Definition of health
We view health along a continuum, which includes both quality of life (QoL) and health-related quality of life (HRQoL). Symptoms can impact health and we believe good health to be the absence of these difficult to deal with, self-reported symptoms. To be able to live an independent and informed life is a prerequisite for health.
Research Group Leader
The research group study people’s risk for disease from a preventative perspective as well as during illness or injury. This includes exploring approaches to transitions on the illness – health continuum where knowledge, shared decision-making and self-care is studied.
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.
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.
PI: Carina Lundh Hagelin
Nurses in the allogeneic stem cell transplant settings have a unique opportunity through person-centered care to meet and support patients under and after transplantation. In this intervention focus will be limitation of the feeling uncertanity in person and increase the feeling of trust in their own capacity after serious illness. The general aim for this project is a nursing intervention by to Mitchell et al. (1998) and Radwin (2002) Refined Quality Health Outcomes Model. Our hypothesis is that through a person-centered approach and a systematically work according to the model and support from a PROM, nurses can reinforce the patient over the whole period of care. This approach can facilitate transition between the existential threats that the disease involves against an orientation towards a new view of health. The project will contain both qualitative and quantitative methods such as interviews, patient self-reporting symptoms using questionnaires, as well as the nurse way of working, to theoretically create an intervention model that will be tested and evaluated. The project in its entirety will generate knowledge about what effects and reduces the levels of patient insecurity about illness and health in patient, which may increase self-care, and how this affects readmissions and causes for contact with health care after allogen stem cell transplantation.
PI: Anki vonVogelsang
Time Trade-Off (TTO) is a widely used method to “quality adjust” life years in cost analyses, where respondents are asked to trade off between longevity and quality of life. In this study we investigate how respondents describe their willingness to trade off, or not trade off life years, when using a TTO question ten years after intracranial aneurysm rupture. The study has a mixed method approach where answers to the TTO question are analysed together with self-reported health-related quality of life data.
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.
Hold on - Support for family caregivers in allogeneic stem cell transplantation
Family caregivers as well as patients undergoing allogeneic stem cell transplant experience a changing life situation during and after the transplant which affects the health of family caregivers as well as their ability to support the patient. The overall purpose of this research project is to gain knowledge about family caregivers need for support and to develop and evaluate an individual structured support interventions prior to the onset of transplantation. The project consists of a descriptive prospective longitudinal cohort study for mapping family caregivers' experiences and needs as well as a quasi-experimental multicenter study to evaluate the developed intervention.
Carina Lundh Hagelin
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Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers.