Navigating an unfamiliar world - Parents' experiences of having a child with post COVID-19.

BACKGROUND: Post COVID-19 diagnosis in children has been difficult as there has been a lack of knowledge within the healthcare system, leading to uncertainty concerning how these children should be assessed and treated. To understand the aspects of how parents experience seeking care for their child with an array of symptoms and how the child's symptoms affect their everyday life and family situation, we need to listen to the parents' stories about having a child living with post COVID-19. PURPOSE: To describe parents' experiences of seeking professional care for their child with post COVID-19 symptoms and what kinds of impacts there are on their children's daily life. DESIGN AND METHODS: A qualitative study with an inductive and exploratory approach including seventeen parents of children with post COVID-19. Face-to-face interviews were conducted between October 2022 and March 2023 and analyzed with thematic analysis. RESULTS: The findings describe how the parents' constant struggle for their child and how the child's symptoms affect their daily life and their family situation in three themes: Navigating the unknown, Navigating life with post COVID-19, and Navigating between fear and hope for an uncertain future. CONCLUSIONS: This study corroborates the parents' struggle for acceptance of the children's problems in the health system. PRACTICE IMPLICATIONS: It is important that health care focuses on the everyday world and the problems that the child and parents express to understand the family's perspective and the problems that arise in everyday life.

Experience of internet-delivered cognitive behavioural therapy among patients with non-cardiac chest pain.

AIMS AND OBJECTIVE: To explore the experiences of patients with non-cardiac chest pain and cardiac anxiety regarding participation in an internet-delivered cognitive behavioural therapy program. BACKGROUND: Non-cardiac chest pain is common and leads to cardiac anxiety. Internet-delivered cognitive behavioural therapy may be a possible option to decrease cardiac anxiety in these patients. We have recently evaluated the effect of an internet-delivered cognitive behavioural therapy program on cardiac anxiety. DESIGN: An inductive qualitative study using content analysis and the COREQ checklist. METHODS: Semi-structured interviews with 16 Swedish patients, who had participated in the internet-delivered cognitive behavioural therapy program. RESULTS: Three categories were found. The first, 'Driving factors for participation in the internet-delivered cognitive behavioural therapy program' described the impact of pain on their lives and struggle that led them to participating in the program. The second, 'The program as a catalyst' described that the program was helpful, trustworthy and useful and the last category, 'Learning to live with chest pain' described the program as a tool for gaining the strength and skills to live a normal life despite chest pain. CONCLUSIONS: The program was experienced as an opportunity to return to a normal life. The program was perceived as helpful, trustworthy and useful, which helped the participants challenge their fear of chest pain and death, and gain strength and new insights into their ability to live a normal life. RELEVANCE TO CLINICAL PRACTICE: A tailored internet-delivered cognitive behavioural therapy program delivered by a nurse therapist with clinical experience of the patient group is important to improve cardiac anxiety. PATIENT OR PUBLIC CONTRIBUTION: Patients or the general public were not involved in the design, analysis or interpretation of the data of this study, but two patients with experience of non-cardiac chest pain were involved in the development of the pilot study. TRIAL REGISTRATION: ClinicalTrials.gov NCT03336112; https://www. CLINICALTRIALS: gov/ct2/show/NCT03336112.

Everyday life with childhood functional constipation: A qualitative phenomenological study of parents' experiences.

Childhood functional constipation (FC) is a worldwide problem with treatment regiments affecting everyday life. AIM: To explore parents´ experiences of living with a child with FC and its impact on everyday family life. METHOD: A qualitative phenomenological interview study using a reflective lifeworld research approach. Interviews with 15 parents of otherwise healthy children aged 1-14 years affected by FC. FINDINGS: Shame is the driving force making parents put everyday life on hold. The quest for control, self-imposed loneliness, guilt, inadequacy, and frustrating battles become essential parts of everyday life to protect it from FC-related shame. CONCLUSION: FC has as great an impact on everyday life as any childhood illness. Every part of family life is affected by FC. Continuously family support and guidance are needed. PRACTICE IMPLICATIONS: Healthcare professionals need to take FC more seriously, listen to the parents and try to understand their experiences of everyday life to enable custom made care plans with the family-unit in focus. Care with clinical sensitivity might help parents deal with the attendant shame and stigmatization that stem from illness beliefs about FC.

The meaning of significant encounters in forensic care.

BACKGROUND: Research in forensic psychiatric care focusing on person-oriented care is ambiguous about matters of quality. The encounters between a healthcare professional (HCP) and patient could influence how connections and relations emerge between the caregiver and the patient. OBJECTIVES: To better understand caring aspects, this study explores significant encounters in forensic psychiatric care from the perspective of HCPs. METHOD: This study is based on 34 written narratives from HCPs from two forensic psychiatric hospitals in Sweden. The narratives concern significant encounters with a patient. These narratives were analysed according to methodologies developed by phenomenological and reflective lifeworld research. FINDINGS: The essence of a significant encounter is a temporal extended phenomenon that both precedes as well as is a consequence of the actual encounter as it occurs. The encounter is unforeseeable and being open to an encounter also means to be vulnerable as it is not predetermined how someone will respond. The significant encounter is an act of sharing, and HCPs may come to understand more about their patients as well as about themselves. Moreover, these encounters seem to create repercussions and hope for the future care. CONCLUSIONS: The everyday activities of forensic psychiatric care are not trivial activities. Rather, they are important aspects of health care as these everyday encounters can deepen the relationship between the HCPs and their patients and help both the HCPs and their patients develop a sense of hope for the future.

Experiences of parents who give pharmacological treatment to children with functional constipation at home.

AIM: The aim was to explore the lived experiences of parents who give oral and rectal pharmacological treatment to their children with functional constipation at home. DESIGN: A phenomenological design with a reflective lifeworld research approach that describes phenomena as they are experienced by individuals. METHODS: From January-May 2019, 15 interviews were conducted with parents of children with functional constipation with home-based oral and rectal treatment. Parents were recruited from three different healthcare levels. Open-ended questions were used starting from the description of a normal day with constipation treatment. Analyses were made with an open and reflective 'bridling' attitude. FINDINGS: Constipation treatment causes parents to question their parental identity and what it means to be a good parent. Forced treatment makes them feel abusive and acting against their will as parents. There is a conflict between doubt and second thoughts about the treatment, the urge to treat based on the child's needs and encouragement from healthcare professionals to give treatment. CONCLUSION: As pharmacological constipation treatment can be experienced as challenging, it is important to help parents make an informed decision about how such treatment should be carried out at home. The findings reveal a medical treatment situation where parents hesitate and children resist, resulting in insecure parents who question their parental identity. IMPACT: The findings point to the importance of supporting parents in treatment situations. Healthcare providers need to treat children with constipation with greater focus and more prompt management to prevent these families from lingering longer than necessary in the healthcare system.

Should the PBL tutor be present? A cross-sectional study of group effectiveness in synchronous and asynchronous settings.

BACKGROUND: The tutorial group and its dynamics are a cornerstone of problem-based learning (PBL). The tutor's support varies according to the setting, and it is pertinent to explore group effectiveness in relation to different settings, for example online or campus-based. The PBL groups' effectiveness can partly be assessed in terms of cognitive and motivational aspects, using a self-report tool to measure PBL group effectiveness, the Tutorial Group Effectiveness Instrument (TGEI). This study's aim was to explore tutor participation in variations of online and campus-based tutorial groups in relation to group effectiveness. A secondary aim was to validate a tool for assessing tutorial group effectiveness in a Swedish context. METHODS: A cross-sectional study was conducted with advanced-level nursing students studying to become specialised nurses or midwives at a Swedish university. The TGEI was used to measure motivational and cognitive aspects in addition to overall group effectiveness. The instrument's items were translated into Swedish and refined with an expert group and students. The responses were calculated descriptively and compared between groups using the Mann-Whitney U and Kruskal-Wallis tests. A psychometric evaluation was performed using the Mokken scale analysis. The subscale scores were compared between three different tutor settings: the tutor present face-to-face in the room, the tutor present online and the consultant tutor not present in the room and giving support asynchronously. RESULTS: All the invited students (n = 221) participated in the study. There were no differences in motivational or cognitive aspects between students with or without prior PBL experience, nor between men and women. Higher scores were identified on cognitive aspects (22.6, 24.6 and 21.3; p < 0.001), motivational aspects (26.3, 27 and 24.5; p = 002) and group effectiveness (4.1, 4.3, 3.8, p = 0.02) for the two synchronously tutored groups compared to the asynchronously tutored group. The TGEI subscales showed adequate homogeneity. CONCLUSIONS: The tutor's presence is productive for PBL group effectiveness. However, the tutor need not be in the actual room but can provide support in online settings as long as the tutoring is synchronous.

The borderline between life and death: Mental healthcare professionals' experience of why patients commit suicide during ongoing care.

AIMS AND OBJECTIVES: To explore mental health professionals' experiences in regard to circumstances that cause the patient to take their own life during ongoing care. BACKGROUND: Suicide is a worldwide health problem, and of those who take their own life, nearly 20% have had contact with a psychiatric unit. Mental health professionals may have extended intuitive knowledge that has not been made visible. Mental health professionals' experiences can contribute knowledge that can complement suicide risk assessments and can be helpful in developing approaches and strategies where the hope is to identify and draw attention to people at risk of taking their own life. DESIGN: A reflective lifeworld research. METHODS: Twelve interviews with mental health professionals with experience of working in caring relationships with patients that had taken their life during the period of care. The study was performed in accordance with COREQ (see Supporting Information Data S1). RESULTS: Mental health professionals' experiences regarding circumstances that cause the patient to take their own life are related to the patient's life circumstances that led to a loss of dignity, and finally beyond retrieval. Mental health professionals share patients' struggle to choose between life and death, the darkness of their life and their hopeless situation. This shared experience also makes the mental health professionals wish to relieve patient's suffering but also gives them an understanding of why patients take their own life. CONCLUSIONS: The mental health professionals experience how the patient loses the possibility of living a worthwhile life, recognise darkness within the patient and see how the patient's life is fragile. Suicide described as logical and expected, based on their life and life circumstances, has not been found in previous research. Bearing this in mind, should psychiatric care focus on a proactive approach and act when these circumstances are identified? RELEVANCE TO CLINICAL PRACTICE: The Mental health professionals' tacit knowledge may be used to strengthen uncertain suicide assessments.

Trajectory of suicide as a transformation in obscurity-As told by the deceased's next of kin.

There is a collective call from the field of suicide research for studies on the individual dynamics of suicidality in order to understand the deadliness of the suicidal process. This study examines the deceased next of kin's ('survivor's) experience of the suicidal process in order to gain perspectives that can be used in the preventive care of suicidal patients. The aim of this study was to explore the suicide process through the suicide survivor's experience. The study is designed and conducted through a phenomenological, reflective lifeworld approach. Twelve in-depth interviews concerning lived experiences of a suicide were conducted. The suicide process is described as the emerging of an obscured transformation of self, and an aligning to this changing understanding of self that forms a unique suicidal death course. This death course contains the co-occurrence of life and death orientations. Survivors' collected knowledge of a suicidal trajectory helps us understand the life conditions of a suicidal person that has ended their life. Life orientation and experiences of self-governance are critical parts of a suicidal trajectory and can have great preventive potential for care and assessments during suicidality. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were used for the reporting structure of this article.

Care culture as a meaning-making process: a study of a mistreatment investigation.

Culture might offer significant insights into the circumstances under which mistreatment occurs. Our aim with this study was to understand and explore institutional mistreatment from a care culture perspective. We used a case study with a triangulating methodology. It involved 12 individual interviews, one focus group interview with four people, a 2-day field study, and a document study. The case was a mistreatment situation that had occurred in municipal care, in which residents had been locked in their rooms at night. Two different care cultures were identified that could give a richer contextual understanding of the motives behind the institutional mistreatment. The service culture was need-oriented and emphasized freedom in care provision. The motherhood culture was characterized by protection and safeguarding of the vulnerable residents. Both cultures showed traces of caring values, but when important caring values were absent, this created a seedbed for mistreatment.

Aspects of care culture in municipal care for elderly people: a hermeneutic documentary analysis of reports of abuse.

INTRODUCTION: Care culture is an important contextual factor in care practice. Care culture refers to a process of creating meaning out of tradition, horizon and bildung. The care culture is often taken into consideration in situations that go beyond the everyday routine, such as cases of abuse. In Sweden, health care professionals are obliged to document and report any suspected bad conditions. Although the reports have the potential to communicate underlying values and assumptions about the care culture, such studies have not been performed. AIM: The aim of this study was to understand how elderly care abuse in institutions could be understood from a care culture perspective. DESIGN AND METHODS: A hermeneutic documentary analysis was conducted on 269 incident reports concerning suspected mistreatment of the elderly in three municipalities in Sweden. The hermeneutic analysis followed a four-stage process: selecting and reading the text, setting out the context, closing the hermeneutic circle, and finally creating a conceptual bridge towards a critical understanding from a phenomenological lifeworld perspective. FINDINGS: The care of the elderly in the municipality was based on a social culture that placed residents' needs at the centre. Following routines were considered important in preventing mistreatment and were intended to ensure that all patients were treated fairly and equally. Care was described as task oriented and often lacking in interpersonal relations. From a phenomenological lifeworld perspective, it was interpreted that in the municipalities' care of the elderly, there was a focus on elderly people's freedom at the expense of the vulnerability aspects of well-being. CONCLUSION: Raising awareness of the care culture underlying abuse could help to improve understanding of care practice. Change may be only possible when reflected on the existing perspectives underpinning the care culture, and integrate them into a broader framework for caring.

The significance of routines in nursing practice.

AIM: The aim of this study was to illuminate the significance of routines in nursing practice. BACKGROUND: Clinical nursing is performed under the guidance of routines to varying degrees. In the nursing literature, routine is described as having both negative and positive aspects, but use of the term is inconsistent, and empirical evidence is sparse. In the research on organisational routines, a distinction is made between routine as a rule and routine as action. DESIGN: A qualitative design using a phenomenological-hermeneutic approach. METHOD: Data collection from three focus groups focused on nurses' experience of routines. Seventeen individual interviews from a previous study focusing on caring culture were also analysed in a secondary qualitative analysis. All participants were employed as 'qualified nursing pool' nurses. RESULT: Routines are experienced as pragmatic, obstructive and meaningful. The aim of the pragmatic routine was to ensure that daily working life works; this routine is practised more on the basis of rational arguments and obvious intentions. The obstructive routine had negative consequences for nursing practice and was described as nursing losing its humanity and violating the patient's integrity. The meaningful routine involved becoming one with the routine and for the nurses, it felt right and meaningful to adapt to it. CONCLUSIONS: Routines become meaningful when the individual action is in harmony with the cultural pattern on which the nursing work is based. Instead of letting contemporary practice passively become routine, routines can be assessed and developed using research and theoretical underpinnings as a starting point for nursing practice. RELEVANCE TO CLINICAL PRACTICE: Leaders have a special responsibility to develop and support meaningful routines. One approach could be to let wards examine their routines from a patient perspective on the basis of the themes of pragmatic, meaningful and obstructive routine.

Impact of suicide on health professionals in psychiatric care mental healthcare professionals' perceptions of suicide during ongoing psychiatric care and its impacts on their continued care work.

People who attempt suicide as well as those who actually take their own life often have communicated their suicidal thoughts and feelings to healthcare professionals in some form. Suicidality is one of the most challenging caring situations and the impacts of suicide care affect both the professional and personal lives of healthcare professionals. This study investigates how mental health professionals perceive suicide while providing psychiatric care and how this perception impacts their continued care work. This qualitative exploratory study includes 19 mental health professionals in psychiatry who had provided care for patients who had taken their own life. Analysis followed the principle of phenomenography. The findings reveal that these healthcare professionals experienced an internal conflict that affected them both personally and professionally. In response to these conflicts, the healthcare professionals developed strategies that involved a safety zone and increased vigilance. Those who were able to commute and balance a safe spot and learning to be more vigilant seem to have developed as a result of patient's suicide. These findings have the potential to help establish a post-suicide caring process where healthcare professionals learn to make better suicide assessments, become more open to talking about death with patients, and develop a humbler approach to understanding a patient's suicide.

Hope and Technology: Other-Oriented Hope Related to Eye Gaze Technology for Children with Severe Disabilities.

Introducing advanced assistive technology such as eye gaze controlled computers can improve a person's quality of life and awaken hope for a child's future inclusion and opportunities in society. This article explores the meanings of parents' and teachers' other-oriented hope related to eye gaze technology for children with severe disabilities. A secondary analysis of six parents' and five teachers' interview transcripts was conducted in accordance with a phenomenological-hermeneutic research method. The eye gaze controlled computer creates new imaginations of a brighter future for the child, but also becomes a source for motivation and action in the present. The other-oriented hope occurs not just in the future; it is already there in the present and opens up new alternatives and possibilities to overcome the difficulties the child is encountering today. Both the present situation and the hope for the future influence each other, and both affect the motivation for using the technology. This emphasises the importance of clinicians giving people opportunities to express how they see the future and how technology could realise this hope.

Teachers' Experiences of Hope Using Eye Gaze-Controlled Computers.

Technology to control a computer with eye gaze is a fast growing field and has promising implications for people with severe disabilities. 11 school staff was interviewed about teaching using an eye gaze computer for pupils with severe disabilities. The eye gaze computer creates opportunities for the teachers to get a glimpse of emotions and knowledge that is "inside" the pupil's trapped body and creates hope concerning the pupil's future possibilities. The implementation of the eye gaze computer create new imaginations for the future for the pupil and when the teachers are exposing themselves to the uncertainty, hope becomes a source of motivation and behavior.

Gaze-based assistive technology used in daily life by children with severe physical impairments - parents' experiences.

OBJECTIVE: To describe and explore parents' experiences when their children with severe physical impairments receive gaze-based assistive technology (gaze-based assistive technology (AT)) for use in daily life. METHODS: Semi-structured interviews were conducted twice, with one year in between, with parents of eight children with cerebral palsy that used gaze-based AT in their daily activities. To understand the parents' experiences, hermeneutical interpretations were used during data analysis. RESULTS: The findings demonstrate that for parents, children's gaze-based AT usage meant that children demonstrated agency, provided them with opportunities to show personality and competencies, and gave children possibilities to develop. Overall, children's gaze-based AT provides hope for a better future for their children with severe physical impairments; a future in which the children can develop and gain influence in life. CONCLUSION: Gaze-based AT provides children with new opportunities to perform activities and take initiatives to communicate, giving parents hope about the children's future.

The Nordic Tradition of Caring Science: The Works of Three Theorists.

The Nordic tradition of caring science has had a significant influence on healthcare research, healthcare education and clinical development in the Nordic countries from 1990 to the present. Theoretical contributions from the professors and scientists Katie Eriksson, Kari Martinsen and Karin Dahlberg form the basis for this paper. The tradition has established a paradigm of ethics, ontology and epistemology for the caring science domain. Short introductions present the scientific background of Eriksson, Martinsen, and Dahlberg, and show how interpretive teamwork has led to the formation of an intertwining of the essential qualities of the theories. The synthesis emphasizes caring science as a human science, and views caring as a natural phenomenon where the patient's world, vulnerability, health, and suffering are primary. In the art and act of caring, relationships and dialogue are essential; they provide parameters where caring becomes visible in its absence.

Care and caring culture as experienced by nurses working in different care environments: a phenomenological-hermeneutic study.

AIM: The aim is to understand and develop the concept of care and caring culture and to do so based on the empirical/phenomenological standpoint of nurses' lived experiences of working in different environments. BACKGROUND: Culture, care and caring are significant concepts mentioned and used in connection with nursing practice. In the nursing literature, the 'caring culture' as a concept is mostly taken for granted, and it is up to the reader to determine what caring culture means. METHOD: A phenomenological-hermeneutic method was used to uncover the meaning of lived experiences though interpretation of interviews transcribed as text. Seventeen nurses working on different wards were interviewed in 2006. A follow-up focus-group discussion was conducted with seven of the nurses 1 year later for validation of the findings. FINDINGS: Thematic analyses revealed five themes: you have to adapt to the existing care culture; seeing the invisible; being yourself; the strong personalities; the patients must adapt themselves to the circumstances. Adaptation to unwritten routines entails adaptation to the culture and the common value system. On wards described as "homelike", nurses may act in a way that reflects their own values. DISCUSSION: The care and caring culture can be understood from the perspective of what it means to care and from the perspective of how care provision is accomplished. To attain a caring culture founded on certain values, for example caritas, love and charity, we must first understand how the organization and personnel understand caring.