Geir Fagerjord Lorem

Intensive care nurses’ involvement in the end-of-life process – perspectives of relatives

In this article, we report findings from a qualitative study that explored how the relatives of intensive care unit patients experienced the nurses’ role and relationship with them in the end-of-life decision-making processes. In all, 27 relatives of 21 deceased patients were interviewed about their experiences in this challenging ethical issue. The findings reveal that despite bedside experiences of care, compassion and comfort, the nurses were perceived as vague and evasive in their communication, and the relatives missed a long-term perspective in the dialogue. Few experienced that nurses participated in meetings with doctors and relatives. The ethical consequences imply increased loneliness and uncertainty, and the experience that the relatives themselves have the responsibility of obtaining information and understanding their role in the decision-making process. The relatives therefore felt that the nurses could have been more involved in the process.

Medication and participation: A qualitative study of patient experiences with antipsychotic drugs

Patient autonomy is recognised within mental healthcare, although the capacity to participate in one’s own treatment planning is often reduced during a psychotic crisis. The patient may not be sufficiently competent to give consent or express preferences at the time treatment decisions are made. Nine participants were interviewed shortly after a crisis. We discussed participation in the treatment planning and recovery process with particular emphasis on interactions with professionals and understanding treatment. The participants recognised the need for drugs and mental healthcare but emphasised the need for better cooperation and communication. To facilitate the development of patient autonomy, we recommend an increased emphasis on providing information and participating in a dialogue about drug treatment options. This could counteract many of the negative experiences reported. The use of debriefing during hospitalisation and following coercion can be a practical tool for clarifying patient preferences and mutual understanding.

Family involvement in the end-of-life decisions of competent intensive care patients

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process.

Attuned understanding and psychotic suffering: A qualitative study of health-care professionals' experiences in communicating and interacting with patients

This study was initiated to examine how experiences with mental illness are perceived by health-care workers, and how insight affects assessment of their perspective and involvement. Lack of insight gives rise to problems concerning communication: if we expect what the person says and does not to have any meaning, how then can we establish a relationship based on understanding? This study was based on in-depth interviews with 11 mental health-care workers. Participants were recruited from a variety of institutions and professional backgrounds. The following topics were discussed with the participants: lack of insight, awareness of illness, and coping strategies, as well as how these factors affected treatment, cooperation, and participation. The participants describe attuned understanding as an other-oriented process, involving sensitivity to many aspects of the persons situation. Understanding is sought and is established through emotional, human contact, and practical interaction, and ends with new articulated understanding. The results suggest that the process described here can be viewed as other-oriented understanding, and not merely sympathy. It is an interdependent process of imagining oneself in the others place, and depends on awareness of the nature of this process and on sensitivity to the persons expressions.

Health Impact Index. Development and Validation of a Method for Classifying Comorbid Disease Measured against Self-Reported Health

The objective of this study was to develop a method of classifying comorbid conditions that accounts for both the severity and joint effects of the diseases. The Tromsø Study is a cohort study with a longitudinal design utilizing a survey approach with physical examinations in the Tromsø municipality from 1974 to 2008, where in total 40051 subjects participated. We used Tromsø 4 as reference population and the Norwegian Institute of Public Health (FHI) panel as validation population. Ordinal regression was used to assess the effect of comorbid disease on Self-Reported Health (SRH). The model is controlled for interaction between diseases, mental health, age, and gender. The health impact index estimated levels of SRH. The comparison of predicted and observed SRH showed no significant differences. Spearman’s correlation showed that increasing levels of comorbidity were related to lower levels of SRH (RS = -0.36, p <.001). The Charlson Comorbidity Index(CCI) was also associated with SRH (r = -.25, p <.001). When focusing on only individuals with a comorbid disease, the relation between SRH and the Health Impact Index (HII) was strengthened (r = -.42, p <.001), while the association between SRH and CCI was attenuated (r = -.14, p <.001). CCI was designed to control for comorbid conditions when survival/mortality is the outcome of interest but is inaccurate when the outcome is SRH. We conclude that HII should be used when SRH is not available, and well-being or quality of survival/life is the outcome of interest.

“The Lady in the Coffin” – Delusions and Hearing Voices A Narrative Performance of Insight

This article is based on a study of user participation and insight among 30 patients in community health centres in northern Norway. The living conditions of the patients have changed because of mental illness. Through a case study, we analyze the meaning of contexts in a meeting with Sverre, an older man, who was diagnosed with schizophrenia many years ago. One of the core features of schizophrenia is the patient’s lack of insight. Case studies have a valuable place in illness narratives, giving voice to suffering in a way different than the biomedical voice. Sverre’s narrative performance represents a different insight, which challenges the perception of everyday life in the clinic and our work with this patient group. By using a performative narrative perspective, the concept of insight emerges as a relational term and something that is developed in the dialogue, rather than through the static characteristics of the patient.

Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context

This articles point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the womens experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed.

Community treatment orders – what are the views of decision makers?

Abstract Background: Community treatment orders (CTOs) are being increasingly used in Western countries. The scheme implies that mental health patients can live outside a hospital, but still be subject to coercive care to ensure compliance with their treatment. There is limited knowledge of how the scheme is practised. Aims: To gain knowledge of how decision makers weigh and evaluate various considerations when making decisions on CTOs. Method: Qualitative in-depth interviews with decision makers responsible for CTOs in Norway. Results: Decision makers viewed CTOs as a useful scheme to ensure control, continuity and follow-up care in the treatment of outpatients with a history of poor treatment motivation. They had varied interest in and knowledge of the patient’s life situation and how the scheme affects the patient’s everyday life. Little attention was devoted to patient experiences of formal and informal coercion. Conclusion: When deciding on CTOs, decision makers should pay more attention to the negative consequences that patients may experience. In many cases, decision makers are probably not aware of these coercive factors.

Cancer survivors’ experiences of humour while navigating through challenging landscapes – a socio-narrative approach

AIM Humour is seen as a health-promoting coping strategy when dealing with life stress. The aim is to elucidate how adult cancer survivors experience and evaluate the significance of humour in daily life, from diagnosis through their entire illness trajectory, and to gain a broader understanding of humour as part of stress-coping processes during the experience of cancer as a life-threatening illness. METHOD A socio-narrative approach was chosen to study the humorous stories and their use in everyday contexts. Fourteen participants aged 23-83 with a variety of experiences across diagnoses, times since diagnosis, prognoses and life situations were interviewed. FINDINGS Participants described humour as helpful and utilised its capacity to deal with difficult situations or related distress, although fluctuations in the course of the illness coincided with two extremes: humour that disappeared and humour that returned. Their use of humour was related to three key themes: facing a life-threatening situation, togetherness and communication, and living with the situation. CONCLUSION Depending on the aim, humour contributes variously through the stress-coping process within the distinctions of emotion-, problem- and meaning-focused coping. Humour served to relieve the anxiety burden, enhance problem-solving ability, safeguard important relationships, communicate difficult topics, regain identity and help significant others to cope, even enabling the richness of life to help living with the risk. Humour should be considered as a significant engaging coping strategy by which the cancer survivors seek to manage their situation throughout the illness trajectory.

Teaching care and cooperation with relatives: video as a learning tool in mental health work.

Empathy is crucial for establishing caring relationships and cooperation with relatives of people with severe mental illness. This study describes the use of video as a learning tool in a post-bachelor program. A focus group of students attended a video session. Based on a phenomenological descriptive analysis, we found two major themes: (1) Insight and empathy and (2) Developing clinical competence. The first theme relates to increased insight into specific family situations, which resulted in new-found engagement and ideas for cooperation. The second theme relates to how this increased insight was crucial for re-evaluating ones own practice, attitudes, and limitations. This study indicates that the use of video develops sensitivity, attitudes, and empathy in a classroom setting. Enhanced general competence activates clinical knowledge through an improved awareness of relatives’ perspectives.