Communication and Information Needs of Care-Givers of Adult Family Members at Diagnosis and during Treatment of Terminal Cancer

2000 ◽  
Vol 8 (6) ◽  
pp. 345-350 ◽  
Author(s):  
C Grbich ◽  
D Parker ◽  
I Maddocks
Keyword(s):  
Information Needs ◽  
Family Members ◽  
Terminal Cancer ◽  
Care Givers

scholarly journals Communication Needs of Family Members with a Relative in Intensive Care Unit

2017 ◽  
Vol 2 (4) ◽  
pp. 19 ◽  
Author(s):  
Rosnani Hussin ◽  
Faridah Hashim
Keyword(s):  
Communication Skills ◽  
Information Needs ◽  
Publishing House ◽  
Family Members ◽  
Family Needs ◽  
Good Communication ◽  
Care Givers ◽  
International Publishing ◽  
Communication Needs ◽  
Open Access Article

The communication needs of family members with a relative in the ICU,  needs of family members; prioritise those needs and who met those needs.  with earlier studies where family members placed hope and trusts on the health care givers as top priority. An important outcome of this study is the importance of good communication skills for nurses to relay information needs of family members with a critically ill person in the ICU. Keywords: family needs, information needs, communication. eISSN 2514-7528 © 2017 The Authors. Published for AMER ABRA by e-International Publishing House, Ltd., UK. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer–review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians) and cE-Bs (Centre for Environment-Behaviour Studies), Faculty of Architecture, Planning & Surveying, Universiti Teknologi MARA, Malaysia.

Information Practices of Baby Boomers as Caregivers

2013 ◽  
Author(s):  
Khuan Seow ◽  
Nadia Caidi
Keyword(s):  
Social Policy ◽  
Baby Boomers ◽  
Information Needs ◽  
Family Members ◽  
Age Groups ◽  
Maladie D’Alzheimer ◽  
Policy Makers ◽  
Age Related ◽  
The Family ◽  
Growing Age

Canada has an aging population with the fastest growing age groups (80 and 45-64 years old) vulnerable to age-related diseases such as Alzheimer’s disease. Caregiving responsibilities often fall to the family members of the afflicted without much attention and consideration being placed on the information needs of these caregivers. We call for a better understanding of these caregivers' information needs and uses by social policy makers as well as information providers.La population du Canada a tendance à vieillir considérablement, avec la hausse la plus rapide dans les groupes d’âge (80 et 45 à 64 ans). Les personnes âges sont très vulnérables à toute sorte de maladies, telles que la maladie d’Alzheimer. La responsabilité revient souvent aux membres de la famille qui doivent prendre soin des personnes atteintes de cette maladie. Or, nous ne connaissons que peu de chose sur les besoins en information des personnes qui prennent soin de ces malades de l’Alzheimer : qui sont-ils ? Quelles sont leurs sources... 

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.

Alzheimer-Erkrankungen, Autonomie und zwei Paradigmen der Pflegeethik

2018 ◽  
Vol 66 (1) ◽  
pp. 75-86
Author(s):  
Klaus-Peter Rippe
Keyword(s):  
Thought Experiment ◽  
Family Members ◽  
Best Interests ◽  
Capacity To Consent ◽  
Care Givers ◽  
Professional Care

Abstract Family members and professional care-givers are often confronted with challenging and self-destructive behaviours of people suffering from dementia, and it is not clear at all if these situations should be regulated by principles of autonomy or by principles of care, which consider the best interests of the patients. With reference to a thought experiment, this paper argues that it is not possible to control these situations by implementing principles of autonomy. Instead, while taking into account the patients’ capacity to consent, it is better to apply principles of care in challenging situations.

scholarly journals Informing Clients through Information Communication Technology in Health Care Systems

10.28945/3367 ◽  
2009 ◽  
Author(s):  
Vangari Vishwa Mohan ◽  
Vahideh Zarea Gavgani
Keyword(s):  
Communication Technology ◽  
Science Communication ◽  
Information Needs ◽  
Medical Information ◽  
Information Communication Technology ◽  
Structured Interview ◽  
Sources Of Information ◽  
Information Communication ◽  
Critical Information ◽  
Care Givers

Information Communication Technology (ICT) has revolutionized the world communication order. People can be informed in more effective, efficient and convenient ways. Access to media has percolated to the grassroots. In spite of all such remarkable developments, whether ICT facilitates Science communication is a billion dollar question. Though information is freely and widely available by virtue of ICT, yet, there are areas where Science communication through ICT still needs to be developed to deliver critical information to the needy. Objectives: The objectives of the study are to find out: whether patients and care givers have perception of their information needs? What sources of information they usually consult? What type of channels/media they possess to access the information? What sources the patients and care givers prefer to consult? Whether in the opinion of the patients and their care givers, the ICTs are effective in delivering the critical information. Methodology: An exploratory survey was conducted. A semi-structured interview was employed to collect data from a group of 188 patients and care givers in the hospitals and clinics in Hyderabad (India). Results and conclusion: The study determined the patients’ and care givers’ preferences for technologies in keeping informed. It also brought to light the limitations and usefulness of ICTs in Science communication in general and medical information in particular.

scholarly journals A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer's disease and related dementias in southwestern Uganda

2021 ◽  
pp. 1-14
Author(s):  
Catherine Abaasa ◽  
Celestino Obua ◽  
Edith K. Wakida ◽  
Godfrey Zari Rukundo
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Medical Care ◽  
Family Members ◽  
Medical Care System ◽  
Psychosocial Services ◽  
Care Givers ◽  
Care Giving ◽  
Southwestern Uganda ◽  
Care System

Abstract Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilised and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community.

scholarly journals Why Early Diagnosis Is Better for Alzheimer’s Patients

2009 ◽  
Vol 4 (1) ◽  
pp. 10
Author(s):  
Thierry Voisin ◽  
Sandrine Sourdet ◽  
Julien Delrieu ◽  
Bruno Vellas ◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Practitioner ◽  
Cognitive Function ◽  
Early Diagnosis ◽  
Family Members ◽  
Special Role ◽  
Significant Deterioration ◽  
Common Cause ◽  
Care Givers

Alzheimer’s disease (AD) is the most common cause of dementia. AD progression leads to a significant deterioration in cognitive function, resulting in a significant impact not only on patient quality of life but also on the quality of life of family members/care-givers. Some physicians do not feel that diagnosing AD is necessary due to the absence of any cure and the stress related to diagnosis. Nevertheless, it is important to diagnose AD as early as possible. Early diagnosis of AD allows the patient to be more involved in treatment planning, since at this stage the patient’s cognitive function will be near normal. Many forms of the disease do not progress rapidly, and early diagnosis and treatment will allow a good quality of life for the patient, family members and care-givers. The general practitioner has a special role in detecting and following up patients diagnosed with AD.

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