Our Research
The research questions guide the methods used and mainly use self-reported data collected through individual interviews, focus groups or questionnaires. The research group uses models and methods for instrument development, person centered care, physical activity, health literacy, quality of life and symptoms. The medical research models framework for complex interventions guides the intervention studies.
Ongoing Projects
PRISM - A psychosocial intervention for teens and young adults with cancer
This research project aims to develop a standardized psychosocial support program for teenagers and young adults (16-30 years) who recently have been diagnosed with cancer. The support program is called PRISM which stands for Promoting Resilience in Stress Management. It has been developed and tested at Seattles Childrens Hospital in USA. We have now, together with the developers and several young patients with cancer from the patient organisation Young Cancer, adapted PRISM to our Swedish context as well as to a digital format.
The program aims to strengthen a person's resources by increasing stress management, adapting the person's goals, dealing with negative thoughts and creating meaning. The intervention is done individually with a counselor or a psychotherapist. We are now pilot testing the Swedish version of PRISM and then also want to test it in a randomized study to see if it gives the effect as intended. The idea is that if the Swedish version of PRISM works it can be implemented in other hospitals in Sweden.
OptiTrain
This randomised controlled trial compares the effect of different physical exercise regimens on the physical and mental well-being in women with breast cancer during and after chemo- and hormonal therapy. In a sub-group of participants, mitochondrial biogenesis and function and other molecular processes in skeletal muscle biopsies are studied. In another sub-group, the side-effect profile of the anti-hormonal treatment is investigated. The women are randomly allocated into three arms, a control arm with usual care and two different training arms. In a sub-set of the participants muscle biopsies will be obtained. Some women will also be asked to participate in an interview about the experiences of training during treatment.
This study will contribute to increased knowledge about the type, intensity and frequency of training that patients with breast cancer benefit most from with regards to impact on physical and mental wellbeing. Above all, the study will increase the possibility for evidence-based exercise recommendations for women with breast cancer during and after active treatment.
Screening of Swedish Colons (SCREESCO) - Experiences from participants and non-participants
The aim with screening for colorectal cancer is to detect the disease in an early and treatable phase, before being symptomatic, to be able to reduce mortality. This research project entails a national randomized controlled screening program for colorectal cancer, where several outcomes are studied. Members from Hexi study experiences from participants and non-participants in the screening program. Data has been collected from focus group discussions, interviews and online questionnaires. Aspects under study include how the decision to participate or not is being made and to what extent knowledge, values and the involvement of others play a role. In addition, anxiety and health literacy are studied.
aCent - a model for person-centred care and support
allogenic hematopoietic stem cell transplantation person-centred systematic nurse-led support interventions
In an allogeneic stem cell transplant, a patient receives new stem cells from a donor. In haematological diseases, such as blood cancer, the goal is to cure the disease, but the treatment is demanding and the outcome is often uncertain. The time in hospital is often long and requires the patient to be isolated to avoid contracting infections. The treatment is often physically and mentally demanding, and the patient may experience physical, mental, social and existential symptoms and problems that in various ways require support. When the stem cells show early signs of white blood cell production, the patient is discharged to their home. The recovery takes time and the care continues with follow-up in outpatient care for a few months, to have longer intervals between visits over time, depending on the patient's recovery.
To enable the patient, and family members, to be prepared for different steps in the process of allogeneic stem cell transplantation and to be able to handle different situations in care, it is important that care and support are provided based on what they personally need. The purpose of the aCent research project is to develop and implement a model for person-centred systematic support interventions, as well as to evaluate how the model affects patients 'and family members' quality of life.
The model is developed from theories, previous research and clinical experience and includes studies that have already been done in the research projects PerCent and Hold on. The studies showed that patients experienced an improved dialogue with nurses when they used a specially developed conversation basis as a starting point for conversations, the patients also felt that they got a better structure for their symptoms and feelings. Similar results have also been shown in family members. The model includes systematically using specific communication tools as a starting point for conversations between patients and nurses, as well as family members and nurses to capture patients’ and family members' needs for support and patients' health. The model is developed in collaboration with former patients, family members and care staff in various workshops. Based on what emerges, a model is designed for nurse-led person-centred support interventions. As part of the model, all nurses will participate in a web-based education and workshops about the model, including person-centred care and the communication tools. Procedures for implementing the model will first be tested on a smaller scale in a Feasibility Study at two stem cell transplantation centres in Sweden - Stockholm and Lund. In the next step, the aCent model will be tested in a national quasi-experimental study, where aCent will be implemented at two centres and patients and family members from the other four centres in the country will be the control group.
If the study shows that the model improves the quality of life for patients and family members, it can hopefully be used at all clinics that perform stem cell transplants in Sweden.
The project is a collaboration between Karolinska University Hospital, Skåne University Hospital, Lund University, Linnaeus University, Ersta Sköndal Bräcke University College, Sophiahemmet University and Karolinska Institutet, with funding from the Swedish Blood Cancer Foundation and the Sjöberg Foundation.
Project manager is Carina Lundh Hagelin and the assistant project manager is Jeanette Winterling.
Work after Allogenic stemcelltransplantation (WaA)
Allogeneic stem cell transplantation is a demanding treatment performed with the intent to cure highly difficult hematological disease such as leukemia. The treatment that can cause many and difficult life-long side effects which affects opportunities to work after treatment. The overall purpose of this research project is to gain knowledge about sick leave and return to work among people who have undergone allogeneic stem cell transplantation, and to identify factors that affect sick leave and return to work. The project consists of a finalized cross-sectional study and an ongoing prospective single-center study where quantitative and qualitative data is collected for five years. The project will provide knowledge about the life and work situation of these people and how they can be better supported during the rehabilitation phase.