To Örebro University

Background: Pregnant women are often faced with having to decide about prenatal screening for Down’s 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.

Objective: The aim of this study was to explore the couples’ processes of decision making about prenatal screening.

Methods: A total of 37 semi-structured interviews conducted at two time points were analysed using the interpretive description.

Setting: The study was carried out in Maternal health-care centres,Örebro County Council, Sweden.

Participants: Fifteen couples of different ages and with different experiences of pregnancy and childbirth were interviewed.

Results: Three different patterns of decision making were identified. For the couples in The open and communicative decision-making process’, the process was straightforward and rational, and the couples discussed the decision with each other. ‘The closed and personal decision-making process’ showed an immediate and non-communicative decision making where the couples decided each for themselves. The couples showing ‘The searching and communicative decision-making process’ followed an arduous road in deciding whether to participate or not in prenatal screening and how to cope with the result.

Conclusions: The decision-making process was for some couples a fairly straightforward decision, while for others it was a more complex process that required a great deal of consideration.

Objective: A two-step model on information on prenatal screening consists of brief information at the first visit at the Maternal Health Care Centre and an offer of extended information at a separate visit. There is a lack of knowledge why some pregnant women and their partners refrain from the extended information visit. The aim of this study was to explore their reasons

Method: Eight qualitative interviews were analysed using Interpretive Description.

Results: In the first theme “From an individual view”, the interviewees saw the invitation from their own points of view. They refrained because they did not want to receive any more information or had taken an individual position against chromosomal testing. In the theme, “From a societal view”, the interviewees perceived the offer as part of a societal view on prenatal screening that they could not support.

Conclusion: The findings shows that these interviewees' reasons of declining an extended information visit are multidimensional and influenced by different views, from both an individual perspective and a more societal one. Health care professionals should be aware that some persons could have a different view on health care services and could be reluctant to accept offered services.

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.

Background: In Sweden, assistant nurses are the group of professionals who have a great deal of contact with older, dying persons in nursing homes. They have substantial experience in this area. It is therefore important that their voices are heard about their experience of how they identify that an older person is dying.

Aim: The purpose was to describe assistant nurses’ experiences of signs of dying among older people in nursing homes.

Method: A qualitative manifest content analysis was used. Four interviews were performed with eight experienced assistant nurses, individually or in groups, from two nursing homes.

Findings: The result is characterized by the assistant nurses’ descriptions of both subtle and manifest signs that an older person is dying. The analysis led to two categories: “the older person expresses insight” and “the older person’s body changes”. The first of these mainly involved observations of psychosocial changes, while the second mainly contained observations of bodily changes.

Conclusion: The clinical experiences as the assistant nurses achieve give valuable incitements for creating good palliative care. The assistant nurses must be seen as a significant part of the care team. They should be offered continuous education and support regarding palliative care in order to develop their skills and practical knowledge.

Objective The combined test for Down syndrome is offered to pregnant women. Qualitative studies have shown that the decision, whether or not to accept the test,is a rational one for most couples, although for some it may be difficult. Little is known about the couples’ satisfaction with the decision afterwards; the aim of this study was to extend that knowledge

Method Pregnant women and their partners were invited to fill out a questionnaire at approximately pregnancy week 20. The questionnaire, which covered aspects of their decision on prenatal testing, was based on the Decision Regret Scale, with additional questions

Results The response rate was 77% (295/359 women and 223/315 partners). The decision whether or not to participate in the combined test was seen as mutual by 95% of the women and 96% of the partners, and was perceived as uncomplicated by 93% of both women and partners. The decision was considered as difficult/very difficult by 6%. With a range of 93% – 99% women and partners were satisfied with their decision afterwards, but 1%–7% were not

Conclusion The majority of the participants were satisfied wither their decision. However, a small minority were not, which is important to recognize.

Background: Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals with chronic diseases. An intention for palliative care in Sweden is that all persons in the final stage of life, irrespective of age, domicile, diagnosis, and care place shall have access to palliative care on equal terms. One way to support these persons in final stage of life and their relatives is to offer sitting service.

Aims: To describe individuals who were identified and documented as being in a palliative phase in a Swedish municipality, with respect to demographics, use of a sitting service, continuity of care in the last month of life and the place of death. A second aim was to describe and compare the groups who received/did not receive sitting services related to the aforementioned variables.

Method: Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods.

Findings: Among individuals deceased during 2007, 51% were identified and documented as being in palliative phase. The majority was older people (mean 83 years) with a noncancer diagnosis (58%). Twenty-eight individuals (16%) had received a sitting service between 8 and 249 hours (one extreme value = 2211). It is indicated that sitting service significantly increased the possibility of dying at home (p = 0.00004), but did not affect how often the place of care changed during the last month of life.

Limitation: A small sample from a Swedish context must be considered.

Conclusion: These results can be related to an awareness in the municipality that led to adopting the concept of palliative care as not only for those with a cancer diagnosis.

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 people's experiences.

Aim: To explore people's 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.