scholarly journals Communicating Health Information at the End of Life: The Carers’ Perspective

2019 ◽  
Author(s):  
Olivia Ibañez-Masero ◽  
Inés María Carmona-Rega ◽  
María Dolores Ruiz-Fernández ◽  
Rocío Ortiz-Amo ◽  
José Cabrera-Troya ◽  
...  
Keyword(s):  
End Of Life ◽  
Health Information ◽  
Family Members ◽  
Death With Dignity ◽  
Four Dimensions ◽  
Nominal Groups ◽  
Information And Communication ◽  
Conspiracy Of Silence ◽  
Depth Interviews ◽  
Poor Management

Health information and communication are key elements that allow patients and family members to make decisions about  end-of-life process and guarantee a death with dignity. Objective: To understand carers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were carers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and 5 discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyse the discourses. Results: Four dimensions of the dying process emerged: differences in carers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life suffering and discomfort patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.

scholarly journals Communicating Health Information at the End of Life: The Caregivers’ Perspectives

2019 ◽  
Vol 16 (14) ◽  
pp. 2469 ◽  
Author(s):  
Olivia Ibañez-Masero ◽  
Inés María Carmona-Rega ◽  
María Dolores Ruiz-Fernández ◽  
Rocío Ortiz-Amo ◽  
José Cabrera-Troya ◽  
...  
Keyword(s):  
End Of Life ◽  
Health Information ◽  
Family Members ◽  
Death With Dignity ◽  
Four Dimensions ◽  
Nominal Groups ◽  
Information And Communication ◽  
Conspiracy Of Silence ◽  
Depth Interviews ◽  
Poor Management

Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity. Objective: To understand caregivers’ experiences regarding health information and communication during the illness and death of family members. Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications. Results: Four dimensions of the dying process emerged: differences in caregivers’ perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.

scholarly journals Understanding Experiences in Hospice: Exploring Temporal, Occupational, and Relational Dimensions Using Pictor Technique

2020 ◽  
Vol 30 (12) ◽  
pp. 1965-1977
Author(s):  
Laura Yvonne Bulk ◽  
Gil Kimel ◽  
Nigel King ◽  
Laura Nimmon
Keyword(s):  
Quality Of Life ◽  
Social Interaction ◽  
End Of Life ◽  
Iterative Process ◽  
Family Members ◽  
Occupational Engagement ◽  
Clock Time ◽  
Depth Interviews ◽  
Technique Analysis

Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants’ perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.

scholarly journals To share or not to share: an explorative study of health information non-sharing behaviour among Flemish adults aged fifty and over

2020 ◽  
Vol 25 (3) ◽  
Author(s):  
Martijn Huisman ◽  
◽  
Stijn Joye ◽  
Daniël Biltereyst ◽  
◽  
...  
Keyword(s):  
Health Information ◽  
Information Overload ◽  
Individual Responsibility ◽  
Information Avoidance ◽  
Information Behaviour ◽  
Social Settings ◽  
Information Studies ◽  
Contextual Framework ◽  
Information And Communication ◽  
Depth Interviews

Introduction. This study explores health information non-sharing behaviour in everyday social settings and interactions. The novelty and relevance of the study lies in the fact that it explores a common yet understudied information behaviour, as very few studies have examined information non-sharing. Method. Forty qualitative in-depth interviews were held in Flanders, the Dutch-speaking northern part of Belgium, with adults between the ages of fifty and eighty. Analysis. A contextual framework was drawn from information studies and health information and communication research, consisting of the concepts of health orientation, information avoidance, uncertainty management, to help understand health information non-sharing. Thematic analysis was employed to identify reasons for non-sharing behaviour. Results. Seven key themes or reasons emerge for health information non-sharing behaviour; health as a non-topic, avoid being labelled as ill, individual responsibility, avoid burdening others, lack of trust in others, lack of trust in the internet, and avoiding information overload. Conclusions. This study is not only more nuanced than earlier work on sharing behaviour, but also leads to new questions about outcomes of health information non-sharing. The findings further illuminate 'non-information behaviour' within information studies, while also offering insights relevant to health communication researchers and healthcare practitioners.

Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members

2020 ◽  
Vol 19 (7) ◽  
pp. 629-637 ◽  
Author(s):  
Anita E Molzahn ◽  
Laurene Sheilds ◽  
Anne Bruce ◽  
Kara Schick-Makaroff ◽  
Marcy Antonio ◽  
...  
Keyword(s):  
Heart Failure ◽  
Narrative Inquiry ◽  
End Of Life ◽  
Death And Dying ◽  
Healthcare Providers ◽  
Family Members ◽  
Advanced Heart Failure ◽  
Social Constructionist ◽  
Depth Interviews

Background Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members. Aims The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death. Methods and results A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but … ; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare. Conclusion The six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.

scholarly journals Care workers’ experiences discussing financial issues with families facing end-of-life decisions

2021 ◽  
Vol 4 (3) ◽  
Author(s):  
Paula Hopeck
Keyword(s):  
End Of Life ◽  
Family Members ◽  
Family Care ◽  
Data Set ◽  
Loved One ◽  
Financial Difficulties ◽  
Care Workers ◽  
Patient Advocates ◽  
Financial Issues ◽  
Depth Interviews

Numerous studies have confirmed the presence of financial difficulties for families when a loved one is at the end of life. However, few studies examine the discussions family members have with care workers about financial issues during end of life. The research presented here examines the experiences that care workers have with family members expressing financial concerns and how care workers respond. I conducted in-depth interviews with fifty-eight care workers, defined in this study as clergy, patient advocates, and nurses who had experiences talking with families about financial issues. Transcripts of the interviews served as the data set. I transcribed, coded and analyzed the data. Families talk about financial issues openly, although sometimes guiltily. Some families express difficulties implicitly, and in these cases, care workers often had to piece together information based on other statements and behaviors of the family. Care workers suggest solutions at the interpersonal, organizational, inter-organizational, social, and national levels. Findings also support prior research that it is important for families to have end-of-life discussions before death is imminent so that families may plan accordingly, and offer insights about care workers and their role in making financial discussions easier for families.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

Communicative practices in talking about death and dying in the context of Thai cancer care

2014 ◽  
Vol 10 (3) ◽  
pp. 263-271
Author(s):  
Pairote Wilainuch
Keyword(s):  
Conversation Analysis ◽  
District Hospital ◽  
Death And Dying ◽  
Family Members ◽  
Religious Support ◽  
Communicative Practices ◽  
Health Centres ◽  
Third Person ◽  
Thai People ◽  
Depth Interviews

This article explores communicative practices surrounding how nurses, patients and family members engage when talking about death and dying, based on study conducted in a province in northern Thailand. Data were collected from three environments: a district hospital (nine cases), district public health centres (four cases), and in patients’ homes (27 cases). Fourteen nurses, 40 patients and 24 family members gave written consent for participation. Direct observation and in-depth interviews were used for supplementary data collection, and 40 counselling sessions were recorded on video. The raw data were analysed using Conversation Analysis. The study found that Thai counselling is asymmetrical. Nurses initiated the topic of death by referring to the death of a third person – a dead patient – with the use of clues and via list-construction. As most Thai people are oriented to Buddhism, religious support is selected for discussing this sensitive topic, and nurses also use Buddhism and list-construction to help their clients confront uncertain futures. However, Buddhism is not brought into discussion on its own, but combined with other techniques such as the use of euphemisms or concern and care for others.

Quality Assessment of Health Information about Scaphoid Fracture in Chinese Websites (Preprint)

2019 ◽  
Author(s):  
Yaobin Yin ◽  
Jianguang Ji ◽  
Peng Lu ◽  
Wenyao Zhong ◽  
Liying Sun ◽  
...  
Keyword(s):  
Social Networks ◽  
Health Information ◽  
Search Engines ◽  
Medical Information ◽  
Scaphoid Fracture ◽  
Family Members ◽  
Online Information ◽  
Specific Content ◽  
The Mean

BACKGROUND With online health information becoming increasingly popular among patients and their family members, concerns have been raised about the accuracy from the websites. OBJECTIVE We aimed to evaluate the overall quality of the online information about scaphoid fracture obtained from Chinese websites using the local search engines. METHODS We conducted an online search using the keyword “scaphoid fracture” from the top 5 search engines in China, i.e. Baidu, Shenma, Haosou, Sougou and Bing, and gathered the top ranked websites, which included a total of 120 websites. Among them, 81 websites were kept for further analyses by removing duplicated and unrelated one as well as websites requiring payment. These websites were classified into four categories, including forum/social networks, commercials, academics and physician’s personals. Health information evaluation tool DISCERN and Scaphoid Fracture Specific Content Score (SFSCS) were used to assess the quality of the websites. RESULTS Among the 81 Chinese websites that we studied, commercial websites were the most common one accounting more than half of all websites. The mean DISCERN score of the 81 websites was 25.56 and no website had a score A (ranging from 64 to 80).The mean SFSCS score was 10.04 and no website had a score A (range between 24 and 30). In addition, DISCERN and SFSCS scores from academic and physician’s websites were significantly higher than those from the forum/social networks and commercials. CONCLUSIONS The overall quality of health information obtained from Chinese websites about scaphoid fracture was very low, suggesting that patients and their family members should be aware such deficiency and pay special attentions for the medical information obtained by using the current search engines in China.

Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

2020 ◽  
Author(s):  
Christina Cassady ◽  
William Ben Mortenson ◽  
Andrea F Townson ◽  
Shannon Sproule ◽  
Janice Jennifer Eng
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Health Information ◽  
Information Needs ◽  
Information Source ◽  
Family Members ◽  
Hospital Setting ◽  
Community Setting ◽  
Therapeutic Education ◽  
Cord Injury

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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