Catherine Pouget Award
In remembrance of our colleague and friend Catherine Pouget, Mapi has set up a prize which bears Catherine’s name, to be awarded annually for research contributing to the improvement of the quality of life for the terminally ill.
After a long and courageous battle against cancer, Catherine died on 3 July 2001 at the age of 31.
Catherine was one of the first to join Mapi in 1995. She had a real passion for the science of language and managed countless translations of questionnaires and played a vital part in structuring the linguistic validation department which now numbers over 50 people. Besides her project work, Catherine’s efforts were devoted to internal staff training and lectures on translation issues at the University of Lyon. She was also in charge of building up and consolidating Mapi’s worldwide network of consultants. She is greatly missed not only for her contribution to our activity, but also as a friend with whom we shared cherished moments.
During the last year of her life she suffered greatly…not just from the effects of her illness and its treatment, but also from the lack of understanding and compassion she received from her medical care providers. In her memory, Mapi has for several years offered an award to support the design and implementation of projects intended to improve the quality of life of those who are terminally ill.
From 2009, the emphasis of the award has been more specific and more relevant to its original intention: to improve the quality of the interactions between patients and those involved in their treatment, rather than their quality of life in general.
The Award is intended to improve the care of patients in terminal illness, including the education of those who care for them. It is not limited to projects with a scientific basis; if you have not received formal scientific training, you may also make good use of your experience and ideas, and put forward relevant proposals. Whether scientific or not, your proposal may focus upon patients’ families, medical and other carers, or patients themselves, but your objective will always be to improve the quality of care received by patients with terminal illness. Younger investigators and others are especially encouraged to apply.
Your application will be evaluated by senior staff members of Mapi Research Trust and its Advisory Committee. One award of up to a maximum of $10,000 will be made each year. The proposed work should be completed in not more than two years..
The criteria for evaluation of your application for the award are Appropriateness (relevance to the purpose stated above); Imaginativeness (originality of the concept and/or method of execution and evaluation); Realism (likelihood that the defined objective and its evaluation will be achieved within the intended period); Generalisability (usefulness/transferability to other people or institutions in the field). An account of the background to your proposal is not required unless you consider that this is especially relevant. However, you should clearly answer the following questions:
a. What is the specific problem that you intend to explore?
b. What method(s) will you choose in order to solve this problem?
c. What methods do you propose to show that your work was successful?
d. What does each major item in your proposal cost (Total: $10,000 or less)?
e. How do you intend to use the results?
You should briefly describe the people you intend to study, and how you will find and recruit them. Remember ethical issues, such as institutional review.
Applications that facilitate additions to existing projects can be submitted. Your budget justification should address overlap with such funding
On a separate, initial sheet, give your date of birth; highest general and/or professional qualification; current professional position (academic, research or neither) or other information relevant to your proposed research; and up to not more than three of your OWN publications or presentations, if available. The main text should consist of not more than 1500 words or 6 double-spaced pages in 14pt type, in English (if the format is not followed the application will be disqualified).
The completed form should be submitted, preferably in pdf format, by e-mail, to Ms.Tatiana Gauchon: firstname.lastname@example.org
The deadline for submitting your applications is 31 December 2019.
The successful candidate is required to submit an interim summary of c.300-500 words within 3 months of ending the first year of work, and a full report within six months of ending the final (first or second) year. These narratives will be published in the Patient Reported Outcomes Newsletter.
Please submit your proposal to:
Tatiana Gauchon, Mapi Research Trust, 27, rue de la Villette, 69003 Lyon, France
Tel: +33 (0) 472 13 66 66 Fax: +33 (0) 472 13 66 82
List of Winning Projects:
“The Influence of Spirituality on Quality of Life and Pain in the Terminally Ill: An exploratory study of the patient perspective to develop an empirical model”
Colleen Nordstrom, PhD
Department of General Practice
University of Melbourne, Australia
Spirituality has recently become the subject of empirical health research. Although spirituality has long been recognized as a key component of palliative care, there remains little understanding of how terminally ill patients describe their spirituality and view its impact upon their quality of life and experience of pain. The purpose of this study is to determine how dying patients understand and define the term spirituality, in order to develop a model that offers both clinical and conceptual explanatory powers.
A cross-sectional design using semi-structured qualitative interviews will explore how individuals living with an advanced cancer diagnosis describe aspects of spirituality that influence their quality of life, in particular their management experience of pain. Theoretical and convenience sampling methods will be used to select participants with a primary diagnosis of cancer receiving either domiciliary or inpatient palliative care services. Sample size will be determined by theoretical saturation. First level of data analysis will involve a three-fold approach:
- individual narrative analysis;
- thematic analysis; and
- content analysis of the three key concepts: spirituality, quality of life, and pain.
The spiritual Needs Model of Palliative Care Patients, proposed by Kellehear, will be used to undertake the second order data analysis to enable patterns of spiritual need, quality of life, and pain to be captured. This dimensional approach to researching spirituality enables aspects of the construct to be identified that may compound physical pain. The significance of this research lies in the clinical contribution that may result in improved quality of life, and potentially decreased pain, by identifying aspects of spirituality that can be employed as therapeutic interventions.
“Missouri Telehospice Project”
Assistant professor of Health Informatics
University of Missouri
Columbia, MO 65211, USA
This study aims to measure the impact of videophone technology on the quality of hospice services, caregiver burden, patient satisfaction and cost of care. The goal of hospice care is to improve the quality of dying patients’ last days by offering comfort and dignity, focusing on palliation and the relief of suffering, individual control and autonomy. However, in many cases urban and rural patients approach end of life with limited or no access to hospice care.
Telemedicine, defined as the use of advanced telecommunication technologies to bridge geographic distance, has the potential to address some of the barriers to quality end of life care.
We propose a “telehospice” system based on the use of videophones that are portable, easy to use and can operate over regular phone lines as an enhancement tool for hospice care. We propose that patients in an intervention group receive traditional hospice care and additional “telehospice visits”, these will be compared to the traditional hospice patients that are not given the support of the videotechnology. The impact of the intervention on the following outcomes will be assessed: patient satisfaction, caregiver burden, crisis prevention rates and cost of care. Target sample size for the intervention group is 50 patients; another 50 patients will be assigned to a matched control group.
“Quality of Life Outcomes in Adults Living with HIV/AIDS at Late Stage”
Alex Hakuzimana , MD
Rwanda Quality of Life Centre
Kigali city, Rwanda
The increasing use of more effective antiretroviral drugs which control the progression of HIV infection, resulting in longer survival for HIV-infected patients has renewed the interest of scientists and clinicians on the quality of life of people living with HIV/AIDS.
Quality of life assessment is currently considered essential for clinical trials development as clinical and biological endpoints (CD4 level, viral load, opportunistic infections) are considered inadequate to catch the complexity of treatment outcomes.
Quality of life is defined as “an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns”.
The occurrence of symptoms (namely dyspnea, oral and abdominal pain, discomfort, malaise, weight loss, severe headache, anorexia, vomiting, dizziness, paresthesia, fatigue, weakness, cognitive problems and others) at late stage of the HIV infection, besides financial and family problems such as stigma, isolation, loss of income has an impact on the quality of life of HIV-infected persons.
More attention should be given for a better management of these symptoms in order to increase the adherence to antiretroviral therapy and to other drugs against opportunistic infections.
The general aim of this research is to study longitudinally the evolution of quality of life in advanced HIV-infected adults with regard to clinical variables.
This research aims particularly at evaluating psychometric properties of the WHOQOL-HIV BREF in Rwandan adult HIV-infected patients at the late stage, comparing clinical variables with quality of life dimensions at the four waves and identifying contributing factors in the improvement and/or worsening of quality of life in the patients at late stage of the HIV infection.
“Applying an Individualised Quality of Life Intervention to Advanced Cancer Patients Admitted to a Unit for Palliative Care and Symptom Control”
Michael Echteld , PhD
VU University Medical Centre
Institute for Research in Extramural Medicine
Department of Public and Occupational Health
Van der Boechorststraat 7
1081 BT Amsterdam, The Netherlands
The proposed intervention study aims to achieve optimal quality of life in patients admitted to a hospital-based unit for palliative care and symptom control. Results of this intervention will be disseminated to other care facilities for terminally ill patients and to international networks.
The intervention entails collection of patients’ life areas / domains that affect quality of life the most by a specially trained nurse. A semi-structured interview instrument for individual quality of life will be used. Using the thus obtained information, the nurse will determine together with the attending physician and the head of staff which areas may benefit from an intervention. Multidisciplinary interventions will then be applied to all these areas.
A pilot study showed that patients may benefit from a quality of life intervention: Quality of life levels were lower than terminal patients in other care settings, and standard care in the unit did not identify all areas important to patients’ quality of life.
Patients who are expected to be admitted for at least 7 days and who have no cognitive deficits will be selected. Individual quality of life will be measured using the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) at unit admission and at discharge / 14 days after admission. The effect of the interventions on individual quality of life will be assessed by comparing data from this study with data obtained in a pilot study.
“Development and evaluation of a decision aid for shared decision-making in patients with metastatic neuroendocrine tumours using decision analysis techniques. “
North Hampshire Hospital NHS trust, Basingstoke
& Honorary Registrar Kings College Hospital, United Kingdom
Shared decision making, is where patients and health professionals join in both the process of decision-making and ownership of the decision made. Patient involvement in decision-making increases adherence to treatment choices and improves satisfaction and the appropriateness of interventions. Decision aids do a better job than standard care in improving patient’s knowledge about options and create more realistic expectations. They enhance active participation in decision making, lower decisional conflict and decrease the proportion of people remaining undecided.
Neuroendocrine tumours (NET’s) originate from neuroendocrine cells and present with hypersecretory syndromes characterised by flushing, diarrhoea and wheezing. In patients with incurable tumour there are several treatment options with risks and benefits varying from patient to patient. Decision making here is extremely difficult necessitating constant up-to-date medical evidence. The analytical process needed for tailoring it to individual patient is complex. Patient involvement in such a process is all the more difficult.
Decision analysis is a process that offers an explicit and systematic approach to decision making. It has already been used in a variety of health care settings including breast and ovarian cancer.
We aim to develop a computerised decision aid which will offer a decision analysis based opinion/recommendation as to the optimal course of action for patients with incurable metastatic NET’s. We will use the decision aid to elicit patient preferences regarding the available treatment options. This will be synthesised using decision analysis techniques with the up-to-date medical evidence already loaded in the decision aid. The decision aid recommendation will thus form a platform for the shared decision-making.
“Testing Web-based Cultural Competence Training for Hospice Providers”
Ardith Z. Doorenbos, PhD
School of Nursing
University of Washington , Seattle, USA
The growing diversity within countries throughout the world compels a corresponding growth in culturally-congruent care to ensure optimal and equitable health care outcomes. During end of life, a time of heightened stress for patients and their families, cultural congruence is essential to quality care. Hospice providers are key points of contact with patients and families; thus improving hospice providers’ cultural competence is central to the health care system’s ability to provide access to and delivery of high-quality, high-value health care to patients of all cultures.
This project is a repeated-measures research study designed to evaluate the effect of a web-based cultural competence intervention on hospice providers’ cultural competence. The secondary goal for the study is to establish acceptability, feasibility, and potential effect size prior to a future longitudinal web-based cultural competence intervention for hospice providers. We will sample 60 providers from hospice agencies. The web based intervention; Culture & End of Life will be completed by study providers over a two month period. Providers’ cultural competence will be assessed using the Cultural Competence Assessment tool at baseline and after completion of the Culture & End of Life intervention. At present, traditionally underserved groups continue to be underrepresented in available hospice programs. Improvement in provider cultural competence can lead to more culturally congruent care, a needed element in ensuring that members of underserved groups have equal access to quality care.
“Nurse-Patient Dyads: Linking Nurse & Patient Characteristics to Outcome”
Lourdes Marie S. Tejero, PhD
College of Nursing
University of the Philippines
The patient’s sense of well-being, specifically that of the terminally ill, is facilitated through the interaction between nurse and patient. The nurse and patient are no longer separate entities during the interaction, but a dyad.
In this study, the different nurse-patient dyads that the investigator delineated in the preliminary studies will be incorporated in the Synergy Model developed by the American Association of Critical-Care Nurses.
In between the patient/nurse characteristics and outcomes of care, it is posited that the synergy is actualized in the nurse-patient dyad. The outcomes ensue not from the characteristics of the nurse and patient per se but from the nurse-patient interaction. The nurse-patient interaction as conceptualized in this study is an interplay of two factors, openness and engagement. By openness is meant the willingness of the individual to manifest his/her own self, her personal characteristics, to the other. Engagement on the other hand entails action, participation, involvement in the interaction. Therapeutic interactions are characterized by high openness and high engagement between the nurse and patient. If the interaction is therapeutic, then the desired outcomes will be realized.
The main goal of the study is to test the proposed theory asserting that the nurse-patient dyad mediates between nurse-patient characteristics and outcomes.
This research paper will be utilizing methods triangulation. Both quantitative and qualitative techniques will be employed to describe the phenomenon of the nurse-patient dyad. The research will be done in selected units of the Philippine General Hospital and in another tertiary hospital.
“To Live, to Love and to Leave a Legacy”
A photographic exhibition sharing the wisdom of the dying
Shyla Mills, RN, BN, MPallC
Director, Glass Half Full Projects and Palliative Care
Interdisciplinary Education Coordinator
South East Palliative Care, Kallista, Australia
The objective of this arts-based public health palliative care project is to normalize dying to communities around the world through the sharing of images and short narratives of palliative patients, their caregivers, and healthcare professionals from several countries.
The method used is to travel to numerous countries (both developed and developing), visit local palliative care teams, and speak with and photograph patients, their caregivers, and the staff about their experiences in living with or caring for someone with a palliative illness.
The result is a photographic exhibition with images of palliative patients, caregivers, nurses, doctors, and related health staff from hospices and palliative care facilities in India, Thailand, France, the UK, and Australia. The exhibition is aimed to appeal to the general public and healthcare professionals to promote conversations about palliative care and dying.
From March 2010-March 2011, funds from the Catherine Pouget award enabled the winner to take her existing exhibition (which included images from Australia, India, Thailand, France, and the UK) to several international palliative care conferences in both developed and developing countries and to expand the exhibition by collecting many more images and narratives. As of 2012, the exhibition includes over 80 pieces from ten countries, has been translated into three languages—French, Spanish, and Hindi—and receives frequent requests to be exhibited at international conferences and other public venues.
“Development of an Intervention to Improve Physician-Patient Communication in Patients with Advanced Cancer”
Koen Pardon, PhD
Ghent University & Vrije Universiteit Brussel, Belgium
Between 2007 and 2010, a large, longitudinal, multi-center study was conducted on (a) the preferences of advanced lung cancer patients for information; (b) their participation in medical decision-making; and (c) the degree to which these preferences were met from the patients’ point of view. The results showed that patients’ information and participation preferences were often not met. More specifically, a large number of patients who wanted information about their prognosis, their palliative care, and their involvement in end-of-life decisions were not being informed. Patients who wanted to make shared medical decisions with their physician often did not achieve this and were far less involved than they wanted to be.
This led to a new study through which these communication problems would be addressed with oncologists and to gather their suggestions for improvement. A secondary objective would be to develop a specific intervention that would improve physician-patient communication at the end of life and, more specifically, information-giving and patient participation in medical decision-making that would meet patients’ preferences.
The study will employ the focus group methodology. Three sessions with physicians treating seriously ill cancer patients will be held. This study will prove successful if useful recommendations and a useful intervention model are derived from the focus groups that enable a reduction of the existing communication problems and an improvement of the patients’ sense of well-being. To test this, we will present the recommendations and the intervention to the physicians who participated in the focus groups for their feedback.
“Use of Personal Ritual among Hospice Staff Following the Death of a Patient”
Lori P. Montross, PhD
San Diego Hospice and the Institute
for Palliative Medicine, San Diego, California, USA
After the death of those close to us we often feel the need to have a sacred ritual to honor their lives. To date, research has focused on family members’ use of rituals after the death of their loved ones, but little has been studied regarding hospice staff who can also be personally impacted by patients’ deaths. Hospice staff may experience greater levels of burnout and stress due to their daily or weekly experiences of loss. This study will examine the use of personally meaningful rituals as hospice staff and volunteers cope with the deaths of their patients. One innovation of this study will be that all hospice staff and volunteers will be invited to participate─from housekeepers, cafeteria workers, social workers, and chaplains to music therapists, nurses, office staff, and physicians. This inclusive design will offer a unique insight into the practices of all team members in their care of the dying.
Through an online survey, participants will be asked to describe their ritual practices, to elaborate on how they created them, and to express how these practices impact their work. Each participant will complete an online validated measure of their Professional Quality of Life (ProQoL), providing data about their level of compassion fatigue and compassion satisfaction. The 20 participants who rate highest in compassion satisfaction will then be given an in-depth qualitative interview.
The results should help new staff learn from more established staff, possibly leading to reduced frustration, isolation, or burnout as they cope with patients’ deaths. Administrators should gain new ideas for meaningful organizational practices, ones that enrich staff and their desire for positive patient remembrances. Finally, for the wider medical community, we believe this study could start a beneficial dialogue across medical professions, with the aim of showing how the use of personally meaningful rituals may bolster coping and compassion in one’s work.
“Reaching out/Reaching in: Exploring the impact of accessible video conferencing on the lives of those using a hospice for young adults”
Research co-ordinator at Helen and Douglas House Hospices, Oxford , UK
Douglas House was set up in 2004 as the first hospice specifically for young adults (16-35) with life-limiting conditions. Young adults (who we refer to as “guests”) come to Douglas House for planned respite stays (to give them and their families/carers a break), to help manage pain or other symptoms, to facilitate hospital discharge, in a family crisis and for end of life care. As an organisation, we have become increasingly aware of gaps between visits and how we can offer better ongoing support. In contrast to in-house stays, communication between visits tends to be initiated by staff rather than by guests, and to take place with family members rather than directly with the person themselves. Our dilemma is how to replicate the face-to-face and personal communication so valued by guests when they are not with us.This project will explore the potential value of accessible video conferencing to enable young people with life-limiting conditions to more easily and positively be in touch with hospice staff at Douglas House. The aim is to develop guests’ capacity to take control over the time and nature of contacts between stays, and so improve their quality of care and quality of life.A survey and trial carried out with guests last year confirmed the challenges of other forms of communication, and revealed enthusiasm for but lack of experience in videoconferencing.
In exploring the possibilities for video-based communication, Douglas House came across ‘CanConnect’, a modified form of Skype developed by the CanAssist team. Essentially, CanConnect makes video conferencing simpler and physically easier to manipulate, and so potentially accessible to those with both physical and learning disabilities.
Douglas House hopes to recruit 30 participants for this project, asking each to trial CanConnect/Skype for a six-month period and will collate statistical and qualitative data on their experiences. The project aims to measure changes to the quantity of communications, and to the quality of interactions to explore the success or otherwise of the project. Alongside our own measures and priorities, Douglas House acknowledges that enabling the use of accessible technology is likely to open up new and unanticipated avenues of communication and wishes to support and record these.
We received a number of inspiring proposals, and we finally settled on recognizing not one but two projects:
Winning project 1:
“Embracing Palliative Care right from the Learning Days”
A capacity building program for undergraduate medical and nursing students to
improve delivery of skilled and compassionate care to the terminally ill
This project was selected for its forward-looking nature and intention to fill a gap in the current curriculum of medical training in India. By highlighting the importance of proper palliative care training starting with the learning days, medical staff will be equipped with the proper tools to provide all aspects of end of life care
Dr. Ambika Rajvanshi
CEO of CanSupport
There exists a critical gap in the care of the terminally ill in India.
More than 70% cancer patients in India present with last-stage disease. These patients and those with other advanced life-limiting illnesses, now beyond medical cure, carry significant burdens of suffering with no access to help with relief from physical and emotional pains, distressing symptoms or crushing financial uncertainties. They are the disease’s untouchables, condemned to spend their last days in unremitting pain and despair. The family too, struggling with a multitude of personal and socioeconomic stresses, often falls apart.
Overwhelming physical and emotional burdens result in the poorest quality of life of patients followed by agonizing death and appalling bereavement adjustments in the family.
The end of a person’s life can be one of the most momentous time in their life; however, modern medicine doesn’t seem to have adequately valued the patient or family needs at this time. Although palliative care is included in undergraduate medical and nursing curricula in many western countries, in India, it has traditionally not had a high profile. Physicians and nurses have therefore not been sufficiently trained to be competent or confident in it. This may explain why health professionals often report feeling overwhelmed by needs that they are not equipped to meet due to lack of training in the areas of breaking bad news, controlling pain and symptoms or helping patients with difficult decisions. This also explains the poor quality of communication reported between them and the patients. It may also partly explain why people are often referred too late or not at all for palliative care.
Winning project 2:
“Improving the care of patients with terminal illness: Demelza Hospice Care for Children”
This project was selected for its attention to the most vulnerable members of society, terminally ill children. Providing them and their families with support is Demelza’s mission. The project outlined by Laura Smyth aims to fill the gap between current services offered by the charity, and support still needed but not voiced. Demelza’s help tends to be accepted as is by the families of terminally ill children, resulting in the organization not receiving true and honest comments on what may be lacking. The projects’ goal is to get precisely this much-needed feedback by organizing the distribution and analysis of surveys that will allow Demelza to understand what is missing and needs improvement to make their support and services even more relevant.
Senior Trusts Fundraiser at Demelza Hospice Care for Children
Right now, there are almost 50,000 children with serious and terminal conditions in the UK. And as more children live longer with their conditions, there is increasingly urgent need to support them and their families.
For every parent, the health and happiness of their children is the single most important thing in the world. But the reality is any child could be born with or develop a terminal condition.
Demelza provides specialist care and emotional support for children with terminal conditions and their loved ones, so they can enjoy their time together as a family, for as long as they have.
The unique support we give comes at a price, and at present we are only reaching 20% of the children that we could help and our organisational strategy aims to double the number of families we reach by 2021.