnerable groups in Pakistan, a populous country that continues struggling to cope with the COVID-19 pandemic.

scholarly journals Cultural and Institutional Issues in ACP for Care Home Residents: Perspectives of Loved Ones

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 754-754
Author(s):  
Brian de Vries ◽  
Gloria Gutman ◽  
Helen Kwan ◽  
Katrina Jang ◽  
Shimae Soheilipour ◽  
...  
Keyword(s):  
South Asian ◽  
Care Home ◽  
Decision Makers ◽  
Loved One ◽  
Targeted Interventions ◽  
Traditional Family ◽  
Institutional Issues ◽  
Bisexual And Transgender ◽  
Advance Care

Abstract Focus groups were held with family/decision makers of residents in an exclusively Chinese (EC; N=7) and a multi-ethnic (ME; N=8) care home, as well as South Asian (SA; n = 5) and lesbian, gay, bisexual and transgender caregivers (LGBT; n = 5) who had/have a loved one in a care home. Shared themes across groups included the role of the care home in Advance Care Planning (ACP) discussions, the timing of such discussions (i.e., at admission), and the extent to which another person was available and appropriate for such discussions. Issues unique to groups included superstition and the equation of ACP with funeral planning (EC), family history and regrets about not having planned (ME), gender differences and the need for education about ACP (SA) and the absence of traditional family among LGBT older adults. These themes highlight the challenges in ACP among diverse populations and the need for targeted interventions.

Sign in / Sign up

Export Citation Format

Share Document