Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy-A qualitative study.

Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents' experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL. This study explored parents' experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman. The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver's responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals' information. For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child's condition, the resources are available, and the parent's HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.

Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy.

Parents of children with epilepsy play a key role in the management of their child's condition. Their level of health literacy (HL), which refers to their ability to seek, understand, assess, remember, and utilize health information, is essential for handling the child optimally. The aim of this study was to investigate characteristics associated with high and low levels of different dimensions of HL in parents. HL was assessed with the multidimensional Health Literacy Questionnaire (parents' version) and the electronic Health Literacy Scale, using data from a cohort of 254 parents of children <12 years. Bivariate correlation and multiple hierarchal linear regression (STATA version 16 SE) were used to investigate variables associated with HL. Self-efficacy (St. ß = 0.14-0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. ß = 0.18-0.21), level of education (St. ß = 0.16-0.27), and the child having a coordinator of services (St. ß = 0.16-0.28) were associated with higher scores, while sick leave due to the child's epilepsy (St. ß = -0.13 to -0.16), child comorbidities (St. ß = -0.15 to -0.19), and higher levels of mental distress (St. ß = -0.13 to -0.19) were associated with lower scores in several of the different HL dimensions. A total of 44.8% of the parents scored over the cutoff (≥1.85) predicting a mental disorder on the Hopkins symptom checklist. This is the first study to investigate multidimensional parental HL in a childhood epilepsy context. Our results highlight the need to investigate multiple variables, especially mental distress, to determine characteristics that may predict low parental HL. Further qualitative studies are needed to explore the underlying reasons for the parents' HL scores and to develop inventions tailored to meet different HL needs.

Central venous catheter access and procedure compliance: A qualitative interview study exploring intensive care nurses' experiences.

OBJECTIVE: To explore intensive care nurses' experiences with and perceptions of using a standardised central venous catheter procedure to prevent bacterial contamination when accessing patients' central venous catheters. DESIGN AND METHODOLOGY: This study employed an interpretative qualitative design. Data was collected through semi-structured, individual interviews and Qualitative Content Analysis was used in data analysis. SETTING: Seven Norwegian intensive care nurses were recruited using a purposeful sampling strategy. FINDINGS: Three main themes were identified. 1). Individualised practice revealed varying knowledge of and commitment to following the central line procedure. 2). Risk desensitisation revealed a continuous use of central lines, acute situations and a lack of information on infections, which affect usage. 3). Professional working culture showed nurse-to-nurse interaction, which promoted compliance with the procedure. Their interplay created a team spirit whereby nurses worked together to improve patient safety. CONCLUSIONS: This study shows the diversity and complexity of factors affecting intensive care nurses' procedure compliance when accessing central lines. The themes of Individualised practice and Risk desensitisation pose a substantial threat to healthcare quality and patient safety in the ICU. Exposure to infection risks could be reduced by applying these themes to inform and strengthen continuing education programs and audit processes. The theme of Professional working culture shows the positive influence nurses can have on each other, promoting compliance when accessing central lines. Intensive care nurses should be aware that their voice matters and that challenging poor practice does not have to be confrontational. Leadership should look for ways to encourage this type of nurse-to-nurse interaction.

Ethics and quality care in nursing homes: Relatives' experiences.

BACKGROUND: A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for nursing staff, less stress, and greater mutual understanding. Going through studies focusing on the experiences of nursing home patients' relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words. AIM: The aim of the study is to investigate relatives of persons with dementia's experiences with quality care in nursing homes. METHOD: The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological-hermeneutical method for the study of lived experiences. PARTICIPANTS AND RESEARCH CONTEXT: Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included. ETHICAL CONSIDERATIONS: The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study. FINDINGS: Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives' experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt. DISCUSSION: The results are discussed considering the concepts of trust, power and asymmetry. CONCLUSION: When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim.

Quality dementia care: Prerequisites and relational ethics among multicultural healthcare providers.

BACKGROUND:: Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. PURPOSE:: The aim of this study is to illuminate multi-ethnic healthcare providers' lived experiences of their own working relationship, and its importance to quality care for people with dementia. RESEARCH DESIGN:: The study is part of a greater participatory action research project: 'Hospice values in the care for persons with dementia'. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. PARTICIPANTS AND RESEARCH CONTEXT:: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. ETHICAL CONSIDERATIONS:: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. FINDINGS:: The results show that good working relationships, characterized by understanding each other's vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. DISCUSSION:: The results are discussed in the light of Lögstrup's relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. CONCLUSION:: The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance.

Minority healthcare providers experience challenges, trust, and interdependency in a multicultural team.

BACKGROUND: The nursing community in the Nordic countries has become multicultural because of migration from European, Asian and African countries. In Norway, minority health care providers are recruited in to nursing homes which have become multicultural workplaces. They overcome challenges such as language and strangeness but as a group they are vulnerable and exposed to many challenges. PURPOSE: The aim is to explore minority healthcare providers, trained nurses and nurses' assistants, and their experiences of challenges when working in a multicultural team in a Norwegian context. RESEARCH METHOD: The study has a qualitative design, using narrative interviews, and a phenomenological-hermeneutic analysis method to explore the experiences of challenges in dementia care. ETHICAL CONSIDERATIONS: The study was approved by The Norwegian Regional Ethics Committee, and the Norwegian Social Science Data Services. PARTICIPATION AND RESEARCH CONTEXT: Five informants from different African, Asian and European countries participated in the study. The study was conducted in a Norwegian nursing home, in a dementia care unit. FINDINGS: The results show that minority health care providers experience and find meaning in being a member of a team, they overcome challenges, characterized by the interdependency in the team, appreciating new cultural experiences and striving to belong. They must overcome challenges such as language problems and the feeling of strangeness. DISCUSSION: The findings are discussed considering Løgstrup's ethic of proximity, the ethical demand of trust, and interdependency. The ethical demand is an answer to a common, transparent, unspoken agreement to be met, seen, and understood. CONCLUSION: The study shows that cooperation in a multi-professional and multi-ethnic team is important, and secures the quality of care to persons with dementia. Further research is necessary to examine the relation between a multi-ethnic staff and the patients experiencing dementia. Further research is necessary to examine ethnicity, the relation between a multi-ethnic staff, the patients experiencing dementia and next of kin.

Parents' experiences of videoconference as a tool for multidisciplinary information exchange for children with epilepsy and disability.

AIMS AND OBJECTIVES: To explore the parents' experiences with the multidisciplinary information exchange between different levels of the health- social and school services using videoconference. BACKGROUND: Children with epilepsy and disability are in need of long-term multidisciplinary help and support. The information exchange between the child's providers of support is challenging. Scant attention has been paid to the parents' experiences of the information exchange. DESIGN: A qualitative study with a phenomenological-hermeneutical research approach. METHOD: Children with epilepsy and disability had undergone a multidisciplinary assessment in a hospital in the tertiary health service followed by information exchange with each child's local support service using videoconference. Five parents were interviewed individually within a week after the videoconference. The COREQ checklist was used in the process of reporting on the empirical material. RESULTS: The increased local participation in the videoconference and the knowledge translation between the professionals made the parents save time, as they did not have to explain the written reports to each provider locally. The impact of technology created an emotional distance to the person on the screen and the information exchanged that some enjoyed while others disliked. The quality of the relationships to the professionals seemed to be crucial for the parents to feel safe talking about sensitive tasks. CONCLUSION: The parents prefer videoconference as a tool for information exchange to traditional face-to-face meetings as it enables discussions between professionals that might prevent treatment misunderstandings. They experience the method as time-saving and patient-centred. RELEVANCE TO CLINICAL PRACTICE: Professionals should be aware of the possible side effects of the impact of technology that might affect the interaction and the information exchange in a negative way. The findings are likely to be transferable beyond the current context.

Ethical and cultural striving: Lived experiences of minority nurses in dementia care.

BACKGROUND: Nursing workforce in Western European health institutions has become more diverse because of immigration and recruitment from Asian, African, and East-European countries. Minority healthcare providers may experience communication problems in interaction with patients and coworkers, and they are likely to experience conflict or uncertainty when confronted with different cultural traditions and values. Persons with dementia are a vulnerable group, and the consequences of their illness challenge the ability to understand and express oneself verbally. The large number of minority healthcare providers in nursing homes underlines the importance to obtain better knowledge about this group's experiences with the care challenges in dementia care units. RESEARCH QUESTION: Can you tell about any challenges in the experiences in the encounter with persons suffering from dementia? Participants and research context: Five minority healthcare providers in a nursing home, in a dementia unit. All guidelines for research ethic were followed. Ethical consideration: The participants were informed that participation was voluntary, and they were guarantied anonymity. METHOD: We used a qualitative method, conducting individual interviews, using a narrative approach. In the analysis, we applied a phenomenological-hermeneutical method, developed for researching life experiences. FINDINGS: One theme and four subthemes: striving to understand the quality of care for persons with dementia. The subthemes: sensitivity to understand the patients' verbal and nonverbal expressions. To understand gratefulness, understand the patient as an adult and autonomous person, and understand the patient as a patient in a nursing home. Challenges comprise both ethical and cultural striving to understand persons with dementia. CONCLUSION: To care for persons with dementia in an unfamiliar context may be understood as a striving for acting ethically, when at the same time striving to adapt and acculturate to new cultural norms, in order to practice good dementia care.

Ethical challenges: Trust and leadership in dementia care.

INTRODUCTION: To meet and take care of people with dementia implicate professional and moral challenges for caregivers. Using force happens daily. However, staff also encounter challenges with the management in the units. Managing the caretaking function is also significant in how caretakers experience working in dementia care. PURPOSE: The purpose of this study is to explore the caregiver's experiences with ethical challenges in dementia care settings and the significance of professional leadership in this context. METHOD: The design is qualitative, and data appear through narrative interviews. A total of 23 caretakers participated in the study. The transcribed interviews were subjected to a phenomenological-hermeneutical interpretation. ETHICAL CONSIDERATIONS: The respondents signed an informed consent for participation prior to the interviews. They were assured anonymity and confidentiality in the publication of the data. Ricoeur's method for interpretation ensures anonymity as the researcher relates to the data as one collective text. The study is part of a larger research project in ethics, in its entirety approved in line with the Helsinki Convention. RESULTS: The findings show that the caretakers experienced inadequacy. Some of them described a negative work atmosphere where they experienced that their leaders did not take them seriously. Because of this, informal negative sub-groups functioned as an exclusive debriefing arena. Some of the informants described the opposite experience where the leaders actively supported them. DISCUSSION: The analyses of the findings are discussed in light of the concepts of trust and mistrust in leadership. CONCLUSION: There is a correlation between the leadership and the caregivers' experience of being in difficult situations.

Quality care for persons experiencing dementia: the significance of relational ethics.

The degree of success in creating quality care for people suffering from dementia is limited despite extensive research. This article describes healthcare providers' experience with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care. The material is based on qualitative, in-depth individual narrative interviews with 12 professional healthcare providers from two different nursing homes. The transcribed interview texts were subjected to a phenomenological-hermeneutical interpretation. To provide quality care to patients with dementia, the healthcare providers emphasized the importance of sensing and understanding the patients' emotional and bodily expressions through sentient attentiveness and recognition of the patient as a person. They also described reciprocity of expressions in the relationship where the patient recognized them both as persons and healthcare providers. The analyses of the findings are, inter alia, discussed in light of Løgstrup's relational philosophy of ethics.

Time ethics for persons with dementia in care homes.

The purpose of this study was to explore situations experienced by 12 health-care providers working in two nursing homes. Individual interviews, using a narrative approach, were conducted. A phenomenological-hermeneutical method, developed for researching life experiences, was applied in the analysis. The findings showed that good care situations are experienced when the time culture is flexible, the carers act in a sovereign time rhythm, not mentioning clock time or time as a stress factor. The results are discussed in terms of anthropological and sociological theory: time as event and action and flexible time cultures. Care settings for persons with dementia represent many challenges, such as a heavy workload and time strain. Time ethics is a construction, understanding time used in caring for persons suffering from dementia, which involves a mature, responsible and flexible nursing approach to these patients.

Dignity of older people in a nursing home: narratives of care providers.

The purpose of this study was to illuminate the ethically difficult situations experienced by care providers working in a nursing home. Individual interviews using a narrative approach were conducted. A phenomenological-hermeneutic method developed for researching life experience was applied in the analysis. The findings showed that care providers experience ethical challenges in their everyday work. The informants in this study found the balance between the ideal, autonomy and dignity to be a daily problem. They defined the culture they work in as not supportive. They also thought they were not being seen and heard in situations where they disagree with the basic values of the organization. The results are discussed in terms of Habermas's understanding of modern society. Care settings for elderly people obviously present ethical challenges, particularly in the case of those suffering from dementia. The care provider participants in this study expressed frustration and feelings of powerlessness. It is possible to understand their experiences in terms of Habermas's theory of modern society and the concept of the system's colonization of the life world.