Existential loneliness – a challenge in the care of frail older people, the LONE-study

Principal investigators (PIs): Anna-Karin Edberg, professor, Kristianstad University (KU) and Ingrid Bolmsjö, Professor emerita, Malmö University (MU).

Internal co-researchers at KU: Kerstin Blomqvist, associate professor, Ingela Beck, senior lecturer, and the doctoral students Marina Sjöberg, Malin Sundström and Helena Larsson.

External co-researchers: Margaretha Rämgård, senior researcher (MU), Ingalill R Hallberg, senior professor Lund University (LU) and Birgit H Rasmussen, professor (LU).

One of the major challenges for health care staff is to encounter older peoples' existential loneliness in the last phase of life. At the same time, severely ill and frail older people emphasizes the importance of having the possibility to talk to others about existential issues. We, today, have profound knowledge about that caring for people in the last phase of life is existentially demanding, as death and dying is constantly present. Earlier research has predominantly related existential loneliness to suffering, rather than a continuum that can be positive if properly acknowledged.

Existential loneliness is, however, a multifaceted concept that need to be clarified, and the aim of the study is thus to; 1) investigate the concept existential loneliness; how it is defined, demarcated and expressed, 2) explore how existential loneliness is experienced by frail older people and their significant others, and 3) explore how health care staff in different care contexts experience and encounter existential loneliness.

The data collection was completed during 2015-2016 and comprised of literature reviews as well as individual and focus group interviews with older people, their significant others and health care staff. This data will be the base of two licentiate theses 2018 (Marina Sjöberg and Helena Larsson) and be a part of one doctoral thesis 2020 (Malin Sundström).

In July 2017, two papers from the study has been published;

Sjöberg, M., Beck, I., Rasmussen, B.H. & Edberg, A-K. (2017). Being disconnected from life; meanings of existential loneliness as narrated by frail older people. Aging & Mental Health, published online. Doi: 10.1080/13607863.2017.1348481.

Larsson, H., Rämgård, M. & Bolmsjö, I. (2017). Older persons' existential loneliness, as interpreted by their significant others – an interview study. BMC Geriatrics, published online. Doi: 10.1186/s12877-017-0533-1.

Additionally three papers have been submitted for publication;

Edberg, A-K. & Bolmsjö, I. Study protocol; Exploring existential loneliness among frail older people. The development phase of the LONE study.

Sundström, M., Edberg, A-K, Rämgård, M. & Blomqvist, K. Encountering existential loneliness among older people: Perspectives of health care professionals.

Wijesiri, M., Edberg, A-K & Samarasinghe, K. A study on experiences of loneliness among older people living in care homes in Sri Lanka.

Three papers comprising (a) a theoretical analysis of the concept existential loneliness, (b) how older people handle existential loneliness, and (3) differences and similarities between older peoples experiences and their significant others perceptions of EE, are in manuscript and will be submitted for publication during 2017.

The study will be presented at the following international scientific conferences during 2017:

  • The 2017 European Conference in Nursing and Nursing Research, Malmö, Sweden, June 2017 (one poster).
  • The 21st IAGG World Congress of Gerontology and Geriatrics, San Fransisco, USA, July 2017 (three posters).
  • "Present and future Challenges and Opportunities for Ethics in Nursing and Care", 8th Nursing Ethics Conference, Leuven, Belgium, September 2017 (two oral presentations).

Besides financial support from the Research Platform for one doctoral student position for four years, the study is financed by external research grants from the Crafoord Foundation, Gyllenstiernska Krapperup Foundation, Kocks Foundation and a three year grant of 300 000 € from the Vårdal Foundation for the years 2015-2017.