Hovering between Heaven and Hell: An Observational Study Focusing on the Interactions between One Woman with Schizophrenia, Dementia, and Challenging Behaviour and her Care Providers.

This case study aims to illuminate the interactions between one woman (Alice) with schizophrenia, dementia, and challenging behaviour and her professional caregivers. We performed participant observations of these interactions and conducted informal interviews at the residential home where the woman lived. The transcripts were subjected to qualitative content analysis. The results showed that the interactions between Alice and her caregivers were experienced as hovering between heaven and hell. Alice struggled to bring order into her chaotic life world by splitting herself and others, and her caregivers struggled to protect Alice's and their own dignity by limiting her challenging behaviours. They also strived to understand their own and Alice's behaviour. Current practice in caring for people with challenging behaviour usually focuses on symptom reduction through medication and behavioural modification. Instead, we suggest moving toward an understanding of the experiences behind the challenging behaviours and designing person-centred care based on each patients' reality.

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.

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.

Afraid of medical care school-aged children's narratives about medical fear.

Fear can be problematic for children who come into contact with medical care. This study aimed to illuminate the meaning of being afraid when in contact with medical care, as narrated by children 7-11 years old. Nine children participated in the study, which applied a phenomenological hermeneutic analysis methodology. The children experienced medical care as "being threatened by a monster," but the possibility of breaking this spell of fear was also mediated. The findings indicate the important role of being emotionally hurt in a child's fear to create, together with the child, an alternate narrative of overcoming this fear.

Narratives of children with chronic illness about being comforted.

The aim of the study was to examine how children with chronic illnesses narrate their experience of being comforted in hospital. During interviews, seven children, 4-10 years old described their experiences and made drawings. Thematic content analysis revealed following themes: being physically close to one's family, feeling safe and secure, staff being there for the children, and children being there for parents and siblings. Mother was identified as the most important comforter. The findings suggest that trusting in the staff's knowledge and professional skills is a prerequisite for children to feel "at home", and safe in hospital. Being close to one's family is even more important.

Injured road users' experience of care in the emergency department.

AIM: To describe the patients' perceptions of quality of care (QoC) in an emergency department (ED) and to analyse associations between patients' background characteristics and estimated QoC. BACKGROUND: Each year 1.4 out of every 100 inhabitants are injured in the traffic environment and receive care at the ED. No study has yet analysed different injured road users' perceived QoC, or how important they rate different caring dimensions. DESIGN: Cross-sectional study at the ED, in the University Hospital in Umeå, Sweden. METHOD: A stratified consecutive sample of 166 car occupants, 200 cyclists and 199 pedestrians, aged 18-70 years, all injured in the traffic environment. Data were collected from medical records and from a mail survey using a short form of the Quality from the Patient's Perspective questionnaire, modified for ED use. The statistical methods used included Mann-Whitney's U-test, the Kruskal-Wallis test and multiple logistic regression. RESULTS: The perceived QoC and the subjective importance of the corresponding QoC dimensions were rated at the 'better' half of the rating scale, with no differences between the different road user categories. The most prominent factors associated with a positive perceived QoC rating were a short waiting time, moderate or serious injuries and high age as well as high educational level of the injury victim. For the subjective importance, a short waiting time was rated as the most important but slight differences were seen, related to education and sex. CONCLUSION: The association patterns between the areas of perceived reality and subjective importance indicated that expectations were higher than perceived QoC, suggesting that patients expected somewhat higher QoC than they received. RELEVANCE TO CLINICAL PRACTICE: Information on factors causing long waiting times, adapted to patients' age, sex and educational level, may reduce dissatisfaction among long waiting patients, especially among those with minor injuries.

The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted to a residential home.

AIM: The aim of our study was to illuminate the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home. BACKGROUND: Living with dementia and so-called disturbing behaviour in an institution involves interaction with care providers and fellow residents and poses a challenge to all who are involved. METHODS: We asked the head nurses at a residential home to select persons with dementia and disturbing behaviour who were willing to be interviewed and able to communicate verbally. We performed 10 informal conversational interviews with three persons. The interviews were transcribed into text and interpreted using a phenomenological hermeneutic method inspired by Ricoeur's philosophy. RESULTS: The findings indicate that the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home, is about being surrounded by disorder, being trapped by restriction and being set aside, as well as about being included. The findings are interpreted as a collapse of relations to self and others intertwined with occasional episodes of togetherness. This is reflected on in relation to the literature on homelessness and at-homeness and loss and maintenance of personal and social selves. RELEVANCE TO CLINICAL PRACTICE: The view others have of the person with dementia and of disturbing behaviour determines the nursing care given. Taking the residents' personal history and actual context into account, disturbing behaviour may be seen as a way persons with dementia express their story and maintain their self.

Women's experiences of intense fear related to childbirth investigated in a Swedish qualitative study.

OBJECTIVES: To investigate and describe how intense fear related to childbirth is experienced, dealt with and communicated from the perspective of the women themselves. DESIGN: Qualitative interviews analysed by a grounded theory approach. SETTING: The study was conducted in a mid-sized city in the northern part of Sweden. PARTICIPANTS: A purposeful sample of 20 women, aged 24-41 with experiences of intense fear related to childbirth. FINDINGS: The experience of fear was described in relation to 'manifestations', 'time and fluctuation' and 'judgements according to perceptions of self and others'. Ways of dealing with the fears could be divided into the approaches of 'evading', 'processing' and 'seeking help'. These were often used in parallel and as exchangeable depending on which approach seemed to be most effective to a particular situation. Although some informants indicated that talking through their fears had helped them, all women underlined that talking about the fear was not an easy thing to do. 'Preconditions' for being able to disclose their fears often concerned the interest and behaviour of antenatal health-care professionals, and an understanding midwife was described as crucial. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The findings suggest that antenatal health-care professionals need further training in how to meet and support women with intense fear related to childbirth. Such training should include how to uncover and counter socially constructed norms and expectations about what pregnant women should feel in relation to childbirth.

Injured in traffic: experiences of care and rehabilitation.

A traffic injury can be traumatic from both physical and emotional points of view. Nine people injured in a traffic environment were interviewed 6 months after the incident in a qualitative study about their experiences of pre-hospital and hospital care and subsequent rehabilitation. The transcribed data were analysed using qualitative content analysis. Four themes emerged: (i) facing commotion, (ii) experiencing trust and security, (iii) lacking security and support, and (iv) struggling to return to everyday life. The main findings in the study indicate that the quality in the interaction between people injured in traffic events and their care providers are of utmost importance. Interaction must be seen as a dialectic process in which caregivers are open to the injured person's needs. An open-minded caregiver makes recovery easier for the injured.

Making up one's mind:--patients' experiences of calling an ambulance.

The issue of the inappropriate use of ambulance transport and care has mainly been studied from the professionals' and caregivers' perspective, with few studies focusing on the patient and his/her experiences. To further understand whether patients use ambulance care in an inappropriate manner and, if so, why, it is important to obtain an overall picture of the patients' existential situation at the time they call an ambulance. The aim of this study was to analyse and describe patients' experiences related to the decision to call an ambulance and the wait for it to arrive. The design was explorative, and twenty informants aged between 34 and 82 years were interviewed. Qualitative content analyses were performed. The findings showed that calling for an ambulance is a major decision that is preceded by hesitation and attempts to handle the situation by oneself. Our conclusion is that the definition of inappropriate use of valuable health care resources should not be based solely on the professionals' point of view but also take account of the patients' reactions when they experience a threat to their life and health.

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.

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.

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 Hegel's reasoning about the struggle between the master and the slave.

The meaning of being in ethically difficult care situations in paediatric care as narrated by female Registered Nurses.

Studies among physicians and nurses in paediatric care reveal experiences of loneliness and lack of open dialogue. The aim of this study was to illuminate the meaning of female Registered Nurses' lived experience of being in ethically difficult care situations in paediatric care. Twenty female Registered Nurses who had experienced being in ethically difficult care situations in paediatric care were interviewed as part of a comprehensive investigation into the narratives of male and female nurses and physicians about being in such situations. The transcribed interview texts were subjected to phenomenological-hermeneutic interpretation. The results showed that nurses appreciated social confirmation from their colleagues, patients and parents very much. This was a conditioned confirmation that was given when they performed the tasks expected from them. The nurses, however, felt that something was missing. They missed self-confirmation from their conscience. This gave them an identity problem. They were regarded as good care providers but at the same time, their conscience reminded them of not taking care of all the 'uninteresting' patients. This may be understood as ethics of memory where their conscience 'set them a test'. The emotional pain nurses felt was about remembering the children they overlooked, about bad conscience and lack of self-confirmation. Nurses felt lonely because of the lack of open dialogue about ethically difficulties, for example, between colleagues and about their feeling that the wrong things were prioritized in the clinics. In this study, problems arose when nurses complied with the unspoken rules and routines without discussing the ethical challenges in their caring culture. The rules and the routines of the caring culture represented structural barriers for creating open dialogue and an ethically justifiable practice, called inauthentic existence, blindness related to our own inauthentic understanding, which focuses on the routines, rules, theories and systems.

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.

Meaning of dependency on care as narrated by nurses.

This article is part of an ongoing study aimed at illuminating the meaning of dependency on care. The aim of this particular study is to illuminate the meaning of the phenomenon 'dependency on care' as narrated by nurses. Interviews with 20 nurses were conducted, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic approach was used to interpret the data. The meaning of dependency on care is revealed as laborious for both patients and nurses. The nurses' text discloses that for patients, dependency on care is a miserable loss of self-determination and self-worth. Nurses appear to be moved by dependents' difficult life and want to do whatever they can for the dependent. Dependency on care is a burdensome responsibility for nurses. For nurses dependency on care is revealed as evoking feelings of guilt and insufficiency and of being constantly concerned and worried. It is to struggle to be patient and understanding, having the arduous task of putting oneself into the dependent patients' shoes in order to cope with the demanding task of balancing between helping and not helping too much. The interpretation discloses, however, that nurses distinguish between easy and trying dependency on care. The understanding indicates that when they meet 'good' patients, nurses reappraise the situation, transform it into something new and meaningful, that is dependency on care is disclosed as 'easy to take'. When coming across'difficult' patients dependency on care is disclosed as trying. It seems that within the unique nurse-patient relationship patients may participate in such a way as to facilitate or inhibit nurses in finding meaning in the immediate caregiving situation. Nurses' evaluations of what constitutes a 'good' or a 'difficult' patient, respectively, seem to play an important role in distinguishing between dependency on care that is easy and that which is trying. The result is viewed through an existential paradigm and there is also reflection about what nurses perceive as valuable qualities in patients which might influence the quality of care.

'Understanding and being understood' as a creative caring phenomenon--in care of patients with stroke and aphasia.

Five care providers particularly successful at communicating with patients with communication difficulties were video-recorded together with three patients with aphasia after stroke, during morning care activities. The care providers were then interviewed immediately after the video-recordings, about their experiences of communicating with such patients. The interviews with the care providers were interpreted by means of a phenomenological hermeneutic method. Co-creating was the main theme found. Care providers invite the patient to participate in the creative act of communication. They have a communicative attitude and show interest in the patients' personal desires. The care providers encounter the patient as a presence in a caring communion. In part, care providers communicate by continuously conveying their presence to the patient and even creating availability in a close and open intersubjective relationship. A relaxed and supportive atmosphere facilitates reciprocity between care provider and patient. The communication is not technical or strategic; instead care providers share the patients' experiences in a silent dialogue. This silent dialogue involves sharing the patients' feelings and thus receiving messages from the patient.

Understanding between care providers and patients with stroke and aphasia: a phenomenological hermeneutic inquiry.

Understanding between care providers and patients with stroke and aphasia: a phenomenological hermeneutic inquiry The present study illuminates the understanding in communication between formal care providers and patients with stroke and aphasia. Five care providers and three such patients participated in the study. Video recordings were made during conversations about pictures (n = 15), and the care providers were also interviewed (n = 15) after the video-recorded conversations. A phenomenological hermeneutic method of interpretation of the interview text was used. The findings showed that a range of conditions for 'understanding and being understood' in the communication on the part of the care providers exists. These different conditions are: lacking both knowledge and understanding; having knowledge but not necessarily accompanied by understanding; and being in understanding. Within the condition 'being in understanding', the care providers create a feeling of at-homeness in a relaxed atmosphere and thus have the opportunity to be in 'understanding and being understood' together with the patient. The condition 'being in understanding' appears in connection with the care providers' creating of a 'calm liturgy of caring' by mediating humility and calm vitality affects to the patients, and further, when needed, being present on the level of mystery, i.e. caring communion.

Professional carers' struggle to be confirmed. Narratives within the care of the elderly and disabled.

Twenty-seven members of staff working in special types of housing in Sweden narrated 95 narratives about their experience of being in problematic situations during the working day. The narratives were interpreted using a phenomenological-hermeneutic approach inspired by the philosophy of Ricoeur. The narratives mainly concerned interactions with colleagues and very few narratives concerned interactions with residents and relatives. On the relationship level of communication there is evidence that many interactions among the staff, residents and relatives were of a receptive and disconfirming nature. The results indicate that the staff feel lonely, and struggled to maintain self-esteem and to be confirmed.