Improving infectious TB education for foreign-born patients and family members

2021 ◽  
pp. 001789692110615
Author(s):  
Nancy Bedingfield ◽  
Bonnie Lashewicz ◽  
Dina Fisher ◽  
Kathryn King-Shier
Keyword(s):  
Family Member ◽  
Health Care Providers ◽  
Family Members ◽  
Large City ◽  
Well Being ◽  
Care Providers ◽  
Foreign Born ◽  
Structured Interviews ◽  
Negative Impacts ◽  
Many Sources

Objective: In low tuberculosis (TB) incidence countries, linguistic and cultural dissonance between families experiencing infectious TB and TB health care providers is a barrier to effective communication and successful treatment. The purpose of this research was to explore infectious TB education and counselling from the perspective of patients and family members who are foreign-born. Design/Setting: One component of a multiphase, qualitative case study conducted in Calgary, a large city in western Canada. Method: Data were collected through semi-structured interviews, chart review and field notes and analysed thematically. Eight families were represented in the 6 patient and 13 family member participants who had recently experienced infectious TB. Results: Three themes were generated from the data: ‘learning about TB from many sources’, ‘reassurance and connection’ and ‘missing information’. Participants described learning about TB in different ways, feeling reassured once they knew more and sharing information with others. Overall, participants expressed satisfaction with education and counselling received. However, there were indications that communication problems had occurred. Participants asked questions during the interview, described areas of lingering confusion and shared TB-related behaviours incongruent with medical understanding. Knowledge gaps often increased isolation. Conclusion: Gaps in infectious TB education and counselling have negative impacts on patient and family member well-being. Education and counselling can be improved using multiple modes of communication, proactively addressing common misperceptions and reducing barriers to patient participation. Improvements could empower families to better manage their own experience and share accurate TB information with their communities.

Emotional burden and distress among caregivers of cancer patients.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20722-e20722
Author(s):  
Harpreet Sidhu ◽  
Mir Asif Alikhan ◽  
Michael Glasser
Keyword(s):  
Health Care ◽  
Physical Health ◽  
Family Member ◽  
Health Care Providers ◽  
Cancer Diagnosis ◽  
Emotional Health ◽  
Family Members ◽  
Well Being ◽  
Health Providers ◽  
Care Providers

e20722 Background: Due to the nature of the disease, caregivers of patients with cancer encounter high levels of burden and distress. Very little research has examined the needs of cancer caregivers and ways to address these needs. Health providers might overlook the emotional aspects of a disease and diagnosis, being occupied and busy with other aspects of patient care. Methods: Questionnaires with a focus on personal physical health, emotional health, care received, and medical care in general were handed out to patients and family members. Health providers were given similar questionnaires. Results: There were 45 participants in total: 18 health providers, 10 patients, and 17 family members. Similarities or differences between the attitudes of family members, health providers, and patients were found. Providers more negatively assessed the effect of a patient’s cancer on the well-being of family members than did patients/family members. Family member physical health was more negatively rated [P < 0.001] by providers, as was family member emotional health [P< 0.001]. Providers were also more likely to check distresses on the NCCN distress thermometer than were patients/family members. Responses were similar between urban and rural participants. Conclusions: Family members did not feel that the cancer diagnosis had affected their overall well-being in an overtly negative way. Health care providers believed that the cancer diagnosis had more of a negative effect on family member well-being. Future studies should look at attitudes of doctors/physicians versus other health providers to family member well-being after a patient’s cancer diagnosis.

Acceptance of the HPV Vaccine in a Multiethnic Sample of Latinx Mothers

2021 ◽  
Vol 31 (3) ◽  
pp. 472-483
Author(s):  
Ana Cristina Lindsay ◽  
Madelyne J. Valdez ◽  
Denisse Delgado ◽  
Emily Restrepo ◽  
Yessica M. Guzmán ◽  
...  
Keyword(s):  
Health Care Providers ◽  
Thematic Analysis ◽  
Hpv Vaccine ◽  
Female Adolescents ◽  
Future Research ◽  
Care Providers ◽  
Foreign Born ◽  
Structured Interviews ◽  
Direct Benefits ◽  
Multiethnic Sample

This descriptive qualitative study explored Latinx mothers’ acceptance of the human papillomavirus (HPV) vaccine for their adolescent children. Data were collected through individual, semi-structured interviews and analyzed using a hybrid method of thematic analysis that incorporated deductive and inductive approaches. Twenty-two ( n = 22), mostly foreign-born, Latinx mothers of male and female adolescents participated in the study. Three main themes and nine subthemes emerged from the analyses. Findings identified the need for increased efforts to raise awareness and knowledge among Latinx mothers of the direct benefits of the HPV vaccine for sons, including stressing prevention of HPV-associated cancers in males. Findings also underscore the need for improved health care providers’ communication and recommendation of the HPV vaccine for Latinx adolescent males. Future research should intervene upon the study’s findings to address barriers that remain and affect Latinx mothers’ acceptance and uptake of the HPV vaccine for their children, in particular their sons.

The Importance of Religiosity to the Well-Being of African American Older Adults Living With Dementia

2018 ◽  
Vol 39 (5) ◽  
pp. 509-518 ◽  
Author(s):  
Fayron Epps ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Family Caregivers ◽  
Family Involvement ◽  
Health Care Providers ◽  
Well Being ◽  
Religious Practices ◽  
Care Providers ◽  
Religious Activities ◽  
Structured Interviews

This study was a post hoc analysis of a larger qualitative descriptive study exploring family involvement in health promotion activities for African Americans living with dementia where participants identified religious practices as meaningful health promotion activities. The purpose of this study was to explore ways in which religiosity may influence the well-being of older adults living with dementia. Semi-structured interviews were conducted among a sample of 22 family caregivers and 15 older adults living with dementia ( N = 37). Three themes emerged: Engagement, Promotion of Faith and Spiritual Connectedness, and Maintenance of Religious Practices. It is imperative for family caregivers to understand the important contributions of religious activities and beliefs to the well-being of their family member. This information might be of use for faith communities, policy makers, and health care providers in the provision of optimal person-centered care and the promotion of quality of life for persons living with dementia.

scholarly journals Patient and family engagement in incident investigations: exploring hospital manager and incident investigators’ experiences and challenges

2018 ◽  
Vol 23 (4) ◽  
pp. 252-261 ◽  
Author(s):  
Josje Kok ◽  
Ian Leistikow ◽  
Roland Bal
Keyword(s):  
Health Care Providers ◽  
Family Engagement ◽  
Family Members ◽  
Research Approach ◽  
Care Providers ◽  
Structured Interviews ◽  
Patient Centeredness ◽  
Incident Investigation ◽  
Professional Perspective ◽  
Study Participants

Objective There is growing recognition among health care providers and policy makers that when things go wrong, the patient or their families should be heard and participate in the incident investigation process. This paper explores how Dutch hospitals organize patient or family engagement in incident investigations, maps out incident investigators’ experiences of involving patients or their families in incident investigations and identifies the challenges encountered. Methods Semi-structured interviews were conducted with managers and incident investigators in 13 Dutch hospitals. Study participants (n = 18) were asked about the incident investigation routines and their experiences of involving affected patients or family members. Interview transcripts were coded and analysed using thematic content analysis. Results Our findings reveal that patient or family involvement in incident investigations is typically organized as a one-time interview event. Interviews with patients or their families were considered to be valuable and important in their own right and seen as a way to do justice to the individual needs of the patient or their family. Yet, the usefulness and validity of the patient or family perspective for incident investigations was often seen to be limited, with the professional perspective afforded more weight. This was particularly the case when the patient or their family were unable to provide verifiable details of the incident under investigation. Study participants described challenges when involving patients or family members, including in relation to the available timeframe for incident investigations, legal issues, managing trust and working with intense emotions. Conclusions We propose that by placing patient and family criteria of significance at the centre of incident investigations (i.e. an ‘emic’ research approach), hospitals may be able to expand their learning potential and improve patient-centeredness following an incident.

Building a patient-centered model: Palliative medicine and cancer care.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 75-75
Author(s):  
Kavitha Ramchandran ◽  
Derek Galligan ◽  
Erika L Tribett ◽  
Melissa Valentine ◽  
Meryl Selig ◽  
...  
Keyword(s):  
Best Practices ◽  
Health Care Providers ◽  
Cancer Care ◽  
Palliative Medicine ◽  
Large Scale ◽  
Best Practice ◽  
Family Members ◽  
Care Providers ◽  
Structured Interviews ◽  
Patient Centered

75 Background: Palliative medicine (PM) improves outcomes for cancer patients. Still, there is limited evidence around components of an efficient, patient-centered model for integrating PM into oncologic care. While PM is committed to aligning with a patient's goals of care, very few programs incorporate their input into design or evaluation. The aim of this project is to combine best practice in PM with perspectives of patients, families and providers to develop an empathic PM service. We hypothesize that collaboration with stakeholders and user experience experts will result in a feasible, impactful and translatable model of care that aligns with patient and family goals. Methods: We are conducting semi-structured interviews with 30 patients, family members and 30 oncologists. Patient interviews assess needs and coping mechanisms. Provider interviews assess perceptions and experiences around PM. We will conduct observations to understand how patients and providers interact and how current protocols are operationalized. Data will be coded and analyzed for major themes. An expert panel of patients, family members, health care providers and design experts will assimilate the data and make recommendations for the prototype care model design. The model will be piloted and evaluated in fall 2014. Outcome metrics include patient satisfaction, symptom management, utilization, mortality, and others identified during development. Data from the pilot will inform intervention improvements in preparation for a large-scale, 12- month pilot in an outpatient PM clinic. Results: Preliminary work includes the development of a novel patient and family interview protocol that integrates cutting-edge research on PM with best practices for conducting empathic interviews. We will present initial results from these interviews at the symposium, as well as our iterative design process. Conclusions: This project integrates data on patient and family experience with known best practices to develop a patient-centered model for palliative cancer care. The development process and potential outcomes hold significant promise for the design of patient and provider-centered care models, especially those related to chronic and serious illnesses.

scholarly journals Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

2019 ◽  
Vol 36 (10) ◽  
pp. 851-857 ◽  
Author(s):  
Klaudia Kukulka ◽  
Karla T. Washington ◽  
Raghav Govindarajan ◽  
David R. Mehr
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Quantitative Data ◽  
Well Being ◽  
Social Needs ◽  
Care Providers ◽  
Structured Interviews ◽  
Palliative Care Teams ◽  
The Impact

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Dementia ◽  
2020 ◽  
pp. 147130122097078
Author(s):  
Bruce D Walmsley ◽  
Lynne McCormack
Keyword(s):  
Home Care ◽  
Family Member ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Care Home ◽  
Family Members ◽  
Well Being ◽  
Aged Care ◽  
Structured Interviews ◽  
The Impact

Background and Objectives Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

scholarly journals Virtual Peer Support for People With Cystic Fibrosis and Their Family Members: A Program Evaluation

2020 ◽  
Vol 7 (6) ◽  
pp. 1748-1754
Author(s):  
Aimee Jeffrey ◽  
Lauren Andracchio ◽  
Meg Dvorak ◽  
Paula Lomas ◽  
Beth Smith ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Program Evaluation ◽  
Peer Support ◽  
Health Care Providers ◽  
Success Factors ◽  
Family Members ◽  
Well Being ◽  
Support Program ◽  
Care Providers ◽  
Peer Support Program

We sought to evaluate the feasibility, acceptability, and benefits of a virtual one-to-one peer support program for people with cystic fibrosis and their family members through a retrospective program evaluation. This peer support program was developed in collaboration with patients, health care providers, and CF Foundation program staff. Mentees were paired with a trained peer mentor for 3-month mentoring via video, phone, email, or text. We found that the peer support program was feasible and acceptable. Success factors include a range of positive benefits including practical support as well as social and emotional support. Two-thirds of mentees reported at least 4 different benefits. Mentors reported multiple benefits after providing support through mentoring. Our program evaluation demonstrates that virtual peer support based on informal sharing of life experiences is an achievable way to provide social support and enhance health and well-being in chronic disease management.

“It Changed Our Outlook on How We Want to Live”: Cancer as a Transformative Health Experience for Young Adult Survivors and Their Family Members

2018 ◽  
Vol 29 (3) ◽  
pp. 404-417
Author(s):  
Katharine J. Head ◽  
Nicholas T. Iannarino
Keyword(s):  
Young Adult ◽  
Health Care Providers ◽  
Family Members ◽  
Adult Survivors ◽  
Well Being ◽  
Primary Treatment ◽  
Care Providers ◽  
Open Communication ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors

Although young adult cancer survivors (YACSs) and their families face unique psychosocial and health-related challenges related to cancer, little is known about how the illness experience of cancer may positively transform their mental, physical, and social well-being following primary treatment. We conducted individual qualitative interviews with 30 YACSs and 21 of their family members. Participants described positive transformations as (a) perspective shifts on health and risk, (b) behavior changes toward more proactive healthy living, and (c) opportunities for more open communication about wellness. Few participants reported little to no transformation based on a fatalistic view of their diagnosis. Our findings illuminate important implications for health promotion and support in this population, including the role health care providers can play following primary treatment. We also discuss how YACSs can serve as important advocates for others and the need for more work exploring how and why positive illness transformations take place.

On the road again: Patient perspectives on commuting for palliative care

2010 ◽  
Vol 8 (2) ◽  
pp. 187-195 ◽  
Author(s):  
Barbara Pesut ◽  
Carole A. Robinson ◽  
Joan L. Bottorff ◽  
Gillian Fyles ◽  
Sandra Broughton
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Well Being ◽  
Cancer Center ◽  
Care Providers ◽  
Structured Interviews ◽  
On The Road

AbstractObjective:The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.Method:The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.Results:Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.Significance of Results:Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

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