Research - Forskning
At the Institute for palliative care, our objective is to conduct research in all areas of palliative care and medicine.
We supervise post docs, graduate students and students in projects in palliative care. We participate in several studies in cooperation with other parties, national organisationes as well as international ones.
Short descriptions of our research projects
Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing Homes
Previous research indicates that when it comes to the final stage of life, the end includes unnecessary suffering. Palliative care has traditionally been provided successfully to younger persons dying from incurable illnesses while older people dying of multiple morbidities or “old age” has received far less of this type of care. One reason might be that it is more difficult to identify when the end of life begins for older persons.
The purpose of this project is to: A) Implement and evaluate how a knowledge-based model for palliative care in nursing homes affects the quality of life and the participation in the care process for older persons in nursing homes and their next of kin. B) Explore the staff’s implementation process of palliative care and the role of the leadership. C) To investigate which factors that affects the implementation process of this model.
The project is conducted as a cross-over implementation study in two counties based on education intervention through workshops and coaching sessions for professionals in nursing homes and the older persons next of kin. The main tailored intervention study is ongoing under 6 months in each county 2015-2016, based on previous pilot studies. Twenty nursing homes will be chosen to participate and an equal number of nursing homes will consist of the control group.
The project will be the first to implement the new national knowledge based documents on palliative care into practise.
Project members representing the Institute for Palliative Care: Birgit Rasmussen and Carl Johan Fürst
Project period: 2015-2017
A comparative qualitative study of patients´ experiences of lung and colorectal cancer diagnosis in England, Denmark and Sweden: Using patient narratives to inform health care delivery.
Survival rates for those with cancer varies between countries and in retrospective comparisons Sweden shows substantially better outcomes compared to both England and Denmark. Research suggest that this may be due to differences in how people recognise suspicious symptoms, report them to their doctors and how the doctors respond, and that these difference could lead to later diagnosis and a risk of later stage disease developing. This study aims to gather, explore and compare the diagnostic experiences of patients with lung and colorectal. Data will be gathered through interviews using the same protocol in the three participating countries. Comparative analysis within and across the European countries will be used and aims to develop hypotheses about which factors influencing patients´ behaviours and experiences related to the cancer trajectory. This study will add a new and important dimension to international cancer comparisons –that is an in-depth insight into patients ‘perspectives and experiences regarding their journey from the first symptom to diagnosis.
Project members representing the Institute for Palliative Care: Birgit Rasmusson, Marlene Malmström
Project period: 2014-2016
Translation and validation of IPOS
Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. The Integrated Palliative care Outcome Scale (IPOS) is one such measure, capturing clinically important physical, psychological, social, and existential aspects of patients’ palliative care needs. When patients are unable to complete the IPOS questionnaire themselves with or without assistance, a staff version is also available.The aim of the study is to translate and culturally adapt the IPOS Patient and Staff versions for use in the Swedish context.
Project members representing the Institute for Palliative Care: Ingela Beck, Sjuksköterska, Carl-Johan Fürst, Marlene Malmström, Ulrika Olsson Möller, Birgit Rasmussen.
Project period: 2015-2016
Optimizing rehabilitation following primary breast cancer surgery - Systematic screening as a tool for individualised rehabilitation
The majority of women undergoing surgery for primary breast cancer now survive their cancer. However, it has been shown that after treatment there is a large unmet need for support and rehabilitation, which negatively affects recovery. The need for rehabilitation varies significantly between individuals, and there is currently no evidence of how the need should be identified, and what rehabilitation should be put in place, resulting in inadequate rehabilitation, sub-optimal use of rehabilitation resources and an increased health-economic burden. The hypothesis underlying this project is that support- and rehabilitation resources are available within health care today. However, knowledge about how the patients’ needs should be identified and guidelines regarding how rehabilitation should be adapted to the specific individual, are still lacking. The project is designed as a complex intervention with the overall aim to develop and evaluate the effects of an intervention where systematic screening of patients’ psychological distress (measured with the distress thermometer) is used as an indicator for individualisation of rehabilitation following primary breast cancer surgery. This project aims to evaluate rehabilitation from different perspectives and therefore the RCT will be complemented by both individual interviews and focus groups interviews focusing on the patients, their relatives and the health care professionals experiences related to rehabilitation after primary breast cancer surgery.
Project members representing the Institute for Palliative Care: Marlene Malmström, Birgit Rasmusson, Ulrika Olsson Möller, Ingela Beck.
Project period: 2015-2018
Losing a parent to cancer as a teenager
The aim of this nationwide population-based study is to explore family cohesion as perceived by young adults that have faced a death of a parent, as teenagers (age 13 to 16), its effect on long–term health and wellbeing and possible association with support from health care. Hopefully the results will contribute to bridging the existing knowledge gap and furthermore give opportunity to better respond to the unmet needs of parentally bereaved children.
There is a great need to put more focus on health prevention within palliative care and according to the National board of health and welfare in Sweden (Socialstyrelsen) there is a shortage of formal support to children and their families after the loss of a parent. To be able to support bereaved children and adolescents in an efficient way, it is important to get a clearer picture on factors in their environment that affect their long–term health and wellbeing as well as to get more knowledge on their need for support.
Project members representing the Institute for Palliative Care: Dröfn Birgisdóttir.
Project period: 2014-2016