title: Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers.
abstract: The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.
authors.affiliation: Faculty of Health Sciences, Palliative Research Unit and Division of Geriatrics, Linköping University, SE-581 85 Linköping, Sweden. anna.milberg@lio.se
authors.forename: Anna
authors.initials: A
authors.lastname: Milberg
authors.forename: Peter
authors.initials: P
authors.lastname: Strang
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D001293:Attitude to Death; D017028:Caregivers; D003191:Comprehensive Health Care / Q000458:organization & administration*; D005260:Female; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care; D011361:Professional Competence; D011369:Professional-Patient Relations; D012944:Social Support; D011795:Surveys and Questionnaires; D013561:Symbolism; D013727:Terminal Care