Lilian Jansson

Striving for becoming at-home in the midst of dying.

Research interviews with 12 patients at an inpatient, free-standing hospice in Sweden were analyzed, using a phenomenological hermeneutic approach, to show the effects of individual nursing care as experienced by the guests. The findings revealed that the effects of, and reactions to, nursing care were inseparable from the hospice milieu and the patients’ situation, which was interpreted as including the prospect of becoming homeless. Thus, the effects of hospice spirit (nursing care and milieu) as experienced by these hospice patients represented the contrasting possibilities of hindering—or contributing to—the prospect of becoming homeless. What the patients spoke about was either a consoling or a desolating hospice spirit. A consoling hospice spirit supports experiences of wholeness and communion, i.e., becoming at-home in the midst of dying, while a desolating hospice spirit results in feelings of alienation and fragmentation, i.e., feeling homeless. Considering the dying person to be a guest rather than a patient is an important component of Swedish hospice philosophy and supports the view of the dying person as an autonomous and dignified human being.

Experienced nurses' narratives of their being in ethically difficult care situations. The problem to act in accordance with one's ethical reasoning and feelings.

In previous interviews, experienced nurses have reported that their decisions in ethical matters depended “on the situation at hand.” We interviewed 18 good, experienced cancer nurses to determine how they handled ethical decisions. They were asked to give an account of difficult situations that required ethical decisions to be made. The 60 narrated situations were interpreted step-by-step departing from the following two questions: What do nurses experience when being in ethically difficult care situations? What does the expression “it depends on the situation at hand how I act” mean? In complex situations, the nurses reported that the ethical situations that arose were regarded either as overwhelming or at the other end of the spectrum, as possible to grasp, and they expressed either loneliness or togetherness, respectively. When reporting overwhelming situations, the nurses mostly referred to themselves by using the word “one,” i.e., “one would” and used “they” when referring to their coactors. When narrating situations possible to grasp, they used the terms “I” and “we.” The most important situational factor that was revealed in these narratives was whether or not the nurses had a support group in which to share their thoughts. Without the support group, they reported difficulties acting in accordance with their ethical reasoning and feelings.

The Meaning of Skilled Care Providers’ Relationships with Stroke and Aphasia Patients

Little is known about the reciprocal influence of communication difficulties on the care relationship. To illuminate care providers’ lived experiences of relationships with stroke and aphasia patients, narrative interviews were conducted with providers particularly successful at communicating with patients. A phenomenological hermeneutic analysis of the narratives revealed three themes: Calling forth responsibility through fragility, restoring the patient’s dignity, and being in a state of understanding. The analysis disclosed caring with regard to the patient’s desire, which has its starting point in intersubjective relationship and interplay, in which nonverbal communication is essential—that is, open participation while meeting the patient as a presence. Thus, care providers prepare for deep fellowship, or communion, by being available. They described an equality with patients, interpreted as fraternity and reciprocity, that is a necessary element in presence as communion. The works of Marcel, Hegel, Stern, and Ricoeur provided the theoretical framework for the interpretation.

The experience of being ill as narrated by hospitalized children aged 7-10 years with short-term illness

Children’s illness has been investigated through the eyes of parents and nurses but the child’s own perspective has been largely ignored. The aim of this study is to illuminate the 7-10-year-olds’ experiences of being ill. Three girls and four boys were interviewed and narrated their experience about short-term illness. The data obtained was subjected to a thematic qualitative content analysis. The analysis suggests that the children combined reality and imagination and contrasts seemed to coexist such as being scared/confident, sad/cosy and hurt/having fun. They felt caught and tried to escape. The experience of illness as narrated by children can lead to a richer understanding and influence the way we care for paediatric patients.

Parental experiences of information within pediatric oncology

Parents of children with cancer use information to create knowledge about their child’s disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents’ experiences of acquiring and using information to create knowledge about their child’s cancer during the course of the illness. The authors used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: (a) feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one’s hopes supported, and getting relief from other families’ experiences; (b) feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents’ own needs.

Balancing between contradictions: the meaning of interaction with people suffering from dementia and "behavioral disturbances".

Interacting with people who suffer from dementia poses a challenge for care providers, and the presence of behavioral disturbances adds a further complication. Our article is based on the assumption that behavioral disturbances are meaningful expressions of experiences. Six narrative interviews were conducted with care providers with the aim of illuminating the meaning of interaction with people suffering from dementia and behavioral disturbances. The interviews were tape-recorded, transcribed into text, and interpreted using a phenomenological hermeneutic methodology. The findings indicate that interacting with people with dementia and behavioral disturbances, as narrated by care providers, means balancing between contradictions concerning meeting the person in my versus her/his world, feeling powerless versus capable, and feeling rejected versus accepted. Interaction involves being at various positions along these continua at different points in time. Furthermore, it means facing ethical dilemmas concerning doing good for the individual or the collective. This is interpreted as a dialectic process and is reflected on in light of Hegels reasoning about the struggle between the master and the slave.

Meaning of dependency on care as narrated by 10 patients

This article is part of an ongoing study that aims to illuminate the meaning of dependency on care. The aim of this particular study is to disclose the meaning of dependency on care as narrated by patients. We conducted interviews with patients (six men and four women) who had been in medical or surgical wards for at least 14 days. Seven of the patients were also interviewed one week after discharge. The participants ranged in age from 41 to 84 years old. The interviews were tape-recorded and transcribed verbatim. A phenomenological-hermeneutic approach was used to interpret the resulting text. The results show that to be dependent on care is to face the inevitability of not being able to manage by oneself—it is being attached to the nurses and bound to the care they offer. Being dependent on care involves a struggle to get care without treading on the nurses’ toes. The nurses are one’s lifelines and getting care is essential, no matter what. It is better to receive any form of care, good or bad, than to receive nothing. Being dependent on care is to be exposed and subjected to a nurse’s ability and benevolence. One comprehensive understanding of the meaning of dependency on care is simply that “one does not saw off the branch one is sitting on.” Furthermore, dependency on care involves a struggle to move forward in a life that hurts. Patients lose much of their freedom of choice in daily life and grieve their loss of ability and value. Patients may be able, however, to see things they would have never noticed earlier in life. Dependency on care is understood as one kind of “limit situation.” Patients who are dependent on care may reevaluate their potential in life and gain another perspective on life.

Being ill as narrated by children aged 11-18 years

Being ill from a child’s perspective has not been often investigated. The aim of this study was to illuminate the experience of being ill between the ages of 11-18 years. Four girls and one boy who were suffering short-term illness were interviewed and the data obtained subjected to qualitative content analysis. Illness disrupted their daily lives and made things unrecognizable. Being ill at the age of 11-18 seemed to imply being lost, hurt and in need of comfort from themselves and others. These narrations may indicate to health care professionals how they can improve their practice. This study suggests what is appreciated by children of this age when ill, namely being spoken to and informed about the illness and treatment. The children valued peace and quiet and wanted to listen to and adjust to their bodies.

Professional Caregivers’ Perceptions of Providing Information to Parents of Children With Cancer

Information has been described as a critical part of the care for parents of children with cancer, but not much is known about how caregivers makes decisions about informing parents. This study aims to illuminate professional caregivers’ perceptions of providing information to parents of children with cancer. Twenty caregivers at a Swedish pediatric oncology ward participated in four focus group interviews. The interviews were transcribed verbatim and subjected to qualitative content analysis. Two themes were found: Matching the amount of information to the parents’ needs concerned situations where the amount of information provided according to the caregivers’ assessment is deemed too small, appropriate, or too large. Navigating through a vague structure dealt with a disrupted setting, unclear responsibilities within the team, difficult timing, unintelligible information, and underused tools for communication. Implications for intervention development are discussed.

Parenthood as talked about in Swedish ante- and postnatal midwifery consultations. A qualitative study of 58 video-recorded consultations.

In order to explore the manner in which parenthood was discussed in midwifery consultations, 58 video-recorded consultations were analysed. A content analysis revealed a variety of topics concerning conversation on parenthood—topics of an intimate nature and discussions from a societal perspective. Parenthood was not of primary importance in visits, which were mostly directed by the midwives. A phenomenological hermeneutic analysis of the meaning of being a mother revealed a complex and difficult situation of being both needed and dependent. The meaning of being a father revealed a struggle between distancing from and closeness to the child. The mate relationship was indicated as important and under strain. The metaphor of the ‘spiders web’, where the mother is the spider with the child mostly on her back, the father entering the web on her terms, summarizes the understanding. The results from this study could provide a basis for reflection on the status of the topic of parenthood, on the meaning of being a mother and a father disclosed in the consultations, and ultimately on the organization of ante- and postnatal midwifery care.