Development and evaluation of an intervention to support family caregivers of people with cancer to provide home based care at the end of life a feasibility study
This study aimed to develop and evaluate an intervention to support family caregivers of cancer patients providing home-based end-of-life care. In Phase 1, interviews with 29 caregivers identified their needs for practical information and support skills. Based on these findings, the researchers created an informational booklet as the preferred format. In Phase 2, 31 caregivers and 14 nurses evaluated the booklet. Caregivers reported feeling more positive, reassured, and competent in their caregiving role after using the booklet. Nurses found the booklet useful and received fewer calls from caregivers who used it. However, caregivers indicated they would have benefited from receiving the booklet earlier in the care trajectory. The researchers concluded the
Impact of Intervention Program on Quality of End of Life Care Provided by Ped...iosrjce
IOSR Journal of Nursing and health Science is ambitious to disseminate information and experience in education, practice and investigation between medicine, nursing and all the sciences involved in health care. Nursing & Health Sciences focuses on the international exchange of knowledge in nursing and health sciences. The journal publishes peer-reviewed papers on original research, education and clinical practice.
By encouraging scholars from around the world to share their knowledge and expertise, the journal aims to provide the reader with a deeper understanding of the lived experience of nursing and health sciences and the opportunity to enrich their own area of practice. The journal publishes original papers, reviews, special and general articles, case management etc.
Impact of Intervention Program on Quality of End of Life Care Provided by Ped...iosrjce
IOSR Journal of Nursing and health Science is ambitious to disseminate information and experience in education, practice and investigation between medicine, nursing and all the sciences involved in health care. Nursing & Health Sciences focuses on the international exchange of knowledge in nursing and health sciences. The journal publishes peer-reviewed papers on original research, education and clinical practice.
By encouraging scholars from around the world to share their knowledge and expertise, the journal aims to provide the reader with a deeper understanding of the lived experience of nursing and health sciences and the opportunity to enrich their own area of practice. The journal publishes original papers, reviews, special and general articles, case management etc.
Stigma and Family reaction among Caregivers of Persons Living with Cancerinventionjournals
Cancer stigma refers to a negative or undesirable perception of a person affected by cancer. Stigma can be internal—it can affect self-perception of survivors, causing guilt, blame or shame. It can also be enacted, causing discrimination, loss of employment or income, or social isolation. It can come from misinformation, lack of awareness and deeply-engrained myth.The present study consisted of 300 caregivers of persons with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria. Those patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services of cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. The data was collected from the patients & caregivers of persons living with cancer who fulfill the inclusion/exclusion criteria were taken up for the study after their consent. Semi structured interview schedule were used to understand the stigma and family reaction. The interviews and the instruments were administered by research experts.
The keynote address was delivered at the NYSAVSA Annual Conference on June 7, 2012 in Geneva, NY. The purpose of the address was 3-fold: (1) Outline what patient- and family-centered care is, its core components, and benefits; (2)Highlight some best practice volunteer programs aligned with the PFCC philosophy; (3) Provide conference participants with an assessment grid to evaluate their volunteer programming based on two PFCC standards and walk away from the presentation with concrete strategic next steps to enhance and strengthen their volunteer programming based on the PFCC model and philosophy.
Advanced practice nursing; an expanded nursing role on an international level Hanze University Groningen
Eduprof Expertmeeting 14-15 April 2011 Groningen.
Workshop Nursing
presentation on Advanced practice nursing; an expanded nursing role on an international level by Mrs. P. Roodbol, Hanze University of Applied Sciences Groningen. The Netherlands
Stigma and Family reaction among Caregivers of Persons Living with Cancerinventionjournals
Cancer stigma refers to a negative or undesirable perception of a person affected by cancer. Stigma can be internal—it can affect self-perception of survivors, causing guilt, blame or shame. It can also be enacted, causing discrimination, loss of employment or income, or social isolation. It can come from misinformation, lack of awareness and deeply-engrained myth.The present study consisted of 300 caregivers of persons with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria. Those patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services of cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. The data was collected from the patients & caregivers of persons living with cancer who fulfill the inclusion/exclusion criteria were taken up for the study after their consent. Semi structured interview schedule were used to understand the stigma and family reaction. The interviews and the instruments were administered by research experts.
The keynote address was delivered at the NYSAVSA Annual Conference on June 7, 2012 in Geneva, NY. The purpose of the address was 3-fold: (1) Outline what patient- and family-centered care is, its core components, and benefits; (2)Highlight some best practice volunteer programs aligned with the PFCC philosophy; (3) Provide conference participants with an assessment grid to evaluate their volunteer programming based on two PFCC standards and walk away from the presentation with concrete strategic next steps to enhance and strengthen their volunteer programming based on the PFCC model and philosophy.
Advanced practice nursing; an expanded nursing role on an international level Hanze University Groningen
Eduprof Expertmeeting 14-15 April 2011 Groningen.
Workshop Nursing
presentation on Advanced practice nursing; an expanded nursing role on an international level by Mrs. P. Roodbol, Hanze University of Applied Sciences Groningen. The Netherlands
Similar to Development and evaluation of an intervention to support family caregivers of people with cancer to provide home based care at the end of life a feasibility study
November-December 2013 • Vol. 22/No. 6 359
Beverly Waller Dabney, PhD, RN, is Associate Professor, Southwestern Adventist University,
Keene, TX.
Huey-Ming Tzeng, PhD, RN, FAAN, is Professor of Nursing and Associate Dean for Academic
Programs, College of Nursing, Washington State University, Spokane, WA.
Service Quality and Patient-Centered
Care
L
eaders of the U.S. Depart -
ment of Health & Human
Services (2011) urge providers
to improve the overall quality of
health care by making it more
patient centered. Patient-centered
care (or person-centered care) refers
to the therapeutic relationship
between health care providers and
recipients of health care services,
with emphasis on meeting the
needs of individual patients. Al -
though the term has been used
widely in recent years, it remains a
poorly defined and conceptualized
phenomenon (Hobbs, 2009).
Patient-centered care is believed
to be holistic nursing care. It pro-
vides a mechanism for nurses to
engage patients as active partici-
pants in every aspect of their health
(Scott, 2010). Patient shadowing
and care flow mapping were used to
create a sense of empathy and
urgency among clinicians by clarify-
ing the patient and family experi-
ence. These two approaches, which
were meant to promote patient-cen-
tered care, can improve patient sat-
isfaction scores without increasing
costs (DiGioia, Lorenz, Greenhouse,
Bertoty, & Rocks, 2010). A better
under standing of attributes of
patient-centered care and areas for
improvement is needed in order to
develop nursing policies that in -
crease the use of this model in health
care settings.
The purpose of this discussion is
to clarify the concept of patient-cen-
tered care for consistency with the
common understanding about pa -
tient satisfaction and the quality of
care delivered from nurses to
patients. Attributes from a customer
service model, the Gap Model of
Service Quality, are used in a focus
on the perspective of the patient as
the driver and evaluator of service
quality. Relevant literature and the
Gap Model of Service Quality
(Parasuraman, Zeithaml, & Leonard,
1985) are reviewed. Four gaps in
patient-centered care are identified,
with discussion of nursing implica-
tions.
Background and Brief
Literature Review
Patient-Centered Care
The Institute of Medicine (IOM,
2001a) and Epstein and Street (2011)
identified patient-centeredness as
one of the areas for improvement in
health care quality. The IOM (2001b)
defined patient-centeredness as
…health care that establishes a
partnership among practition-
ers, patients, and their families
(when appropriate) to ensure
that decisions respect patients’
wants, needs, and preferences
and that patients have the edu-
cation and support they require
to make decisions and partici-
pate in their own care… (p. 7)
Charmel and Frampton (2008)
defined patient-centered care as
…a healthcare setting in which
patients are encouraged to be
actively involved in their care,
with a physical environment
t.
November-December 2013 • Vol. 22/No. 6 359
Beverly Waller Dabney, PhD, RN, is Associate Professor, Southwestern Adventist University,
Keene, TX.
Huey-Ming Tzeng, PhD, RN, FAAN, is Professor of Nursing and Associate Dean for Academic
Programs, College of Nursing, Washington State University, Spokane, WA.
Service Quality and Patient-Centered
Care
L
eaders of the U.S. Depart -
ment of Health & Human
Services (2011) urge providers
to improve the overall quality of
health care by making it more
patient centered. Patient-centered
care (or person-centered care) refers
to the therapeutic relationship
between health care providers and
recipients of health care services,
with emphasis on meeting the
needs of individual patients. Al -
though the term has been used
widely in recent years, it remains a
poorly defined and conceptualized
phenomenon (Hobbs, 2009).
Patient-centered care is believed
to be holistic nursing care. It pro-
vides a mechanism for nurses to
engage patients as active partici-
pants in every aspect of their health
(Scott, 2010). Patient shadowing
and care flow mapping were used to
create a sense of empathy and
urgency among clinicians by clarify-
ing the patient and family experi-
ence. These two approaches, which
were meant to promote patient-cen-
tered care, can improve patient sat-
isfaction scores without increasing
costs (DiGioia, Lorenz, Greenhouse,
Bertoty, & Rocks, 2010). A better
under standing of attributes of
patient-centered care and areas for
improvement is needed in order to
develop nursing policies that in -
crease the use of this model in health
care settings.
The purpose of this discussion is
to clarify the concept of patient-cen-
tered care for consistency with the
common understanding about pa -
tient satisfaction and the quality of
care delivered from nurses to
patients. Attributes from a customer
service model, the Gap Model of
Service Quality, are used in a focus
on the perspective of the patient as
the driver and evaluator of service
quality. Relevant literature and the
Gap Model of Service Quality
(Parasuraman, Zeithaml, & Leonard,
1985) are reviewed. Four gaps in
patient-centered care are identified,
with discussion of nursing implica-
tions.
Background and Brief
Literature Review
Patient-Centered Care
The Institute of Medicine (IOM,
2001a) and Epstein and Street (2011)
identified patient-centeredness as
one of the areas for improvement in
health care quality. The IOM (2001b)
defined patient-centeredness as
…health care that establishes a
partnership among practition-
ers, patients, and their families
(when appropriate) to ensure
that decisions respect patients’
wants, needs, and preferences
and that patients have the edu-
cation and support they require
to make decisions and partici-
pate in their own care… (p. 7)
Charmel and Frampton (2008)
defined patient-centered care as
…a healthcare setting in which
patients are encouraged to be
actively involved in their care,
with a physical environment
t.
November-December 2013 • Vol. 22/No. 6 359
Beverly Waller Dabney, PhD, RN, is Associate Professor, Southwestern Adventist University,
Keene, TX.
Huey-Ming Tzeng, PhD, RN, FAAN, is Professor of Nursing and Associate Dean for Academic
Programs, College of Nursing, Washington State University, Spokane, WA.
Service Quality and Patient-Centered
Care
L
eaders of the U.S. Depart -
ment of Health & Human
Services (2011) urge providers
to improve the overall quality of
health care by making it more
patient centered. Patient-centered
care (or person-centered care) refers
to the therapeutic relationship
between health care providers and
recipients of health care services,
with emphasis on meeting the
needs of individual patients. Al -
though the term has been used
widely in recent years, it remains a
poorly defined and conceptualized
phenomenon (Hobbs, 2009).
Patient-centered care is believed
to be holistic nursing care. It pro-
vides a mechanism for nurses to
engage patients as active partici-
pants in every aspect of their health
(Scott, 2010). Patient shadowing
and care flow mapping were used to
create a sense of empathy and
urgency among clinicians by clarify-
ing the patient and family experi-
ence. These two approaches, which
were meant to promote patient-cen-
tered care, can improve patient sat-
isfaction scores without increasing
costs (DiGioia, Lorenz, Greenhouse,
Bertoty, & Rocks, 2010). A better
under standing of attributes of
patient-centered care and areas for
improvement is needed in order to
develop nursing policies that in -
crease the use of this model in health
care settings.
The purpose of this discussion is
to clarify the concept of patient-cen-
tered care for consistency with the
common understanding about pa -
tient satisfaction and the quality of
care delivered from nurses to
patients. Attributes from a customer
service model, the Gap Model of
Service Quality, are used in a focus
on the perspective of the patient as
the driver and evaluator of service
quality. Relevant literature and the
Gap Model of Service Quality
(Parasuraman, Zeithaml, & Leonard,
1985) are reviewed. Four gaps in
patient-centered care are identified,
with discussion of nursing implica-
tions.
Background and Brief
Literature Review
Patient-Centered Care
The Institute of Medicine (IOM,
2001a) and Epstein and Street (2011)
identified patient-centeredness as
one of the areas for improvement in
health care quality. The IOM (2001b)
defined patient-centeredness as
…health care that establishes a
partnership among practition-
ers, patients, and their families
(when appropriate) to ensure
that decisions respect patients’
wants, needs, and preferences
and that patients have the edu-
cation and support they require
to make decisions and partici-
pate in their own care… (p. 7)
Charmel and Frampton (2008)
defined patient-centered care as
…a healthcare setting in which
patients are encouraged to be
actively involved in their care,
with a physical environment
t ...
Patient Related Barriers Associated with Under Enrollment in Hospice: A ReviewQUESTJOURNAL
Background: Hospice care provides better quality of life compared with usual care, and focuses on caring, rather than curing. Many factors facing cancer patients at the last days of life prevent them from enrollment in hospice. Purpose:to identify the barriers associated with hospice under enrollment for terminally ill cancer patients. Methodology: an integrative literature review design was utilized, CINAHL, and PubMed were accessed by using key words (hospice, barriers, and cancer patients), and after applying inclusion criteria 8 articles were considered to meet the purpose of this review. Findings: through reviewing literatures,15% of hospice patients dis enrolled from hospice due to long-stay hospitalization, hospital death, & higher medicare expenditure with in sufficient insurance coverage (financial burden), and some other factors may contribute in under enrollment in hospice such as knowledge deficiency with misconception of hospice terminology and scope,mistrust of health care professionals, death timing, and some policies may create a barrier and restrict access to care for hospice. Conclusion:factors that may be associated with under enrollment of terminally ill cancer patients in hospice were lack of knowledge and misperception of hospice scope, emotional, physical and financial burden toward patient and family, death timing and bad quality of care
Quantitative/Mixed-Methods
American InterContinental University
March 27, 2018
Running head: QUANTITATIVE/MIXED-METHODS
1
QUANTITATIVE/MIXED-METHODS
2
Quantitative/Mixed-Methods
Abstract
Case studies which are done in the field of medicine work towards improving the health of the population. There are some of the parts contained in case studies which are abstract, results, limitations of results, conclusions, and applications. The common statistical methods used in research are descriptive numerical and qualitative thematic analyses. The results of the studies show that equal participation of individuals in the health sector will help boost public health. Limitations of results are that although some strategies may work towards improving health sector, not all of them are effective.
Public health is an important sector in any country for it directly affects the economy of the nation. There need to be certain ways which should be employed with the aim of supporting and improving public health. In this paper, I am going to examine 4 contemporary peer-reviewed articles which employ quantitative or mixed-methods concerning ways on how to improve the health of the public. The interest of the paper is to aid in achieving the best impact in public health sector via using programs which will improve health outcomes drastically. Enhancement of public health will in return help to improve the well-being of populations across the world. Public health awareness on how to avoid unhealthy lifestyles should be created.
In the articles, samples and populations used were appropriate for it showed the real representative of the population at hand. All the samples used in the 4-contemporary peer-reviewed articles fulfilled the rule of thumb hence making them appropriate. The samples used were suitable for they were used to estimate the population parameters for it stood for the entire inhabitants. The samples used were larger but not too large to consume more resources of money and time. The larger sample has helped to produce accurate results making the samples valid and appropriate. The appropriateness of the samples used in these articles, it has been proved via usage of target variance. In using target variance an estimate to be derived from the model eventually attained.
Each article which has been used includes having results, limitations of results, conclusions, and applications. The first contemporary peer-reviewed article is entitled, Refugee women’s involvements of maternity-care facilities in Canada: a methodical review using a description synthesis written by Gina MA Higginbottom, Myfanwy Morgan, Miranda Alexandre, Yvonne Chiu, Joan Forgeron, Deb Kocay and Rubina Barolia. The article was published 11 February 2015. The results show that there needs to have a healthier understanding of the aspects that produce discrepancies in availability, adequacy, and outcomes during parenthood care (Higginbottom, Morgan, Alexandre, Chiu, Forg ...
Patients' satisfaction towards doctors treatmentmustafa farooqi
The mood of the care recipient to see if the impression (expectations) of service are met by the patient may be defined as patient satisfaction. The current perspective on service efficiency tends to be that patient treatment meets public standards and requirements in terms of interpersonal support as well as professional assistance. (Hardy et al. 1996). For various reasons, customer satisfactions in the healthcare industry have been investigated. First it was important to decide on the extent and the degree to which patient care seekers, the meeting of drugs criteria and the continuous use of these services have effect, satisfaction as a quality of service metric, as well as allowing doctors and health services to better appreciate and use the input of the patient. (Ong et al. 2000). Consumer satisfaction with healthcare services is a multi-panel term that refers to the core facets of treatment and suppliers, while PS medical services with the quality enhancement systems from the patient context, full control of quality and the intended outcomes of services are considered to be of primary importance (Janicijevic et al. 2013). The Pakistani health system is being changed somewhat and there are wonderful scope for applying standard of services to health care. Patients in Pakistan now have access to increased quality health care. Obviously, the staff and staff are the most important winners of a successful health care environment of every community sector framework (Bakari et al. 2019). The medical clinic of today's study is the product of a long and complicated war of civilization to quantify produce and study and to give thought to the thoughtful (Fullman et al. 2017).
Patients' satisfaction towards doctors treatmentmustafa farooqi
The mood of the care recipient to see if the impression (expectations) of service are met by the patient may be defined as patient satisfaction. The current perspective on service efficiency tends to be that patient treatment meets public standards and requirements in terms of interpersonal support as well as professional assistance. (Hardy et al. 1996).
For various reasons, customer satisfactions in the healthcare industry have been investigated. First it was important to decide on the extent and the degree to which patient care seekers, the meeting of drugs criteria and the continuous use of these services have effect, satisfaction as a quality of service metric, as well as allowing doctors and health services to better appreciate and use the input of the patient. (Ong et al. 2000).
Consumer satisfaction with healthcare services is a multi-panel term that refers to the core facets of treatment and suppliers, while PS medical services with the quality enhancement systems from the patient context, full control of quality and the intended outcomes of services are considered to be of primary importance (Janicijevic et al. 2013).
The Pakistani health system is being changed somewhat and there are wonderful scope for applying standard of services to health care. Patients in Pakistan now have access to increased quality health care. Obviously, the staff and staff are the most important winners of a successful health care environment of every community sector framework (Bakari et al. 2019).
The medical clinic of today's study is the product of a long and complicated war of civilization to quantify produce and study and to give thought to the thoughtful (Fullman et al. 2017).
I need response for the following peerspeer 1 yedPractic.docxflorriezhamphrey3065
I need response for the following peers
peer 1 yed
Practice
Effective pain and symptom management is an important part of patients with life-threatening diseases and their families. Reducing pain and other symptoms does not only provide relief to suffering patients but will also eases the grief that families will face after the patient’s death (Sun et al., 2015). Nurses play a huge role in reversing the treatment of pain and other associated symptoms and should therefore possess basic competencies in the management of symptoms. To achieve quality outcomes, nurses need to use patients and family fears together with the knowledge and skills regarding symptom management using pharmacological, nonpharmacological, and integrative therapies (Paice et al., 2018).
Education
Nurses need to learn about the seriously ill , other vulnerable populations and the required prioritization. According to the American Nurses Association (2017), Content about palliative care should be included in any curricula including the academic and development settings. Nurses also need to utilize palliative care learning materials as provided by nursing organizations and agencies.
Research
Given that healthcare resources are limited, it is important that end of life care is evidence-based rather than solemnly based on the provider’s intuition. Chronically ill patients deserve quality, person-centered and evidenced-based care whether they are at the home, hospital, or any other facility. Evidence-based interventions help guide nurses in their choices of the most appropriate treatment plan (Black et al., 2015). Research also helps nurses highlight and be aware of the potential benefits and harms and make informed decisions based on the expected outcomes (Black et al., 2015).
Administration
An unhealthy work environment can lead to medical errors, conflicts and stress among healthcare teams, and ineffective care delivery (AACN, 2016). Due to these reasons, healthcare providers need to promote a healthcare environment that will benefit both the patient and the family. The goal is to provide quality care and leave the patient and family members fully satisfied.
peer 2 lin
End of life care constitutes several aspects, including pain and symptoms management, ethical decision-making, and cultural sensitivity. Advanced practice registered nurses as the superiors in clinical practice and care delivery at the system level. Nevertheless, challenges are emerging in palliative care clinicians' current surroundings necessitating the advanced training of registered nurses to provide care for every patient and their families.
Practice
- Identity, assess, and treat psychosocial and spiritual issues conceded with palliative care.
APRN nurses strive to improve their primary standards of palliative care. Thus, compelling them to seek palliative care knowledge for an overall improvement in providing care for a patient and people close to them (Hoerger et al., 2018). In thei.
PLAGDETECTOR
From Spouse To Caregiver And Back
By Up Beat
Submission Date: 2019-10-17 16:22:25 UTC
Submission ID: #6FD73C187C
File Name: From_Spouse_to_Caregiver_and_back.edited.docx
Word Count: 833
Character Count: 4264
14%
SIMILARITY INDEX
0%
INTERNET SOURCES
12%
PUBLICATIONS
9%
STUDENT PAPERS
1 7%
2 3%
3 1%
4 1%
5 1%
6 1%
Check #6FD73C187C
ORIGINALITY REPORT
PRIMARY SOURCES
Ågård, Anne Sophie, Ingrid Egerod, Else
Tønnesen, and Kirsten Lomborg. "From spouse
to caregiver and back: a grounded theory study
of post-intensive care unit spousal caregiving",
Journal of Advanced Nursing, 2015.
Publication
Margie E. Burns. "A Theoretical Model of
Spousal Caregiving Postintensive Care",
Nursing Science Quarterly, 2019
Publication
Submitted to University of the West Indies
Student Paper
Submitted to University of Wales Swansea
Student Paper
"Families in the Intensive Care Unit", Springer
Nature America, Inc, 2018
Publication
Submitted to Edith Cowan University
Student Paper
Exclude quotes On
Exclude bibliography On
Exclude matches Off
ORIGINAL RESEARCH: EMPIRICAL RESEARCH –
QUALITATIVE
From spouse to caregiver and back: a grounded theory study of
post-intensive care unit spousal caregiving
Anne Sophie �Ag�ard, Ingrid Egerod, Else Tønnesen & Kirsten Lomborg
Accepted for publication 17 February 2015
Correspondence to A.S. �Ag�ard:
e-mail: [email protected]
Anne Sophie �Ag�ard MScN PhD
Clinical Nurse Specialist
Department of Anesthesiology and Intensive
Care, Aarhus University Hospital, Denmark
Ingrid Egerod PhD
Professor
University of Copenhagen, Health &
Medical Sciences, Copenhagen University
Hospital Rigshospitalet, Trauma Center,
Denmark
Else Tønnesen DMSc
Professor
Department of Anesthesiology and Intensive
Care, Aarhus University Hospital, Denmark
Kirsten Lomborg MScN PhD
Professor
Faculty of Health Sciencies & Aarhus
University Hospital, Aarhus University,
Denmark
�AG �AR D A . S . , E G E R O D I . , T Ø N N E S E N E . & L O M B O R G K . ( 2 0 1 5 ) From spouse
to caregiver and back: a grounded theory study of post-intensive care unit spousal
caregiving. Journal of Advanced Nursing 71(8), 1892–1903. doi: 10.1111/
jan.12657
Abstract
Aim. To explore the challenges and caring activities of spouses of intensive care
unit survivors during the first year of patient recovery.
Background. Every year, millions of people globally are discharged from an
intensive care unit after critical illness to continue treatment, care and
rehabilitation in general hospital wards, rehabilitation facilities and at home.
Consequently, millions of spouses become informal caregivers. Little is known,
however, about the concrete challenges spouses face in post-intensive care unit
everyday life.
Design. Explorative, qualitative grounded theory study.
Methods. Participants were spouses of intensive care unit survivors. The study
was undertaken in Denmark in 2009–2010. Data consisted of 35 semi ...
Perspectives on Transitional Care for Vulnerable Older Patients A Qualitative...Austin Publishing Group
Transitional care for vulnerable older patients is optimal if, on top of the organization of transitional care, these patients and their informal caregivers have trust in the professionals involved. Regarding the challenge of organizing increasingly complex transitional care for vulnerable older patients, the focus should shift towards optimizing trust.
State Tested Nursing Aides’Provision of End-of-LifeCare in.docxdessiechisomjj4
State Tested Nursing Aides’
Provision of End-of-Life
Care in Nursing Homes
Implications for Quality Improvement
Emma Nochomovitz, MPH
Maryjo Prince-Paul, PhD, APRN, AHPCN, FPCN
Mary Dolansky, PhD, RN
Mendel E. Singer, PhD
Peter DeGolia, MD, CMD
Scott H. Frank, MD, MS
v An increasing prevalence in deaths occurring
within nursing homes has led to a growing
concern surrounding quality issues in end-of-life
(EOL) nursing home care. In addition, prior
research has failed to emphasize the importance
of state tested nursing aides (STNAs) in
providing this type of care. The purpose of this
study was to examine quality issues in EOL
nursing home care within the context of STNAs’
comfort in providing this care. A convenience
sample of 108 STNAs from four nursing homes
in the Cleveland, Ohio area used PDAs to
provide answers to an audio questionnaire.
Questions included emergent themes from the
literature pertaining to EOL care in nursing
homes, as well as materials from a national
education initiative to improve palliative care.
Findings demonstrated lack of comfort in
discussing death with nursing home residents
and their families and insufficient knowledge
surrounding EOL decisions and certain types
of EOL care. Overall, the level of comfort
providing EOL care was found to be associated
with STNAs’ perceived importance of EOL
care, understanding of hospice, and spiritual
well-being.
JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 255
Author Affiliations: Emma Nochomovitz, MPH, is
Research Analyst, National Quality Forum,
Washington, DC and Case Western Reserve
University, Cleveland, OH.
Maryjo Prince-Paul, PhD, APRN, AHPCN, FPCN,
is Assistant Professor, Frances Payne Bolton School of
Nursing, Case Western Reserve University, Cleveland, OH.
Mary Dolansky, PhD, RN, is Assistant Professor,
Frances Payne Bolton School of Nursing, Case
Western Reserve University, Cleveland, OH.
Mendel E. Singer, PhD, is Associate Professor,
Department of Epidemiology and Biostatistics, Case
Western Reserve University, Cleveland, OH.
Peter DeGolia, MD, CMD, is Director, Center for
Geriatric Medicine, University Hospitals Case
Medical Center and Associate Professor, Family
Medicine, Case Western Reserve University School of
Medicine, Cleveland, OH.
Scott H. Frank, MD, MS, is Director, Master of
Public Health Program, Department of Epidemiology
and Biostatistics, Department of Family Medicine,
Case Western Reserve University, Cleveland, OH.
Address correspondence to Emma Nochomovitz,
MPH, National Quality Forum, 601 13th St
NW, Suite 500 North Washington, DC 20005
([email protected]).
K E Y W O R D S
end-of-life care
hospice
nursing aides
nursing home
I
n recent years, the growth of the older segment of
the population and the prevalence of chronic illness
have led to increased institutionalization of the frail
and elderly prior to their deaths. In particular, nursing
homes have been identified as a place in which end-of-
life .
Similar to Development and evaluation of an intervention to support family caregivers of people with cancer to provide home based care at the end of life a feasibility study (20)
Report Back from SGO 2024: What’s the Latest in Cervical Cancer?bkling
Are you curious about what’s new in cervical cancer research or unsure what the findings mean? Join Dr. Emily Ko, a gynecologic oncologist at Penn Medicine, to learn about the latest updates from the Society of Gynecologic Oncology (SGO) 2024 Annual Meeting on Women’s Cancer. Dr. Ko will discuss what the research presented at the conference means for you and answer your questions about the new developments.
Prix Galien International 2024 Forum ProgramLevi Shapiro
June 20, 2024, Prix Galien International and Jerusalem Ethics Forum in ROME. Detailed agenda including panels:
- ADVANCES IN CARDIOLOGY: A NEW PARADIGM IS COMING
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- ARTIFICIAL INTELLIGENCE AND ETHICS
- GENE THERAPY
- BEYOND BORDERS: GLOBAL INITIATIVES FOR DEMOCRATIZING LIFE SCIENCE TECHNOLOGIES AND PROMOTING ACCESS TO HEALTHCARE
- ETHICAL CHALLENGES IN LIFE SCIENCES
- Prix Galien International Awards Ceremony
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
Ethanol (CH3CH2OH), or beverage alcohol, is a two-carbon alcohol
that is rapidly distributed in the body and brain. Ethanol alters many
neurochemical systems and has rewarding and addictive properties. It
is the oldest recreational drug and likely contributes to more morbidity,
mortality, and public health costs than all illicit drugs combined. The
5th edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) integrates alcohol abuse and alcohol dependence into a single
disorder called alcohol use disorder (AUD), with mild, moderate,
and severe subclassifications (American Psychiatric Association, 2013).
In the DSM-5, all types of substance abuse and dependence have been
combined into a single substance use disorder (SUD) on a continuum
from mild to severe. A diagnosis of AUD requires that at least two of
the 11 DSM-5 behaviors be present within a 12-month period (mild
AUD: 2–3 criteria; moderate AUD: 4–5 criteria; severe AUD: 6–11 criteria).
The four main behavioral effects of AUD are impaired control over
drinking, negative social consequences, risky use, and altered physiological
effects (tolerance, withdrawal). This chapter presents an overview
of the prevalence and harmful consequences of AUD in the U.S.,
the systemic nature of the disease, neurocircuitry and stages of AUD,
comorbidities, fetal alcohol spectrum disorders, genetic risk factors, and
pharmacotherapies for AUD.
Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
263778731218 Abortion Clinic /Pills In Harare ,sisternakatoto
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New Drug Discovery and Development .....NEHA GUPTA
The "New Drug Discovery and Development" process involves the identification, design, testing, and manufacturing of novel pharmaceutical compounds with the aim of introducing new and improved treatments for various medical conditions. This comprehensive endeavor encompasses various stages, including target identification, preclinical studies, clinical trials, regulatory approval, and post-market surveillance. It involves multidisciplinary collaboration among scientists, researchers, clinicians, regulatory experts, and pharmaceutical companies to bring innovative therapies to market and address unmet medical needs.
These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
4. Non-respiratory functions of the lungs https://academic.oup.com/bjaed/article/13/3/98/278874
- Video recording of this lecture in English language: https://youtu.be/lK81BzxMqdo
- Video recording of this lecture in Arabic language: https://youtu.be/Ve4P0COk9OI
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
- Link to NephroTube social media accounts: https://nephrotube.blogspot.com/p/join-nephrotube-on-social-media.html
New Directions in Targeted Therapeutic Approaches for Older Adults With Mantl...i3 Health
i3 Health is pleased to make the speaker slides from this activity available for use as a non-accredited self-study or teaching resource.
This slide deck presented by Dr. Kami Maddocks, Professor-Clinical in the Division of Hematology and
Associate Division Director for Ambulatory Operations
The Ohio State University Comprehensive Cancer Center, will provide insight into new directions in targeted therapeutic approaches for older adults with mantle cell lymphoma.
STATEMENT OF NEED
Mantle cell lymphoma (MCL) is a rare, aggressive B-cell non-Hodgkin lymphoma (NHL) accounting for 5% to 7% of all lymphomas. Its prognosis ranges from indolent disease that does not require treatment for years to very aggressive disease, which is associated with poor survival (Silkenstedt et al, 2021). Typically, MCL is diagnosed at advanced stage and in older patients who cannot tolerate intensive therapy (NCCN, 2022). Although recent advances have slightly increased remission rates, recurrence and relapse remain very common, leading to a median overall survival between 3 and 6 years (LLS, 2021). Though there are several effective options, progress is still needed towards establishing an accepted frontline approach for MCL (Castellino et al, 2022). Treatment selection and management of MCL are complicated by the heterogeneity of prognosis, advanced age and comorbidities of patients, and lack of an established standard approach for treatment, making it vital that clinicians be familiar with the latest research and advances in this area. In this activity chaired by Michael Wang, MD, Professor in the Department of Lymphoma & Myeloma at MD Anderson Cancer Center, expert faculty will discuss prognostic factors informing treatment, the promising results of recent trials in new therapeutic approaches, and the implications of treatment resistance in therapeutic selection for MCL.
Target Audience
Hematology/oncology fellows, attending faculty, and other health care professionals involved in the treatment of patients with mantle cell lymphoma (MCL).
Learning Objectives
1.) Identify clinical and biological prognostic factors that can guide treatment decision making for older adults with MCL
2.) Evaluate emerging data on targeted therapeutic approaches for treatment-naive and relapsed/refractory MCL and their applicability to older adults
3.) Assess mechanisms of resistance to targeted therapies for MCL and their implications for treatment selection
Tom Selleck Health: A Comprehensive Look at the Iconic Actor’s Wellness Journeygreendigital
Tom Selleck, an enduring figure in Hollywood. has captivated audiences for decades with his rugged charm, iconic moustache. and memorable roles in television and film. From his breakout role as Thomas Magnum in Magnum P.I. to his current portrayal of Frank Reagan in Blue Bloods. Selleck's career has spanned over 50 years. But beyond his professional achievements. fans have often been curious about Tom Selleck Health. especially as he has aged in the public eye.
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Introduction
Many have been interested in Tom Selleck health. not only because of his enduring presence on screen but also because of the challenges. and lifestyle choices he has faced and made over the years. This article delves into the various aspects of Tom Selleck health. exploring his fitness regimen, diet, mental health. and the challenges he has encountered as he ages. We'll look at how he maintains his well-being. the health issues he has faced, and his approach to ageing .
Early Life and Career
Childhood and Athletic Beginnings
Tom Selleck was born on January 29, 1945, in Detroit, Michigan, and grew up in Sherman Oaks, California. From an early age, he was involved in sports, particularly basketball. which played a significant role in his physical development. His athletic pursuits continued into college. where he attended the University of Southern California (USC) on a basketball scholarship. This early involvement in sports laid a strong foundation for his physical health and disciplined lifestyle.
Transition to Acting
Selleck's transition from an athlete to an actor came with its physical demands. His first significant role in "Magnum P.I." required him to perform various stunts and maintain a fit appearance. This role, which he played from 1980 to 1988. necessitated a rigorous fitness routine to meet the show's demands. setting the stage for his long-term commitment to health and wellness.
Fitness Regimen
Workout Routine
Tom Selleck health and fitness regimen has evolved. adapting to his changing roles and age. During his "Magnum, P.I." days. Selleck's workouts were intense and focused on building and maintaining muscle mass. His routine included weightlifting, cardiovascular exercises. and specific training for the stunts he performed on the show.
Selleck adjusted his fitness routine as he aged to suit his body's needs. Today, his workouts focus on maintaining flexibility, strength, and cardiovascular health. He incorporates low-impact exercises such as swimming, walking, and light weightlifting. This balanced approach helps him stay fit without putting undue strain on his joints and muscles.
Importance of Flexibility and Mobility
In recent years, Selleck has emphasized the importance of flexibility and mobility in his fitness regimen. Understanding the natural decline in muscle mass and joint flexibility with age. he includes stretching and yoga in his routine. These practices help prevent injuries, improve posture, and maintain mobilit
Recomendações da OMS sobre cuidados maternos e neonatais para uma experiência pós-natal positiva.
Em consonância com os ODS – Objetivos do Desenvolvimento Sustentável e a Estratégia Global para a Saúde das Mulheres, Crianças e Adolescentes, e aplicando uma abordagem baseada nos direitos humanos, os esforços de cuidados pós-natais devem expandir-se para além da cobertura e da simples sobrevivência, de modo a incluir cuidados de qualidade.
Estas diretrizes visam melhorar a qualidade dos cuidados pós-natais essenciais e de rotina prestados às mulheres e aos recém-nascidos, com o objetivo final de melhorar a saúde e o bem-estar materno e neonatal.
Uma “experiência pós-natal positiva” é um resultado importante para todas as mulheres que dão à luz e para os seus recém-nascidos, estabelecendo as bases para a melhoria da saúde e do bem-estar a curto e longo prazo. Uma experiência pós-natal positiva é definida como aquela em que as mulheres, pessoas que gestam, os recém-nascidos, os casais, os pais, os cuidadores e as famílias recebem informação consistente, garantia e apoio de profissionais de saúde motivados; e onde um sistema de saúde flexível e com recursos reconheça as necessidades das mulheres e dos bebês e respeite o seu contexto cultural.
Estas diretrizes consolidadas apresentam algumas recomendações novas e já bem fundamentadas sobre cuidados pós-natais de rotina para mulheres e neonatos que recebem cuidados no pós-parto em unidades de saúde ou na comunidade, independentemente dos recursos disponíveis.
É fornecido um conjunto abrangente de recomendações para cuidados durante o período puerperal, com ênfase nos cuidados essenciais que todas as mulheres e recém-nascidos devem receber, e com a devida atenção à qualidade dos cuidados; isto é, a entrega e a experiência do cuidado recebido. Estas diretrizes atualizam e ampliam as recomendações da OMS de 2014 sobre cuidados pós-natais da mãe e do recém-nascido e complementam as atuais diretrizes da OMS sobre a gestão de complicações pós-natais.
O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
Vamos discutir essas recomendações no nosso curso de pós-graduação em Aleitamento no Instituto Ciclos.
Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
Development and evaluation of an intervention to support family caregivers of people with cancer to provide home based care at the end of life a feasibility study
2. Most patients, when asked, report that they wish to die at home
(Higginson and Sen-Gupta, 2000; Department of Health 2008).
Carers who cannot cope with the demands of managing care and
patient symptoms (even with home support), may abandon home
care and request an emergency transfer of their loved one to hos-
pital (Wiese et al., 2008). Nonetheless many people are cared for at
home with the support of district nurses (DN's), other specialist
nurses and general practitioners (GPs). Such contact with health
care staff may provide opportunities for family carers to learn
caregiving and palliative care skills, which could help prevent
hospital admissions.
There is little research to date on the benefits of physically
focussed home care interventions for carers of family members
receiving palliative care (Hudson et al., 2005). Research is needed
that focuses on well defined and evaluated interventions, which
offer practical information and identify skills that enable carers to
provide optimal care, while maintaining their own heath and
wellbeing.
Aims of study
The aims were twofold: a) to develop an intervention to address
carers' needs for practical information, support and skills b) to
conduct a pragmatic evaluation of the intervention as to its: i)
acceptability to family carers, ii) acceptability to health care pro-
fessionals and feasibility to adopt into their everyday practice, and
iii) outcomes for family carers (e.g. caregiver burden and satisfac-
tion, competence, preparedness to care).
The study was guided by the MRC framework for the design
and evaluation of complex interventions (Medical Research
Council, 2008). This guidance emphasises an iterative and
cyclical approach and clearly conceptualizing the problem under
study within its context. This aids the development and under-
standing of the intervention, and optimises the evaluation pro-
cess. The study was reviewed and accepted by the UK National
Research Ethics Service REC reference 11/H1014/3 in February
2011.
Study design sampling and methods
Study design
The study was structured into two phases. Phase 1 focussed on
the development of the intervention and phase 2 evaluated the
intervention from the frame of reference of carers and District
Nurses (DNs).
Developing the intervention phase 1
The aim was to develop an intervention based on available ev-
idence (Bee et al., 2008; Caress et al., 2009), and to extend the
evidence through individual and group interviews with current and
recently bereaved carers. As outlined in the MRC guidance, we were
attuned to contextual factors and recognised that a well-developed
structure of community/home based palliative care exists in the UK.
The intervention would likely be most useful if it was developed in
conjunction with those professionals who provide care in this
setting. Therefore at the beginning of the project we involved DN's
specialist palliative care nurses, GP's, hospice staff, a pharmacist
and carers by setting up an advisory group of 12 people. Health
professional input was obtained via the advisory group which met
five times during the development phase (one year) and eight
times in total.
Recruitment of carers
Recruitment of carers via DNs was challenging. A convenience
sample of carers was recruited from hospices and one community
district. Posters were put up in hospice day centres and nurses
attended site and team meetings and were asked to identify carers
who met the following criteria: i adult (over 18), ii care(d) for a
family member/friend at end of life (defined as last year of life), iii
reside(d) with the patient and iv consented to participate in the
study. Participants were volunteers recruited via notice boards and
by direct approaches from staff. In total 180 information packs for
carers were distributed, resulting in the recruitment of 29 carers, of
these carers 11 were current carers and 18 were bereaved.
Data collection
All carers took part in semi-structured interviews either in a
group or individually. Sixteen carers chose an individual interview
and three group interviews were conducted. No demographic de-
tails were collected since the aim of the interviews was to explore
the problems carers experience(d) in providing care and the
knowledge, practical skills and other supports they considered
important to provide physical/technical care in the home for their
relative/friend at the end of life. In addition the interviews explored
the ways and style in which carers preferred to receive information.
Each group interview began with a welcome, introductions and an
explanation of the study and procedures to be followed concerning
confidentiality. The topics covered were as listed above the same as
in the individual interviews.
Analysis
Interviews were audio-recorded (with the permission of par-
ticipants), transcribed and analysed using Framework Analysis, a
method often used in health services research to manage open
ended data (Ward et al., 2013). This process involved familiar-
isation, identifying commonalities or themes, indexing and inter-
pretation. Data were managed using the qualitative computer
package NVivo 9. The purpose of the analysis was to identify the
most common practical nursing problems faced by carers and their
other practical concerns whilst caring for somebody in the last
weeks of life. We also focused on the comments carers made con-
cerning the medium in which they wished to receive information
and the practical issues involved in accessing information. The
views of the carers (common problems and issues in accessing in-
formation) were presented back to the advisory group and further
elaborated upon culminating in an agreed problem list around
which evidence based interventions could be formulated.
The intervention
From carer interviews it became apparent that what carers
wanted was a single source of information that could be accessed
anywhere in the home without reliance on equipment or electronic
devices, such as a dvd player, computer or tablet. The following data
extracts give some insight into the preferences of the carers:
“I think possibly a video, but definitely a booklet on the things to
expect, as a person gets worse with cancer or may be the different
aspect of cancer that they may have and what help is available”
Hlsh01.
“—Yes for people who have computers, but there are people who
don't have computers or are not computer literate. You go on the
internet or you go and find out locally, you'll go to the library or
you'll send a family member if you are too busy, you need some-
thing instant” HscbfgP1.
“I think some sort of carers' booklet would have helped some-
thing that would just give you some Information, we honestly did
not know how to access Macmillan care” Hsbc19.
K. Luker et al. / European Journal of Oncology Nursing 19 (2015) 154e161 155
3. Whilst carers' preference for a booklet comes as no surprise,
although when discussed at the advisory group there was some
regret that more elaborate forms of information access were not
favoured especially since the budget would extend to multimedia
productions. We explored with the carers and professionals on the
advisory group whether the booklet should be loose leaved such
that carers would only receive information when required, our
concern was worrying people unnecessarily about problems that
may not occur. The health professionals on the advisory group
considered that giving information as required would introduce
uncertainty regarding its delivery, especially if the information was
to be given out by DNs who may not visit everyday, or may not have
the relevant paperwork to hand, especially if covering for a
colleague. Carers on the advisory group thought that it would give
DNs too much control and carers should be allowed to decide what
they read. We therefore decided that the intervention would take
the form of a single booklet. In terms of the topics/problems
covered in the booklet the potential list was wide-ranging, however
the most frequently mentioned problems and concerns in the in-
terviews were used as the template and the following topics were
incorporated: pain, common bladder problems, common bowel
problems, loss of appetite, nausea and vomiting, breathlessness,
pressure sores, mobility, equipment, personal care, emotional as-
pects, support for carers, nearing death and bereavement.
The research team compiled the booklet in a user friendly way
in partnership with the professional experts and carers on the
advisory group. The format was standardised and agreement
reached by consensus at the advisory group meeting such that each
topic followed the headings:
What causes the problem
How to help
Common concerns
Useful resources
The booklet went through three rounds of review and refine-
ment, which involved presenting the booklet to carers and pro-
fessionals working in palliative care. These reviewers were
identified informally by carers and professionals on the advisory
group. The final decisions about changes to content and format
were made by the advisory group. The booklet was finalised then
assessed by the Plain English Campaign and awarded the Crystal
Kite Mark, before being published in a high quality format (see
online supplementary file for a copy of the booklet).
Evaluating the intervention phase 2
To evaluate the booklet's acceptability and utility, our target was
a sample was 30 carers. This is considered to be sufficient to gauge
acceptability or not of an intervention in a feasibility study
(Lancaster et al., 2004).
Recruitment of carers
Carers meeting the criteria outlined in phase one, who were
currently caring (not bereaved) for somebody in the last year of
life (as estimated by the nurse or GP), at home were our target
population. In order to be eligible for the study the patient had to
be in receipt of District Nursing services. Carers were recruited via
DNs. And meetings were held with DN's in two community dis-
tricts; where the study was explained and we asked for volunteers
to recruit carers meeting the criteria. The DNs were slow to
volunteer despite encouragement from managers and the research
team on a weekly basis, so we extended our recruitment to four
community districts and one hospice in the North West of
England.
The recruitment process for carers was as follows: invitation
letters and information packs were left with participating DNs to
distribute to carers. Regular contact was maintained with the DNs
to monitor carers' circumstances (e.g. death of patient or hospi-
talization). We also recorded the number of information packs
given to DN's to distribute to carers (414 packs in total). If interested
in participating carers returned the consent slip in a prepaid en-
velope to the research team, who then contacted the carer to see if
they had any questions and to arrange an appointment to visit the
home. For the hospice the process was similar but occurred via the
day care facility. In total 26 DNs joined the study and 62 carers were
referred via DNs and hospice nurses.
Data collection
Data collection was based on expected carer outcomes as
identified in the literature. The primary outcomes were: increased
carer satisfaction, preparedness and competency with caring and
decreased report of carer burden. Secondary outcomes were re-
ductions in carer anxiety and depression and improved symptom
control (carers' perception). The following well validated and
commonly used questionnaires were administered at the first
home visit after written consent was given and the researcher had
introduced and explained the booklet to the carer.
1 Caregiver burden and satisfaction were assessed using the
following questionnaires:
a. The Family Apprisal of Caregiving Questionnaire: positive
caregiving subset of 7 items and caregiver strain subset of 8
items (Cooper et al., 2006).
b. Caregiver Competence Scale, a 4 point likert scale (Schumacher
et al., 1998);
c. Preparedness for the demands and tasks of caring, 8 items
(Archbold et al., 1990);
2. Anxiety and depression were measured using the HADS
(Zigmond and Snaith, 1983);
3. Health and wellbeing was assessed with the SF12v2 Health
Survey (Medical Outcomes Trust, 2002).
In addition, a single item Likert scale of perceptions of patient
symptom management was developed for this study: “I feel I can
manage my family member's/friend's symptoms” was completed
by the carer. Carers were also given a diary/log to record their use of
the booklet and any thoughts they might have had on its
usefulness.
Thirty-one baseline data sets were completed but a further 31
carers were non-contactable or withdrew before the baseline data
were collected. The reasons for withdrawal before baseline were:
could not be contacted on three occasions, away on holiday or
changed their mind. After successful completion of the baseline
data appointments were made for the researcher to revisit a min-
imum of four weeks or a maximum of 6 weeks later to collect
follow-up data. This time line meant that carers had minimally a
month to use the booklet and form an opinion on its utility.
Follow-up data collection carers
Follow-up data using the above questionnaires supplemented
by semi-structured interviews of up to 30 min were conducted
with 24 carers in their home (7 carers withdrew: 5 due to death
of patient and 2 for unknown reasons). The interviews focussed
on how and when the booklet was used, what was useful and
what was not and how the booklet could be improved. The log/
diary was collected at this visit, but was only completed by 12
carers.
K. Luker et al. / European Journal of Oncology Nursing 19 (2015) 154e161156
4. Follow-up data collection nurses
District nurses who had referred carers to the study were also
individually interviewed; in total 14 DNs were interviewed (some
nurses had recruited more than one carer). The interviews were
brief (approximately 10 min) and usually conducted over the
telephone because our interest was only in their opinions on the
booklet. The interview included questions on how and when the
booklet was used, what was useful or not, and how the booklet
could be improved. The focus was on the usability of the booklet
and the possibility of its integration into everyday practice. All in-
terviews were audio-recoded and transcribed.
Data analysis
Questionnaire data were analysed using SPSSv20 (IBM Corp,
2011). Questionnaire items were recoded as appropriate for anal-
ysis following published manual instructions. Given this was a
feasibility study it was not powered to demonstrate statistical
significance and analysis of outcome measures concentrated on
their estimation pre-intervention and post-intervention (Lancaster
et al., 2004). Changes in scores (using paired data) were examined
to see whether they lay in the anticipated direction. Normality was
assessed using the ShapiroeWilk test and probability plots. Data
were analysed by parametric (t-test) or non-parametric (Wilcoxon
signed-rank test), as appropriate, in order to establish whether the
difference between baseline and follow-up scores were statistically
significant. Both baseline and follow-up scores were compared to
the published cut-offs or mean scores.
Each item in the booklet was listed in the diary log and carers
were invited to identify their use. These notes and transcripts from
the interviews with carers and district nurses were analysed
thematically (Boyatzis, 1998). A coding framework of inductive and
deductive codes were developed from the interviews with carers,
district nurses and the diaries. These codes were then grouped into
themes and reported in accordance with the aims of the study. Data
were managed using NVivo 9.2.
Findings
Carers were aged 31e82 (mean 62 years old) and cared for
people aged 50e92 (mean 70 years old). Eight carers (26%) were
male and 23 (74%) were female. Twenty (65%) cared for their
partner, 8 (26%) cared for a parent and one cared for a sibling (2
unknown). Only 4 carers were recruited from a hospice.
Interview data were considered alongside quantitative scales in
order to gauge the usefulness of the booklet, and the acceptability
of the information and the presentation format.
Data were collected at baseline and follow-up (Table 1). The only
statistically significant finding related to the 7 item ‘positive care-
giving subscale (Cooper et al., 2006).
Interview data: carers
Acceptability to family carers
Carers reported a high level of satisfaction and acceptability
with the booklet; they highlighted the clear accessible language
used, the presentation style, and conciseness. The following quo-
tations demonstrate the booklet's acceptability to people with
limited reading skills:
“It's in plain English what you can understand, no fancy words or
anything what people don't understand.” SCP27KB
“To me, that's just right for me to read … because I'm not brilliant,
you know”. PC14PC
The use of clear signposting to appropriate organisations within
each section positively contributed to the booklet being user
friendly. Other carers summarised their thoughts on the accept-
ability of the booklet:
“It was very useful, I think it puts everything nicely into a context,
it's very clear, it gives you what you need without any extraneous
information that clouds the issue sometimes and, like I say, it's very
practical and straightforward, you can go through those steps and
if you’re still struggling, you know which professionals are the key
ones and it's getting telephone numbers and that, as well, once
you’ve got the number.” PC06SW
Carers also found the practical tips helpful and accessible:
“[I like the booklet] because it's handy. And it's not the definitive
bible, and that's what I like about it; it's one page, and practical
things to do on one page, do you know, so, I'm not trawling through,
Table 1
Baseline and follow-up scores on core quantitative interview outcome measures.
Questionnaire P Cut-off/M Mean score
baseline
Mean score
follow-up
Mean diff [Post-pre]
(95%CI)
Interpretation
Positive caregiving subset (Cooper et al., 2006;
a ¼ 0.73)
0.015 4.01 4.04 4.23 0.23
(0.05,0.40)
(1e5)
Higher ¼ better
Caregiver strain subset
(Cooper et al., 2006; a ¼ 0.86)
0.91 3.17 3.04 3.10 0.01
(À0.18,0.20)
(1e5)
Higher ¼ worse
Caregiver Competence Scale
(Schumacher et al., 1998)
0.27 N/A 1.68 1.58 0.09
(À0.26,0.08)
(1e4)
Higher ¼ worse
Preparedness
(Archbold et al., 1990; a ¼ 0.93)
0.21 N/A 2.82 2.98 0.14
(À0.09,0.37)
(0e4)
Higher ¼ better
Perception of patient symptom management 0.66a
N/A 3.55 3.75 0.21
( 0.14,0.56)
(1e5)
Higher ¼ better
HADS
(Zigmond and Snaith, 1983)
(A1
) 0.33a
(D1
) 0.70
(A) 8/9
(D) 8/9
(A) 8.71
(D) 7.77
(A) 8.17
(D) 8.04
(A) À0.54
(À1.96,0.87)
(D) 0.25
(À1.06,1.56)
(1e21)
Higher ¼ worse
SF12v2 Health Survey
(Medical Outcomes Trust, 2002)
(P2
) 0.60
(M2
) 0.66
(P) 50
(M) 50
51.13
41.49
49.62
42.47
(P) À0.96
(À4.50,2.63)
(M) 0.64
(À2.36,3.65)
(0e100)
Higher ¼ better
1: A ¼ Anxiety subscale; D ¼ Depression subscale. 2: P ¼ Physical Health subscale; M ¼ Mental Health subscale.
*Median.
a
Wilcoxon Signed Rank Test.
K. Luker et al. / European Journal of Oncology Nursing 19 (2015) 154e161 157
5. you know, 2 hours of information to come up with an objective, you
know, I can go straight away and try things out there”.
This carer went on to explain:
“I like this book, because it goes, ‘try this’, ‘try that’, you know, that's
the thing I like about it”. SM03CH
Many carers compared the study booklet with other leaflets and
booklets that they had encountered during their relative's illness.
All carers indicated their preference for the study booklet over
other information booklets. The primary reasons for this were again
the accessibility and ease of use.
“This is probably the one that's in more plain English, you know,
and that's what I liked about this, it was easy to read”. PC05RG
“Macmillan, they sent me a booklet, which I read that as well,
which is very similar in advice for loss of appetite and the way
the illness can get worse as it is, yeah.
Interviewer: But when you had those questions you looked at that
one or did you look at the Macmillan…
Respondent: I look at this one … I find it is quite well done actually
and it is easy to understand, and there's no flowery messages in it
or anything like that. It's just straightforward and simple.” SCP28KB
Timing of need for information
A number of issues were raised regarding the optimal time point
to provide carers with the booklet. Many carers had some existing
knowledge of the topics covered in the booklet, usually gained
through prior experiences of being a carer. Whilst ‘new’ carers
found the booklet informative and appropriate, more experienced
carers sought more in-depth and specific information. However,
these carers generally agreed that the booklet was a good starting
point and that it was useful to have all the information and contacts
in one place. Other carers said that it would have been beneficial to
have had the booklet earlier in the illness trajectory, as they had
found out many things through trial and error. In these cases the
booklet was less useful in regards to preparedness.
“it's a very, very good book, you know, and probably excellent for
somebody who has just got into the situation, but when you’ve
been doing it, like, six months, or so, like I've been doing, you, kind
of, get into a routine.” PC05RG
The following extract provides a specific example of how the
booklet would have been helpful if received earlier:
“We were having problems with her taking medication regularly and
one thing that I've had done was the blister pack at the chemist, which
is mentioned in the book, but I didn't know about that, if I'd have had
the book at the beginning, that would have been so much easier to sort
things out and it is in the book, but I had already had that done.”
PC06SW
A number of carers commented that that they would have liked to
have received the booklet at the point of diagnosis so that they could
have been better prepared. However, other carers noted that they may
not read the end of life sections if they were given the bookletearlier in
the illness trajectory, but felt reassured in the knowledge that it was
there for them when they were ready to read it as this quotation
illustrates:
“I've not really thought about that because it's something I don't
really want to think about until I know I need to … I like put it at the
back of my mind till that actually happens”. PC10CG
By comparison, another carer described how, on coming home
from hospital with her husband after they received his diagnosis,
she immediately began to look up information on his illness on the
internet and with the Macmillan booklet they were given. She
explained:
“I want to know what's going to happen and I want to know what's
going on.” SCP27KB
The above quotations highlight the differences between indi-
vidual preferences for information.
Carers suggested a range of possibilities for distributing the
booklet; this included directly from the GP or DN, or being freely
available to pick up from the GP surgery waiting room or hospice.
One carer felt that it was important to build giving out the booklet
into standard practice to avoid anyone being missed out.
Carers in this study used the booklet in a variety of different
ways; some read the booklet cover to cover, and then referred back
to particular sections at an appropriate time. Others chose not to
read sections on end of life care, as described above. The findings
suggest that giving people information at the beginning of their
role in caring for someone with cancer is important, as it allows
them to be empowered in how they choose to use it.
Views of family carers: caregiver burden, satisfaction, competence,
preparedness to care
Overall, carers indicated that the booklet had proved to be a
useful resource in providing advice on practical care at home. The
findings suggest that the main benefit was that the booklet was an
important source of reassurance for carers and helped to increase
their confidence in caring.
“No-one knows everything, and I knew very little because I was
learning. Some things I knew anyway, but it gave me confidence,
and reassurance that is maybe the right thing to do, or is the right
thing to try, and to, so, yeah, I was quite reassured by it really”.
SM03CH
Several carers reported that the booklet was a source of reas-
surance in regards to common symptoms and symptom
management.
“[The booklet advised] don't try and force it and don't get upset if
they don't eat it. I found that quite comforting because that must
mean it's the same for everybody, you know. I might have tended to
think, oh is it me, is it because I'm a rotten cook! The booklet sort of
said it's quite normal. It's reassuring more than anything, you
know, being able to look and be reassured that you’re not missing
anything or doing anything wrong. That's what I found best”.
SM02SS
Reassurance in that these symptoms are common and are
experienced by other people with cancer. The following quotation,
for example, suggests that this carer may have felt less isolated or
alone knowing that others were likely to have similar experiences.
“It made you feel that what was happening was what happens
when people are poorly … And that I was dealing with it” PC04JN
The following quotations are also important as they suggest that
the booklet widened people's knowledge of what support was
available to them. For example, rather than contacting a DN with
enquiries, carers suggested they were able to draw on information
in the booklet or contact an appropriate organisation that was lis-
ted in the booklet.
K. Luker et al. / European Journal of Oncology Nursing 19 (2015) 154e161158
6. “It was a guide, you see. I saw it as a guide in the right direction for
me to use, otherwise I might have got a little bit panicky, and on the
phone to the district nurses all the time. So, it did help”.SM18HP
One carer also indicated that the booklet provided her with the
confidence to contact appropriate supportive organisations, which
had a positive impact on providing care at home.
“It didn't feel like, ‘I mustn't get other agencies; I ought to do it
myself’, it made you realise that those agencies are out there, and
once you are involved with them, you realise how good they are,
how pleasant they are, and how much they want to help you as
well as the patient, so I did find that”. PC06SW.
“It was this confidence backup thing that was really what you get
from all the resources that are put in, the fact that you've got your
phone numbers there”. PC06SW
The booklet also helped carers with physical and practical as-
pects of care.
“Confirmation that I was doing the things that I knew to be right,
and then there was things that I didn't know that I was able to look
at and think, “oh yeah”.” PC26CG
A number of participants also described how they found the end
of life sections of the booklet useful and reassuring, particularly in
regards to preparedness for death.
“It was beneficial in a way I was so upset and stressed. I referred to
that because I didn't know what was happening with him. I wasn't
sure, and I remember you saying the body shuts down. It's nature's
way of the way we die, but I was just worried because I thought, is
he in pain? Is he aware of it? When I read that book, and it said that
probably the person who is caring for them is more stressed than
the person who is actually dying. They're probably not aware. So,
that helped calm me down quite a lot because I was getting to the
point, what can I do, where will I go? It got me like that, but when I
read that, I did calm down quite a lot … It was reassuring. Like I say,
I used it as a guide, but it did give me a lot of comfort, that part,
especially near the end. It was invaluable for me”. SM18HP
Interview data: DNs
Acceptability to DNs and feasibility to adopt into everyday practice
Overall, DNs were very satisfied with the booklet and provided
positive feedback. The majority of district nurses believed it would
be feasible and worthwhile to incorporate the booklet into their
day-to-day practice.
“I liked it very much, yeah I thought it was a good book, it covered
all the common things that carers need to know about. It was very
beneficial I liked it a lot”. SMDN21
The DNs who took part in this study expressed satisfaction with
the style, formatting and conciseness of the booklet, which they felt
contributed to it being a user-friendly resource for carers.
“I thought it was very good, very easy to read. Not a lot of jargon in
it is there, you know, for the carer. So the people that I did mention
it with and look at it, they, you know, thought it was very useful”.
BNDN15
Several district nurses commented on the usefulness of the
moving and handling diagrams and pictures of equipment. The
nurses explained that it could sometimes be difficult to explain
verbally, so it was very useful to have pictures to refer to in addition
to their verbal explanation.
“I particularly liked the inclusion of the advice about how to move
people, you know, how to turn them and transfer them, which is
something we do tend to get asked about. And also the photographs
of the various equipment they produce, SMDN21
In addition to these findings, one district nurse suggested that
the booklet helped her to see things from a carer's perspective
rather than a nursing perspective. She explained:
“I think it's made me think more of not just going in as a nurse but,
like I said, knowing that the carers have got something there, that
somebody's actually interested in them, and they're looking at it
from a different angle than from a nursing angle”. PC04DN
Comments from DNs regarding timing and access to the booklet
supported comments made by carers. Generally DNs agreed that
many carers would benefit from having access to the booklet earlier
in the illness trajectory, but noted that this posed organisational
challenges; because DNs often become involved with patients in
the later stages of the illness when they require help with physical
care, or have complex medical needs.
District nurses reported a decline in the number of phone calls
they received from clients who were participating in the study.
Comments from carers indicated that the booklet acted as a valued
source of reassurance; confirming that they were doing the right
thing, and helped to answer some of the questions they may have
otherwise contacted the district nurse about.
Discussion
This is one of a small number of studies that has been conducted
with carers of people who are dying at home and receiving district
nursing care. As a feasibility study it was not powered to detect
statistical significance, nevertheless there was one statistically
significant finding (Table 1) and that was in relation to positive
caregiving (Cooper et al., 2006). This (positive caregiving) was
supported by the interview data, and suggests that the booklet may
have the potential to have a positive impact for carers, and district
nursing teams by reducing uncertainty and promoting reassurance.
This is encouraging, but since this was a feasibility study in order to
assess the booklets true impact and potential an RCT is needed and
positive caregiving could be a useful outcome measure in this work
as could the monitoring of the frequency of telephone calls to DN's
for assistance.
However it is always difficult in palliative care populations to
measure positive changes over time and to gauge clinical relevance
of findings due to the inevitable deterioration of the patient as they
approach death and the consequent anxiety and emotional stress of
the carer. A major limitation of this study was that the intervention
focussed on support for the provision of physical care. In addition
only families in receipt of D.N. services received the booklet and
their other needs may have been met by the service hence posi-
tively impacting on their opinion of the booklet. Hence the booklet
in this study should be seen as an adjunct to the provision of district
nursing services.
Leaders in this field have noted the need for well-designed and
evaluated supportive intervention studies that focus on addressing
caregivers' needs (Grande et al., 2009). This study makes a contri-
bution to this area of research, as there is a dearth of intervention
studies which speak directly to carers' needs to provide practical
nursing care at home. In addition the majority of carers were
K. Luker et al. / European Journal of Oncology Nursing 19 (2015) 154e161 159
7. recruited from community settings rather than a hospice. Despite
the difficulties in engaging the participation of DN's in the study
which we attribute to major structural reorganisations of the ser-
vice, their involvement is a key strength of the study, as little
research conducted in community settings involves DNs.
The booklet intervention was considered to be of high quality by
both carers and nurses. If the booklet was adopted in everyday
practice by DNs and GPs it may have the potential to support carers
with everyday practical physical care tasks and provide reassur-
ance. It may also reduce the number of telephone calls to DNs and
other staff for advice, and may facilitate more people to die at
home, for many their place of choice (Gomes et al., 2013). Clearly
these assumptions regarding potential benefits would need to be
tested in an RCT. The timing is probably optimum for such a trial
since facilitating more people to die at home would take pressure
off acute hospital beds. The Palliative Care Funding Review in En-
gland (Hughes-Hallett et al., 2011) suggested that the NHS could
make savings of as much as £180 million if palliative care was
removed from acute hospitals. Interventions of the kind described
here may have a contribution to make in achieving this goal. In
addition given the focus worldwide on enabling people to die in
their place of choice and avoiding acute hospital admissions at the
end of life there is an urgent need to build research and imple-
mentation capacity in district nursing services, if further research
work is to be undertaken in this increasingly important
environment.
There were issues raised by carers on the timing of the delivery
of the intervention since it may have had an effect on its usefulness;
carers felt that it would have been more useful if they had had the
booklet earlier in the illness trajectory. This is difficult to address as
community nursing teams may only become involved in a person's
care in the latter stages of illness, hence recruiting to the study in
this way may be seen by some as a limitation. Conversely, it may be
inappropriate to give the booklet to a patient and their family at the
time of diagnosis, due to the sections on end of life and bereave-
ment. However thought needs to be given as to whether this
intervention could be made available in hospital palliative care
clinics or even in hospices.
The booklet contains practical information which was accessible
and readable by carers and was reported to be of benefit to them.
There is potential to adapt the booklet to make it available to other
disease groups beyond cancer and to explore the best route and
timing for delivery.
The significant improvement in scores relating to ‘positive
caregiving’ (Cooper et al., 2006) suggests that the booklet may have
a measurable positive impact on family caregivers. The booklet
provided reassurance for carers of people with cancer; carers' re-
ported that their confidence in caring was raised, the HADS scale
was not significant, however the qualitative data does support the
notion that the booklet provided reassurance.
Conclusions
This was a feasibility study and it raises practical questions with
respect to timing and delivery of the booklet intervention that
preclude planning for a large scale trial at this time, which might
have been the logical next step. In addition it highlights the
importance of working with carers to develop interventions. The
booklet intervention was perceived as useful and relevant by carers
and DNs (more so than other available media). Such clearly iden-
tified practical information which is readable and accessible for
carers was of benefit to carers as well as DNs in their role. The
combining of semi-structured interviews with quantitative scales
permitted us to unravel the importance of reassurance as a po-
tential outcome. This study also demonstrates carers' willingness,
even when faced with adversity in this case death, to be involved in
research involving the completion of assessment tools. Carers were
however reluctant to complete the log/diary and in future work we
would omit this as a data collection tool.
This study highlights the difficulties of recruiting through dis-
trict nursing settings. Recruitment to this study via DNs was diffi-
cult, despite great efforts by the research team such as doubling the
number of community districts involved and keeping in weekly
contact with the nurses. Nevertheless by being persistent we were
able to recruit the majority of carers via this route and to achieve
the study aims. Recruitment via this route brings its own limita-
tions and the booklet at this stage should be viewed as an adjunct to
district nursing care, since having access to a DN could have
influenced carers in their evaluation of the booklet.
Acknowledgements
The research team would like to thank the Carers, District
Nurses and Advisory Group Members who participated in this
study.
Appendix A. Supplementary data
Supplementary data related to this article can be found at http://
dx.doi.org/10.1016/j.ejon.2014.09.006.
Funding
This work was funded by the National Institute of Health
Research (NIHR) under its Research for Patient Benefit (RfPB) Pro-
gramme (Grant Reference Number PB-PG-0609-19059). The views
expressed are those of the authors and not necessarily those of the
NHS, the NIHR or the Department of Health.
Conflict of interest
None.
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