Struggling for a dignifying care: experiences of being next of kin to patients in home health care

Scand J Caring Sci. 2019 Jun;33(2):409-416. doi: 10.1111/scs.12638. Epub 2019 Jan 3.

Abstract

Background: Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn.

Aim: The aim of this study was to explore next of kin's views of dignity in home healthcare services.

Methods: This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016.

Results: Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost.

Conclusions: This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition.

Keywords: dignity; ethics; home care; informal caregiver; next of kin; qualitative analysis.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude of Health Personnel*
  • Caregivers / psychology*
  • Family / psychology*
  • Female
  • Focus Groups
  • Home Nursing / psychology*
  • Humans
  • Male
  • Middle Aged
  • Norway
  • Nurses, Community Health / psychology*
  • Qualitative Research
  • Respect*