Reasons for declining extended information visit on prenatal screening among pregnant women and their partners.

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 analyzed 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 show 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.

"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.

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.

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 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.

Pregnant women's and their partners' perception of an information model on prenatal screening.

OBJECTIVE: Extended verbal information on prenatal screening was given when combined ultrasound and biochemistry screening test was offered at Örebro County Council, Sweden, in 2008. The aim of this study was to describe pregnant women's and her partners' perceptions of this information model. METHOD: The interviews were semi-structured, and altogether, 26 interviews were performed with pregnant women and partners. Qualitative content analysis was used to analyze the data. RESULTS: The result consists of two main categories, 'form and content' and 'managing the information', to describe the couples' perceptions of the information given. Nine categories describe the information model in: voluntariness, a separate visit, a special midwife, the content, missing information, ethical considerations, a visit on equal terms, communication within the couple, communication with other people, and emotional management. CONCLUSION: The information model helps expecting parents to focus on prenatal screening. Only information about prenatal screening and diagnosis was not enough for everybody; some couples want this to be an opportunity to discuss with a professional the pros and cons of prenatal screening as well as ethical considerations. The information visit gives the partner a chance to be involved and an opportunity for the couple to discuss the subject.

Identification and documentation of persons being in palliative phase regardless of age, diagnosis and places of care, and their use of a sitting service at the end of life.

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.

Maintaining power: women's experiences from labour onset before admittance to maternity ward.

BACKGROUND: In Sweden pregnant women are encouraged to remain at home until the active phase of labour. Recommendation is based on evidence, that women who seek care and are admitted in the latent phase of labour are subjected to more obstetric interventions and suffer more complications than women who remain at home until the active phase of labour. The aim of this study was to obtain a deeper understanding of how women, who remain at home until the active phase of labour, experience the period from labour onset until admission to labour ward. METHOD: Interviews were conducted with 19 women after they had given birth to their first child. A Constructivist Grounded theory method was used. FINDINGS: 'Maintaining power' was identified as the core category, explaining the women's experience of having enough power, when the labour started. Four related categories: 'to share the experience with another', 'to listen to the rhythm of the body', 'to distract oneself' and 'to be encased in a glass vessel', explained how the women coped and thereby maintained power. CONCLUSIONS: The first time mothers in this study, who managed to stay at home during the latent phase of labour, had a sense of power that was expressed as a driving force towards the birth, a bodily and mental strength and the right to decide over their own bodies. This implies that women who maintain power have the ability to make choices during the birth process. The professionals need to be sensitive, supportive and respectful to women's own preferences in the health-care encounter, to promote the existing power throughout the birthing process.

Shifting life rhythms: Couples' stories about living together when one spouse has advanced chronic obstructive pulmonary disease.

AIM: This study examines couples' experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD). METHOD: Repeated qualitative interviews with four couples over an eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomenological-hermeneutical method was used to interpret the interview text. FINDINGS: One main theme, "living with the disease and one's spouse in a new and changeable life rhythm", emerged from three subthemes: "living with uncertainty", "living in a changed intimate relationship", and "finding new ways of living together". A mutual sense of companionship between the spouses facilitated their chances of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease. CONCLUSION: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructuring their everyday life.

Four aspects of self-image close to death at home.

Living close to death means an inevitable confrontation with one's 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.

Struggling to retain living space: patients' stories about living with advanced chronic obstructive pulmonary disease.

AIM: This paper is a report of a study of the experience of living with advanced chronic obstructive pulmonary disease and long-term oxygen therapy when living alone. BACKGROUND: Chronic obstructive pulmonary disease affects an increasing number of people. Breathlessness, fatigue and dejection are common symptoms during the last years of life. METHOD: Repeated qualitative interviews with four participants were conducted over an 8-month period in 2008. The data comprised 17 interviews, 15 telephone conversations and various field notes. A phenomenological hermeneutical method was used to interpret the text. FINDINGS: The analysis resulted in two main themes and five sub-themes. The first main theme, Being subordinated to the sick body, implies that the body, assistive devices and entrusting oneself to the hands of others can both extend and restrict the living space. The second main theme, Protecting significant values of identity, encompasses both the struggle to maintain self-image and the awareness of one's own death. CONCLUSION: Living alone with advanced chronic obstructive pulmonary disease is a challenging and complex phenomenon. The everyday life was characterized by a struggle to keep autonomy during a time of increasing dependency and need for help. A person-centred nursing care, built upon peoples' own experiences, may be one way to promote identity and dignity in patients even when they are close to death.

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.

Learning to live with irritabel bowel syndrome. The influence of a group-based patient education programme on peoples' ability to manage illness in everyday life.

BACKGROUND: Living with chronic irritable bowel syndrome sets limitations in peoples' everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness-related troubles, and they perceive themselves to be insufficiently informed about the disease. AIM: To evaluate the influence of a group-based patient education programme about irritable bowel syndrome, on people's ability to manage their illness in everyday life. METHODS: The study used an evaluative research design. Fifty-one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group-based patient education programme. RESULTS: In the participants' self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape-avoidance. Distancing was used more often after the education programme, while escape-avoidance, was used more seldom. The proportional use of the strategy self-controlling (relative score) was enhanced after the education programme. The participants' overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease ≤ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity. CONCLUSION: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples' everyday lives as a whole.

The modified self: family caregivers' experiences of caring for a dying family member at home.

AIM: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background. Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image. DESIGN: Qualitative descriptive study. METHODS: Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description. Result. Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space. CONCLUSIONS: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. RELEVANCE TO CLINICAL PRACTICE: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

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.

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: The health care system should be adjusted to the women's needs, with awareness of the communication difficulties, which could result in misunderstanding and neglected treatments.

Accepting and adjusting: older women's experiences of living with urinary incontinence.

PURPOSE: The aim of this study was to describe experiences of living with urinary incontinence (UI) among persons who do not desire further assessment and treatment. METHODS: This was a qualitative, descriptive interview study, and the method was phenomenological. Eleven women were interviewed; all had been in contact with a district nurse to obtain a prescription for sanitary protection. None of the women desired further treatment for UI. FINDINGS: The women described living with UI as a manageable problem with which they had learned to live. They showed strength and desire to manage on their own. In many cases, other health problems overshadowed leakage problems. Several women saw health care services as a barrier that needed to be overcome before help could be obtained. Three key constituents emerged in the analysis: "learning to live with it despite difficulties," "other illnesses are more important," and "reluctance to seek care." For these women, the essence of the phenomenon of living with urinary incontinence (UI) can described as "a situation to accept and adjust to."

Closeness and distance: a way of handling difficult situations in daily care.

AIMS AND OBJECTIVES: The aim of this study was to describe how care team members caring for patients with advanced cancer describe how they handle difficult situations in daily care. In this paper 'difficult situations' refers to those situations team members themselves describe as difficult. BACKGROUND: Serious illness and impending death involve great changes in a person's life. The care of patients with advanced cancer is complex and many different factors influence each care situation. This places demands on the way care team members handle problems and difficulties in daily care. DESIGN: Qualitative descriptive study. METHODS: The study is based on 16 focus group discussions with care team members who were caring for patients with advanced cancer at three different care units in two Swedish cities. The focus group discussions included 77 participants. The procedure for data analysis was inspired by the phenomenological method. FINDINGS: The results show that care team members handled difficult situations by balancing between being close and distancing themselves. In most situations their choice of strategy seemed spontaneous rather than being a conscious decision, although it was sometimes described as a more conscious approach. Variations of closeness and distance that were identified were Identity, Meaning, Limit-setting and touching, Prioritization, the Team and the Organization. These could also be seen as tools that could facilitate or impede the use of closeness and distance. CONCLUSIONS: The results show that care team members have a need to reflect over daily care and to become aware of what governs different care actions. RELEVANCE TO CLINICAL PRACTICE: If the experienced difficult situation is not handled in a way that is beneficial to the care team member, patient and relatives, it is assumed that this can result in stress, burnout and, above all, non-optimal care.

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 Orebro 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.

Complexity in caring for patients with advanced cancer.

BACKGROUND: The gap between nursing research and practice is readily acknowledged in literature, with a variety of strategies suggested for reducing this gap. It is necessary not only to address problems of research implementation in practice, but also to find strategies that strengthen the influence of practitioners on research agendas through more collaborative relationships in order to have an impact on care of patients. A multi-centre research project was therefore initiated by two universities and three health care facilities, aiming to improve quality of care for patients with advanced cancer through a knowledge-exchange programme between nurse researchers, practitioners and students. AIM: The aim of this article is to explore how clinical staff reason about care provision for patients with advanced cancer, through analysis of 20 focus group discussions conducted with staff in three different health care facilities in two Swedish cities. An initial analysis based on grounded theory was complemented with consideration of the interactive process in the focus group discussions, and carried out by a team consisting of senior nurse researchers, clinical experts and nursing instructors. FINDINGS: The findings of the focus group discussions emphasize the complexity of caregiving for patients with advanced cancer. The tension between caregiving ideals and limits imposed by the realities of caregiving in today's health system were striking. Practitioners discussed the organization of care, different constellations of relationships between patients, family members and professionals, and theoretical and experiential knowledge as equally important aspects in dealing with all concrete situations in daily practice. The importance of reflective practice, use of self and ethical reasoning also permeated the focus group discussions. CONCLUSIONS: These findings highlight an integrated need both to influence organizational structures and working relationships, along with increasing knowledge, if sustainable change is to be effected.