Understanding Hospice Patients’ Beliefs About Their Life Expectancy: A Qualitative Interview Study

2020 ◽  
pp. 104990912094848
Author(s):  
Jennifer M. Taber ◽  
Clare L. Stacey ◽  
Denice K. Sheehan
Keyword(s):  
Life Expectancy ◽  
Advanced Disease ◽  
Well Being ◽  
Physical Symptoms ◽  
Future Research ◽  
Common Source ◽  
Structured Interviews ◽  
Qualitative Interview Study ◽  
Hospice Patients ◽  
Length Of Life

Background: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making. Objective: To examine the nature and source of hospice patients’ life expectancy estimates, about which little is known. Design: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response. Setting/Subjects: Participants were hospice patients ( n = 20, 55% male; 60% cancer). Measurement: We conducted thematic analysis using open and focused coding. Results: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients’ prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider’s estimate. Some patients said providers do not know prognosis or that time of death was unknowable. Conclusions: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients’ life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

Achieving Financial Inclusion for Persons With Disabilities: Exploring Preparedness and Accessibility of Financial Services for Persons With Disabilities in Malawi

2021 ◽  
pp. 104420732110275
Author(s):  
Alex Nester Jiya ◽  
Maxwell Peprah Opoku ◽  
William Nketsia ◽  
Joslin Alexei Dogbe ◽  
Josephine Nkrumah Adusei
Keyword(s):  
Financial Literacy ◽  
Financial Services ◽  
Commercial Banks ◽  
Empirical Studies ◽  
Well Being ◽  
Living Conditions ◽  
Inclusive Development ◽  
Future Research ◽  
Structured Interviews ◽  
Persons With Disabilities

Deplorable living conditions among persons with disabilities and the need to improve their living conditions cannot be overemphasized. This has triggered international discussion on the need for deliberate social policies to bridge the poverty gap between persons with and without disabilities. In Malawi, expansion of financial services has been identified as an essential tool to accelerate economic and inclusive development. However, empirical studies are yet to explore the preparedness of financial institutions to extend their services to persons with disabilities. In this qualitative study, semi-structured interviews were conducted with managers from commercial banks in Malawi to understand their perspectives on extending financial services to persons with disabilities. Interviews were transcribed verbatim and a descriptive thematic analysis was performed. Although participants reiterated the need to provide persons with disabilities with financial services to improve their well-being, few initiatives have been undertaken to improve their participation. Particularly, participants stated that barriers, such as a lack of financial literacy and adaptive technologies, communication barriers, and high rates of unemployment, explained the reluctance of commercial banks to extend financial services to persons with disabilities. The limitations, recommendations for future research, and implications of the study for policymaking have been highlighted.

Library services enriching community engagement for dementia care: The Tales & Travels Program at a Canadian Public Library as a case study

2021 ◽  
pp. 096100062110651
Author(s):  
Jiamin Dai ◽  
Joan C. Bartlett ◽  
Karyn Moffatt
Keyword(s):  
Public Libraries ◽  
Public Library ◽  
Well Being ◽  
Dementia Care ◽  
Future Research ◽  
Library Services ◽  
Structured Interviews ◽  
Community Based ◽  
People With Dementia

Growing dementia-friendly library services are contributing to community-based dementia care. Emerging community programs in libraries and museums provide notable opportunities for promoting engagement and inclusivity, but these programs have yet to receive in-depth assessments and analyses to guide future research and practice. This paper presents a case study examining a social and storytelling program for people with dementia run by a Canadian public library. It investigates two research questions: How can public library programs contribute to community-based dementia care? And what are public libraries’ strengths and challenges in running programs for people with dementia? The study involves participant observations of the program and semi-structured interviews with people with dementia, caregivers, and program facilitators (librarians and Alzheimer Society coordinators). Through thematic analysis of fieldnotes and transcripts, the study reveals how this inclusive platform supports engagement, fosters relationships, helps caregivers, and reaches broader communities. This research further uncovers the librarians’ diversified roles as demonstrated through their collaboration with professionals, preparation and research, and facilitation of the sessions. This paper advances librarianship research on enriching community-based dementia care, including furthering inclusivity and engagement and extending accessible library services. By analyzing library programming for the dementia community and assessing its strengths and challenges, the paper highlights librarians’ awareness of the community’s evolving needs and their collaboration with other professionals. It offers practical insights on useful resources and emerging best practices that will hopefully inspire other initiatives in which information professionals can help improve the well-being of vulnerable populations.

scholarly journals A qualitative study of the shared experience of humour between people living with dementia and their partners

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1794-1810
Author(s):  
Helen Hickman ◽  
Chris Clarke ◽  
Emma Wolverson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Emotional Experience ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Relationship Strength ◽  
Social And Emotional ◽  
People With Dementia ◽  
Care Partners ◽  
Person With Dementia

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: ‘Humour Has Always Been There (and Always Will Be)’; ‘Withstanding Dementia’ and ‘Renewing the Value of Humour in Dementia’. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.

scholarly journals Understanding the lived experience of British non-offending paedophiles

2020 ◽  
Vol 22 (2) ◽  
pp. 71-81
Author(s):  
Harriet Dymond ◽  
Simon Duff
Keyword(s):  
Sexual Abuse ◽  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Sexual Attraction ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Content Type ◽  
Management Techniques ◽  
The Uk

Purpose Research into paedophilia mainly uses offender samples; thus, little is understood about non-offending paedophiles. The limited body of research has been conducted in North America or Europe whose health and legal systems differ from those in the UK. Using semi-structured interviews, the purpose of this study is to explore the experience of three non-offending British paedophilic males. Design/methodology/approach The interview discussed their paedophilia, refraining from offending and perspectives on treatment initiatives. Data were analysed using interpretative phenomenological analysis. Findings Three superordinate themes emerged: “paedophilia as more than a sexuality,” “acceptance leads to management” and “barriers to support.” These encapsulated how paedophilia was understood, how accepting one’s sexual attraction is tantamount to well-being and the various obstacles to providing support were discussed. Research limitations/implications Acknowledging the sampling considerations (size and recruitment), the results implicate research into paedophilia. The onset of paedophilia was chronologically associated with typical sexual attraction, and not the result of sexual abuse as some theories suggest. Furthermore, the tenets of attraction to children extending beyond sexual desire were highlighted. Practically, the results influence future research into the area and highlight the dearth in our understanding of diverse behavioural management techniques (i.e. computerised images of children or human-like dolls). Originality/value This paper presents novel insight into the aspects of paedophilia, excluding offensive behaviour and highlights the need for affordable, UK-based services targeted towards people with a paedophilic attraction to manage child sexual abuse preventatively and not reactively.

scholarly journals A Study on Visual Representations for Active Plant Wall Data Analysis

Data ◽  
2019 ◽  
Vol 4 (2) ◽  
pp. 74 ◽  
Author(s):  
Kahin Akram Hassan ◽  
Yu Liu ◽  
Lonni Besançon ◽  
Jimmy Johansson ◽  
Niklas Rönnberg
Keyword(s):  
User Study ◽  
Line Graph ◽  
Well Being ◽  
Future Research ◽  
Temporal Data ◽  
Indoor Climate ◽  
Structured Interviews ◽  
Future Directions ◽  
Domain Experts ◽  
The Status

The indoor climate is closely related to human health, well-being, and comfort. Thus, an understanding of the indoor climate is vital. One way to improve the indoor climates is to place an aesthetically pleasing active plant wall in the environment. By collecting data using sensors placed in and around the plant wall both the indoor climate and the status of the plant wall can be monitored and analyzed. This manuscript presents a user study with domain experts in this field with a focus on the representation of such data. The experts explored this data with a Line graph, a Horizon graph, and a Stacked area graph to better understand the status of the active plant wall and the indoor climate. Qualitative measures were collected with Think-aloud protocol and semi-structured interviews. The study resulted in four categories of analysis tasks: Overview, Detail, Perception, and Complexity. The Line graph was found to be preferred for use in providing an overview, and the Horizon graph for detailed analysis, revealing patterns and showing discernible trends, while the Stacked area graph was generally not preferred. Based on these findings, directions for future research are discussed and formulated. The results and future directions of this research can facilitate the analysis of multivariate temporal data, both for domain users and visualization researchers.

scholarly journals Patients’ Needs Regarding Anxiety Management in Palliative Cancer Care: A Qualitative Study in a Hospice Setting

2019 ◽  
Vol 36 (11) ◽  
pp. 947-954 ◽  
Author(s):  
Danielle Zweers ◽  
Alexander de Graeff ◽  
Jette Duijn ◽  
Everlien de Graaf ◽  
Petronella O. Witteveen ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Symptom Management ◽  
World Health ◽  
Future Research ◽  
Common Symptom ◽  
Structured Interviews ◽  
Open Communication ◽  
Hospice Patients ◽  
Health Organization

Introduction: Anxiety is a common symptom in the palliative phase, and symptom management depends on the competencies of individual professionals. This study aims to get insight into the needs of anxious hospice patients with advanced cancer regarding support. Method: Semi-structured interviews were performed in admitted hospice patients with cancer. Patients admitted from May 2017 till May 2018 were eligible whether or not they were anxious. Interviews were analyzed and coded within predefined topics. Results: Fourteen patients were included: 10 females, median age 71, and median World Health Organization performance score 3. Most patients were highly educated. Thirteen patients were interviewed within 6 months before death. Information, open communication, sense of control, safety, adequate symptom management, and respect for patients’ coping strategy were the 6 main expressed needs. Conclusion: Assessing patients’ needs regarding anxiety provided important angles where health-care professionals can make a difference in order to support anxious patients in their final stage of life to realize tailored palliative care. Future research should focus on the development of a systematic approach for health-care professionals to manage anxiety in daily care of terminal patients.

Psychological, physical, and interpersonal correlates of emotional expressiveness, conflict, and control

1991 ◽  
Vol 5 (2) ◽  
pp. 131-150 ◽  
Author(s):  
Laura A. King ◽  
Robert A. Emmons
Keyword(s):  
Psychological Distress ◽  
Emotional Expression ◽  
Married Couples ◽  
Well Being ◽  
Physical Symptoms ◽  
Emotional Expressiveness ◽  
Future Research ◽  
Emotional Control ◽  
Over Expression ◽  
Ambivalence Over Emotional Expression

This article examines the relations between emotional expression, conflict over expression, and emotional control and psychological and physical distress. Fifty married couples completed two mail‐in surveys containing the Emotional Expressiveness Questionnaire (EEQ), the Ambivalence Over Emotional Expression Questionnaire (AEQ), and the Emotional Control Questionnaire (ECQ), as well as measures of psychological and physical well‐being. They also made expressiveness and well‐being ratings of their spouses. AEQ and ECQ scores were significantly positively correlated with measures of psychological distress and questionnaire measures of physical discomfort. In addition, AEQ scores for items dealing explicitly with anger predicted visits to health‐care provider for illness. EEQ scores did not predict either psychological distress or physical symptoms. AEQ scores were also positively correlated with spouse's symptoms and alcohol use. Wives' expressiveness ratings for their husbands were negatively correlated with a number of indices of psychological distress, while husbands' ratings of wives' expressiveness were positively correlated with measures of distress. Generally, expressiveness, inhibition, and conflict over expression in one spouse did not consistently predict well‐being of the other. Implications of these findings for future research in the area of emotion and illness as well as in relationship satisfaction are discussed.

scholarly journals Skills for transition: the perspectives of women seeking asylum in Ireland

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Dermot O’Callaghan ◽  
Emma O’Riordan ◽  
Yvonne Pennisi
Keyword(s):  
Qualitative Methodology ◽  
Health Management ◽  
Community Based Participatory Research ◽  
Population Group ◽  
Well Being ◽  
Transitional Period ◽  
Future Research ◽  
Structured Interviews ◽  
Content Type ◽  
Past Experiences

Purpose Current domestic and international research predominantly examines the past experiences of people seeking asylum and the negative influences such experiences have on health and well-being. However, few studies address the future needs of people seeking asylum, as they transition from Direct Provision. This study aims to address this gap in knowledge by exploring the perspectives of women seeking asylum in Ireland on the skills they think they will need, as they transition from Direct Provision to life in Ireland. Design/methodology/approach A qualitative methodology using a community-based participatory research (CBPR) approach was used, to collect data collaboratively and sensitively with a vulnerable population group. Convenience sampling was used to recruit six women seeking asylum in Ireland, to participate in focus groups and semi-structured interviews. Data were transcribed and analysed using thematic analysis. Findings Women seeking asylum identified four themes of skills for doing, skills for being, skills for becoming and skills for belonging that are necessary for life in Ireland after Direct Provision. Barriers and opportunities to develop these skills were documented as sub-themes. The skills identified under these themes and sub-themes included work, education, driving, childcare, social integration, money management, home management, health management and leisure. Originality/value Using participatory methodologies, future research should further explore the skills required for transition from Direct Provision, to continue to raise awareness of the potential for occupational injustice and the role occupational therapists could play in this transitional period.

scholarly journals Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison
Keyword(s):  
Emotional Distress ◽  
Well Being ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Psychological Interventions ◽  
Structured Interviews ◽  
Face To Face ◽  
Qualitative Interview Study ◽  
The Uk ◽  
Broad Understanding

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.

scholarly journals Applying Intervention Mapping to Improve the Applicability of Precious Memories, an Intervention for Depressive Symptoms in Nursing Home Residents

2019 ◽  
Vol 16 (24) ◽  
pp. 5163
Author(s):  
Iris van Venrooij ◽  
Jan Spijker ◽  
Gerben J. Westerhof ◽  
Ruslan Leontjevas ◽  
Debby L. Gerritsen
Keyword(s):  
Intervention Mapping ◽  
Nursing Home Residents ◽  
Well Being ◽  
Life Review ◽  
Drop Out ◽  
Future Research ◽  
Structured Interviews ◽  
Behavior Change Techniques ◽  
Drop Out Rate ◽  
Selection Of

Precious memories (PM) is a life review intervention for depression in older adults with no to mild cognitive decline that has been implemented in multiple nursing homes (NHs) in the Netherlands. Previous research suggested its relevance but questioned its applicability. Therefore, this research aimed to (1) investigate the applicability of PM, and (2) increase its applicability, if necessary. Intervention mapping (IM) was used to achieve these goals: process evaluation through semi-structured interviews with psychologists (n = 11) and clients (n = 2) to identify potential improvements for PM and to set an improvement goal (IM-step 1); three focus groups with stakeholders (n = 20) to specify behaviors necessary to reach the improvement goal (IM-step 2); and selection of behavior change techniques and applications to facilitate attainment of these behaviors (IM-step 3). Results showed that psychologists perceived a high drop-out rate, which was partly due to PM being provided to clients that did not belong to the target group. Although PM was generally considered relevant, psychologists articulated its longer-term effects should be improved. To improve PM’s applicability, concrete maintenance strategies were developed aiming to maintain clients’ well-being by stimulating positive contact with others. Future research must pilot, implement and evaluate these strategies.

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