Supporting carers: health care professionals in need of system improvements and education - a qualitative study

Abstract

Background Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants’ experiences and opinions were investigated as part of this development process. Methods The aim of this qualitative study was to explore and describe health care professionals’ experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. Results In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals’ carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers’ needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. Conclusions Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.

Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports

“…For instance, evidence shows that palliative care education, in general, and palliative care nursing education, specifically, are paramount to ensure access to adequate palliative care, particularly in countries with populations living in rural and remote areas. 50,66–72 A possible explanation for within-country variations could be that some respondents, although identified as experts by their peers, were not well aware of the situation in their countries. Moreover, within-country variations mostly occurred in countries with larger number of respondents or having an administrative structure that permits the establishment of regional frameworks and regulation.…”

“…For instance, evidence shows that palliative care education, in general, and palliative care nursing education, specifically, are paramount to ensure access to adequate palliative care, particularly in countries with populations living in rural and remote areas. 50,[66][67][68][69][70][71][72] A possible explanation for within-country variations could be that some respondents, although identified as experts by their * Not in all European countries were respondents unanimous in their judgement of whether a certain level of education was available. The decision rule on how we dealt with unanimous information is provided above in the text.…”

An examination of home-based end-of-life care for cancer patients: a qualitative study

“…Thus, the family caregivers shouldered the lion’s share of the care responsibility. In addition, family caregivers may not receive adequate support since there seems to be limited extra support for patients staying at home and their families [26]. Both time and the caring activities themselves pose challenges to family caregivers.…”

Spiritual quality of life in family carers of patients with advanced cancer—a cross-sectional study

“…Whereas the bulk of social support is provided by family, friends, and neighbors [32], HCPs may also have significant contributions, including their own relationship to the carers [33,34]. Relationships may be regarded as spiritual support and meaning in itself [35] with lower social support could imply spending extra time, building a trustful relationship, and involvement of the interdisciplinary team.…”