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The Palliative Care Research Group

Research group

Short description

The palliative care research group develops and strengthens research and knowledge translation in care, well-being and quality of life for both patients and their relatives in connection with progressing and life-threatening illness and end of life care. The research concerns specialized palliative care as well as palliative care integrated into other forms of healtcare regardless of medical diagnosis.

Palliative care is about relieving treatments and measures to enhance the quality of life of patients with severe, incurable diseases and their relatives. Palliative care can be integrated early in a disease course as well as in the absolute final stage of life.

Investigating palliative care is of great importance given the growing number of people living with the need for palliative care for a long time. The research group for palliative care and its collaborative partners want to make it possible to gather expertise and knowledge to enable coordination of research on palliative care in different care contexts. This includes instrument and methodological development needed for multicenter studies. The research group's close collaboration with clinics increases both the implementation of the research programme and the implementation of research results.

In-depth information about the research 

Palliative care has developed practically and theoretically over the past 50 years. Both in research and in clinical palliative care, the "person" has traditionally been the focus. The development in palliative care therefore provides opportunities to contribute to the development of the area of ​​person-centred care.

The research projects are carried out within most medical specialties in hospitals, institutions and in home conditions. In addition, projects are carried out in specialized palliative care. Several projects focus on palliative care early in the patient's course of disease.

Theoretical framework 

Important features of the view of the patient as a person in a palliative care context are the patient's identity, biography and relationships. Living with advanced illness, an increasingly failing body at the end of life, often includes practical and existential dimensions.

Methods 

Swedish palliative care research has been characterized by small-scale descriptive studies. Different types of design and methods are now applied including register studies. Several projects are investigating the implementation of palliative care and education in palliative care in professional education and the effects, outcomes and consequences of palliative care for patients, relatives and staff.

Challenges 

The science available on palliative care is not fully applied and there is therefore a need to develop new knowledge, especially for those groups that are not cared for in specialized palliative care units. Palliative care is unequal, which means that access to palliative care depends on age, gender, where the individual lives, is cared for and the medical diagnosis. Current research points to the importance of initiating palliative care earlier in the patient's course of disease and not only at the end of life. This means that more knowledge needs to be disseminated on how such integration can take place.

To meet these challenges, we pursue:

  • Research on interventions and implementation focusing on the outcome for patients and their relatives
  • Collaboration in interdisciplinary research groups and with international experts
  • Collaboration with various healthcare providers, care levels and network research that continuously develops our research programme.

Conceptual basis: Palliative Care Philosophy 

Palliative care has developed practically and theoretically during the last half century. An essential component in palliative care is that patients, significant others as well as professionals are conceptualized as persons. Essential features of the view of the patient as a person in palliative care context are the patient’s identity, biography and family. Living with advanced illness, such as a decaying and deteriorating body, at the end-of-life often encompasses practical, experiential and existential issues.

Decreased personal autonomy and increased dependency on others is apparent. As medical knowledge advances and opportunities to treat diseases increase, the period a patient need palliative care will extend and vary, from days to years. Transitions associated with this situation can be facilitated by proactive support related to disease progression, deterioration of the body, identity, grief and bereavement. Specific palliative interventions include care planning, decision-making support and coaching, symptom alleviation, facilitating timely communication and family empowerment.

Significance 

Investigating palliative care is of special significance given the approaching demographic changes in society with a larger amount of elderly people living with needs of palliative care over time. In order to contribute with significant knowledge, this group and its collaborative partners make possible to bring together expertise and resources to enable coordination of palliative care research across health care contexts. This includes instruments and methods required for comparisons and multicentre studies. The research group’s close collaboration with clinicians enhances implementation of both the research programme and research results.

Members

Research group leader
Professor Joakim Öhlén 

Affiliated professor
Richard Sawatzky 

Associate professors
Ingela Henoch
Elisabeth Kenne-Sarenmalm
Anneli Ozanne

PhD studentsHannan Hamdan Alshehri
Susanna Böling
Ramona Schenell
Emma Lundberg
Pernilla Ståhl
Klara Andersson 

 

Research projects

  • Quality of healthcare the last week of life- a register study
  • Implementation of palliative care in hospitals: Palliative care teams

  • Does education over the internet contribute to improved palliative care?

  • Nursing students' attitudes to caring for dying patients

  • Attitudes of specialist nursing students to care for dying patients

  • The 6 S - implementation and evaluation of Person-centered palliative care

  • Virtual teaching (serious game) in palliative care for nursing students -Thinking and Linking, ELC (End-of-life care)

  • Survival and disability in patients, and quality of life in patients and relatives after surgery of brain tumours: The importance of surgical radicalism and the body's own reaction to the tumour. A prospective and population-based study of patients with grade IV astrocytoma

  • A training intervention for healthcare professionals to provide improved existential support to patients with progressive neurological diseases - a controlled study

  • Maintaining self-determination in the palliative care phase in special accommodation - a model for promoting person-centered palliative care for the elderly

  • Are blogs a new way of communicating in healthcare?

  • Safer care for fragile elderly people with a focus on implementing the care chain process

  • Care process program for fragile elderly people