Eva Sahlberg-Blom

Patient Participation in Decision Making at the End of Life as Seen by a Close Relative

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients’ opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient’s personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.

Being in the Patient Position: Experiences of Health Care Among People With Irritable Bowel Syndrome:

The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient’s lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient’s lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.

Being Me and Being Us in a Family Living Close to Death at Home

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or in other words, being a family, and dealing with impending death and a new “we-ness” as a group. “Striving for the optimal way of living close to death” was the core theme.

The last month of life: continuity, care site and place of death

A hospice ward was opened in 1991 at the Örebro Medical Centre Hospital (ÖMCH) in Sweden. Shortly afterwards, a research project was started, which aimed to describe different aspects of the final period of life of a group of cancer patients. This exploratory study is part of this project and aims to assess continuity in the site of care for a group of severely ill cancer patients during the final stages of their lives, and their place of death within different cultures of care. This prospective study involved 56 adults with cancer who had been admitted to six specialized departments at ÖMCH. Demographic and diagnostic data, documentation of when the patients changed from one care form to another, as well as place of death were obtained. The analysis of continuity in terms of care site involved care-oriented cultures (hospice ward, hospital-based home care, primary care-based home care and nursing home) and cure-oriented cultures (acute hospital wards). Considered as a group, the patients spent one-third of their time at home during their final month of life, with or without formal caregivers. For individual patients, however, there were great variations with regard to continuity of care site and care form. A pattern was found for the type of cancer the patients had and where they were during their final month. Ten patients died in their own homes, and of the 46 who died in an institution, approximately the same number died in a care-oriented culture as in a cure-oriented culture.

Learning about oneself through others: experiences of a group-based patient education programme about irritable bowel syndrome.

BACKGROUND People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms, health-promoting behaviours, coping and health-related quality of life, rather than peoples experiences. AIM To explore peoples experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness. METHODS Focus group interviews were performed with 31 persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee. FINDINGS The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as a whole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling and observing others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world. CONCLUSION The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledge-based decisions about what strategies to use in overcoming illness-related troubles.

Urinary incontinence : why refraining from treatment? A population based study

Objective To investigate why persons with urinary incontinence (UI) refrain from seeking care and treatment. Material and methods A population-based study was undertaken in which a public health survey and a specific UI questionnaire were sent to 15 360 randomly selected residents (age 18–79 years) of Örebro County, Sweden. For all persons reporting UI, the expressed wish for treatment or no treatment was analyzed in relation to relevant variables from both inquiry forms using binary logistic regression analysis. Results The response rate was 64.5%. UI was reported by 2194 persons, 1724 of whom comprised the study population. A statistically significant association was found between the degree of UI and a desire for treatment. Persons who did not experience daily leakage and those who did not perceive the leakage as troublesome or having an affect on their daily life mostly stated that they did not desire treatment. Socioeconomic or other health-related factors were not associated with desiring or not desiring treatment for UI. Conclusions Our results show that it is the perceived severity of UI that determines whether afflicted persons desire treatment or not. Other factors, relating to seeking healthcare in general, were not found to be of importance. Interventions to identify those in need of treatment for UI should primarily be directed towards those with severe symptoms.

Perceptions of Urinary Incontinence Among Syrian Christian Women Living in Sweden

Purpose: The purpose of this study was to describe the perception of urinary incontinence (UI) among Syrian women living in Sweden. Design: A qualitative, descriptive design with focus group discussions (FGDs) was used and analyzed with content analysis. Fourteen Syrian women were interviewed in three FGDs. Findings: Three categories emerged, “Thoughts on UI,” “Managing UI,” and “Communication With the Health Care System.” Among the interviewees, UI was a common, and expected, problem, which could be managed. However, some expressed shame and embarrassment. Some talked about communication problems with health care. Discussion and Implications for Practice: The health care system should be adjusted to the womens needs, with awareness of the communication difficulties, which could result in misunderstanding and neglected treatments.

The unpredictable death-The last year of life for patients with advanced COPD: Relatives' stories.

OBJECTIVE The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives. METHOD Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis. RESULT All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable. SIGNIFICANCE OF RESULTS The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Decision‐making process of prenatal screening described by pregnant women and their partners

Pregnant women are often faced with having to decide about prenatal screening for Downs syndrome. However, the decision to participate in or refrain from prenatal screening can be seen as an important decision not only for the pregnant woman but also for both the partners.

Four aspects of self-image close to death at home

Living close to death means an inevitable confrontation with ones own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze 12 interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants’ narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named “Inside and outside of me” and “Searching for togetherness,” represented the core of the self-image and were framed by the other themes, “My place in space” and “My death and my time.” Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death.