Advanced palliative home care: next-of-kin's perspective

J Palliat Med. 2003 Oct;6(5):749-56. doi: 10.1089/109662103322515257.


Goals: (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size.

Subjects and methods: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed.

Main results: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings.

Conclusions: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers / psychology
  • Family / psychology*
  • Female
  • Home Care Services / organization & administration*
  • Humans
  • Male
  • Palliative Care / organization & administration*
  • Professional-Family Relations
  • Reproducibility of Results
  • Surveys and Questionnaires
  • Sweden