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

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

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

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. Keywords: Health care professionals, Oncology, Palliative care, Family carers, Carer support, Needs assessment, Integratio

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. Keywords: Health care professionals, Oncology, Palliative care, Family carers, Carer support, Needs assessment, Integratio

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.acceptedVersion© 2018. This is the authors' accepted and refereed manuscript to the article. The final authenticated version is available online at: https://doi.org/10.1177/026921631877765

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

Purpose Caring affects carers’ psychological and physical health, mortality, and quality of life (QoL) negatively. Lower spiritual QoL is associated with anxiety and depression, but the spiritual dimension is rarely investigated in carers. The present study aimed to explore which patient- and carer-related characteristics were associated with spiritual QoL in carers of patients with advanced cancer. Methods Secondary analyses were conducted using data from a prospective study investigating integration between oncology and palliative care. Adult patients with advanced cancer and their carers were included, and baseline data considering demographics, clinical characteristics, symptoms, social support, and religious meaning-making were registered. Spiritual QoL was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp-12) questionnaire. Associations to spiritual QoL were explored by bivariate and multivariate regression models. Results In total, 84 carers were included, median age was 62.5 years, 52 (62%) were female, and the average spiritual QoL score was 23.3. In bivariate analyses, higher education, social support, and lower patients’ symptom burden were significantly associated with higher spiritual QoL. The multivariate regression model (n=77) had an explained variance (R2) = 0.34 and showed a significant association for social support, higher education, having children < 18 years living at home, and patient’s age. Conclusion The study indicates that spiritual QoL in carers were low and were negatively affected by several factors related to both carers and patients. However, there could be other important factors not yet described. Health care professionals should be aware of the known associated factors, as carers who hold these may need extra support