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.

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.

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.

Embodied meaning-making in the experiences and behaviours of persons with dementia.

BACKGROUND: The aim of the study was to explore and articulate how meaning-making appears and how meaningfulness is experienced in persons with severe dementia. Although there is little knowledge about meaning-making and experience of meaningfulness for this group, this article assumes that persons with dementia are as much in need of meaningfulness in life as any others, and hence, that they are involved in the process of meaning-making. METHODS: The study was conducted using a qualitative method with exploratory design. Ten patients with severe dementia at a specialized dementia ward at an old age psychiatric department in hospital were observed through participant observation performed over four months. The field-notes from the observation contained narratives carrying with them a dimension of meaning played out in an everyday setting and thus named Meaning-making dramas. The narratives were analyzed looking for expressions where experiences of meaning-making and meaningfulness could be identified. RESULTS: The narratives demonstrate that persons with severe dementia are involved in processes of meaning-making. The narratives include expressions of meaning-making, and of interactions that include apparent crises of meaning, but also transitions into what may be interpreted as meaningfulness based on experiences of significance, orientation and belonging. The role of the body and the senses has proved significant in these processes. The findings also suggest that experiences of meaning contribute to experience of personhood. CONCLUSIONS: The relevance to clinical practice indicates that working from a person-centred approach in dementia care also includes paying attention to the dimension of meaning. This dimension is important both for the person living with dementia and for the people caring for them. Acknowledging meaning as a central human concern, it is crucial to seek understanding and knowledge about the significance of meaning in vulnerable groups such as persons with dementia.

Meaning in Life for Patients With Severe Dementia: A Qualitative Study of Healthcare Professionals' Interpretations.

The need for meaning in life is a key aspect of being human, and a central issue in the psychology of religion. Understanding experience of meaning for persons with severe dementia is challenging due to the impairments associated with the illness. Despite these challenges, this article argues that meaning in life is as important for a person with severe dementia as it is for everyone else. This study was conducted in a Norwegian hospital and nursing home context and was part of a research project on meaning in life for persons with severe dementia. The study builds on two other studies which focused on how meaning-making and experience of meaningfulness appeared in patients with severe dementia. By presenting the findings from these two studies for a group of healthcare professionals and introducing them to research on meaning in life, the aim of this study was to explore how healthcare professionals interpret the patients' experience of meaning in life in practise for patients with severe dementia in a hospital and nursing home context, and to highlight its clinical implications. The study was conducted using a qualitative method with exploratory design. The data were collected at a round table conference, a method inspired by a mode of action research called "co-operative inquiry." Altogether 27 professional healthcarers, from a variety of professions, with high competence in dementia care participated together with six researchers authoring this article. This study revealed that healthcare professionals were constantly dealing with different forms of meaning in their everyday care for people with dementia. The findings also showed clear connexions between understanding of meaning and fundamental aspects of good dementia care. Meaning corresponded well with the principles of person-centred care, and this compatibility allowed the healthcare professionals to associate meaning in life as a perspective into their work without having much prior knowledge or being familiar with the use of this perspective. The study points out that awareness of meaning in life as an integrated perspective in clinical practise will contribute to a broader and enhanced repertoire, and hence to improved dementia care. Facilitating experience of meaning calls for increased resources in personnel and competence in future dementia care.

[Memorial services after major accidents]. / Minnegudstjeneste etter større ulykker.

BACKGROUND: Memorial services in the acute phase after major accidents have been common in Norway since the late 1980ies. We have examined such services from the aspect of liturgy, rite and as help to cope in a crisis. This paper focuses mainly on the last item: What importance does the memorial service have for the participants? MATERIAL AND METHOD: We have interviewed nine bereaved and one rescuer who were involved in four accidents and participated in memorial services thereafter. Transcriptions of the interviews were coded in accordance with inductive code categories and were reorganized in a thematic structure that formed a basis for further analyses. RESULTS: For the bereaved, the situation was characterized by strong emotions and impressions. Some reported a great need to participate in the service; others were ambivalent due to emotional exhaustion and existential distress. Lighting candles and reading names created the strongest memories and were emphasized as important for handling the crisis. The participants experienced the church room as appropriate to enfold their emotions. The rituals helped to confirm reality and release grief, and they helped them to cope with emotional and existential aspects. INTERPRETATION: A memorial service is not therapy as such, but can be understood as a collective ritual response to an extensive crisis experience. Those who participate would also engage in rituals to deal with other emotionally and existentially challenging situations (i.e. funerals). Participation in the service seemed to reduce feelings of helplessness; it connected the individual to the community and contributed to create order in a chaotic situation.