Sön 4 dec / År 40 / Nr 5 2022

Progress in research on how to provide quality of life during existential uncertainty

An unlimited and continuous access to well-organised and appropriate health care should be self-evident throughout all stages of life; from the very beginning, at the start of a new life, to the end where we need support and comfort at the final stages of life. At the Institute of Health and Care Sciences, University of Gothenburg, care is studied and evaluated through person- and family oriented perspectives encompassing diverse aspects along the human life span.

The Institute of Health and Care Sciences is part of the Sahlgrenska Academy and operates close to the clinical activities at the Sahlgrenska University Hospital in Gothenburg as well as primary health care and community care organisations. Three major research profiles have been identified at the institute; Symptoms, health and care, Significance of the environment for health and care and Learning and leadership in health care and education.

At the very beginning
Professor Marie Berg is studying the stages at the very beginning of life. “The aim of my research is to explain different aspects of care and experiences of care in order to support and strengthen the patient. This demands a holistic view of both the human being and the care”.
Her research can be divided in two main areas: Support in Childbirth, and Motherhood and Diabetes.
“Motherhood and Diabetes is concerned with the meaning of being pregnant, giving birth and becoming a mother including establishing key routines like breastfeeding. Pregnancy is tough for women who also have to struggle with the process of controlling blood glucose day and night. After childbirth, a vulnerable period starts when routines including a stable relationship and breastfeeding should be established simultaneously as the mother struggles with her own condition”.
Marie stresses the fact that during this period, the professional support is still very insufficient which has led to a subsequent study in which a web-based support is being developed for women with type 1 diabetes, supporting them in daily life.
The other research program, Support in Childbirth, includes several underlying projects. Marie Berg gives two examples of two projects. “In a Nordic collaboration we are defining a person-centered midwifery model of care in childbirth. In a European network we will define factors in optimal maternity care in different contexts in Europe and elsewhere defining what works for who and why.

Providing tools to gain quality of life
Professor Joakim Öhlén has expertise connected to the very last stages of life and the type of palliative and supportive care that is needed here.
“My interest was sparked to take things further in conducting an extensive study of how end-of-life care could be provided in accordance with patients’ needs and expectations”, Joakim explains.
”In current research, we are initially concerned with a person-oriented approach to the palliative care. We are trying to identify the most important parameters for providing the tools for patients to gain well-being even where an end-of-life situation has been predicted”.

Person-oriented care tailored to individual needs
How can we provide person-oriented care tailored to each individual’s specific needs in very complex situations such as within the palliative care? This is one of the questions that Joakim Öhlén and co-researchers seek answers to.
Joakim worked at the very first hospice established in Gothenburg, and it was also here that he reached the conclusion that providing the best possible end-of-life care is not something to take for granted; there is still a lot of work to be done in tailoring the palliative care to each patient’s needs across the health care organizations exercising palliative care.
“I think there is another important question that we must seek an answer to, and that is whether we truly use all the available resources to their full extent. It is my belief that there is still a lot of unexploited existing knowledge that we must uncover, and we are therefore in need of a deeper knowledge for organising palliative care, and for how to actually use the available evidence in practice and policy making. We know certain systems have been applied successfully, such as those adopting a family perspective involving the closest relatives of the patient. However, the current health care system in Sweden varies a lot in regard to how palliative care is organised ; there is still a lot more work to be done here”.

The next step: increasing knowledge for the future
Joakim Öhlén has in collaboration with associate professor Febe Friberg developed a model for patient information and communication in palliative care in order to meet their existential uncertainty over time. Patients seek knowledge from various sources, not only their health care providers, and their information needs partly unfold in dialogues and reflections. For this reason the model focus how to create space for communicative arenas in encounters between patients, their significant others and palliative care providers. The model is primarily concerned with providing means for better communication focusing on patients with advanced cancer.
The family aspect, increased knowledge and understanding are the most evident values throughout this new model for communication and patient education within palliative care.