A fast transition: A case study of patients' experiences during the diagnostic and surgical treatment phase of an accelerated brain cancer pathway.

BACKGROUND: Patients receiving a brain cancer diagnosis may face cognitive decline and a poor prognosis. In addition, they suffer from a high symptom burden in a complex cancer pathway. The aim of this study was to investigate the early hospital experiences of brain tumour patients during the diagnostic and surgical treatment phase. METHODS: A descriptive longitudinal single-case study design was used, and data were analysed via systematic text condensation. RESULTS: The patients' experiences of being diagnosed with and treated for brain cancer were interpreted in terms of the central theme: a fast transition into an unknown journey. This theme consisted of the following subthemes: emotionally overwhelmed, putting life on hold and an unfamiliar dependency. CONCLUSIONS: Patients diagnosed with brain cancer struggle with overwhelming emotions due to this sudden life-threatening diagnosis, their fear of brain surgery and their progressing dependence. Patients did not voice their feelings, fears or needs, so these may easily be overlooked and unmet. A proactive and continuous care approach throughout the diagnostic phase is needed to support these patients.

Time and change: a typology for presenting research findings in qualitative longitudinal research.

BACKGROUND: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings. METHODS: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis. RESULTS: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings. CONCLUSIONS: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.

Nurses' and Doctors' Experiences of Transferring Adolescents or Young Adults With Long-Term Health Conditions From Pediatric to Adult Care: A Metasynthesis.

The transfer of adolescents and young adults (AYA) with long-term health conditions from pediatric to adult care is a multidisciplinary enterprise where nurses and doctors play an important role. This review aimed to identify and synthesize evidence from qualitative primary reports on how nurses and doctors experience the transfer of AYA aged 13 to 24 years with long-term health conditions to an adult hospital setting. We systematically searched seven electronic databases for reports published between January 2005 and November 2021 and reporting nurses' and doctors' experiences. We meta-summarized data from 13 reports derived from 11 studies published worldwide. Using qualitative content analysis, we metasynthesized nurses' and doctors' experiences into the theme "being boosters." Boosting AYA's transfer was characterized by supporting AYA's and their parents' changing roles, smoothening AYA's transition from pediatric to adult care, and handling AYA's encounters with a different care culture.

Historiographic and biographic accounts of Faroese nurses' training and health-promoting work from 1910 to the end of the 1930s.

The Nordic country Faroe Islands consists of 18 mountain islands situated in the North Atlantic Sea. In the late 1800s, nursing in the Faroe Islands was behind international standards. A transition towards organised nursing commenced when Danish deaconesses arrived in 1897; their missions were to serve as nurses and train Faroese women in nursing. The overall aim of this research is to add to the history of Faroese nurses' training and work during the first decades of the 1900s, decades when Faroese nursing became visible through the presence of deaconesses and trained nurses. With historiographic and biographic approaches and in the context of Faroese history and nursing theory and research, we present accounts about four Faroese nurses' living, training and work during the three first decades of the 1900s. These years were progressive for Faroese nursing in hospital care and public health around on the islands, and a struggle to combat tuberculosis took place. We conclude by emphasising the importance of considering the beginning of professional nursing in a small faraway country where resilient nurses worked with ingenuity and often exceeded geographic and professional boundaries to help and support sick and injured compatriots, promoting their health and well-being.

Qualitative longitudinal research in health research: a method study.

BACKGROUND: Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and variations within this approach. The aim of this study was to map how QLR articles within the existing health research literature are designed to capture aspects of time and/or change. METHODS: This method study used an adapted scoping review design. Articles were eligible if they were written in English, published between 2017 and 2019, and reported results from qualitative data collected at different time points/time waves with the same sample or in the same setting. Articles were identified using EBSCOhost. Two independent reviewers performed the screening, selection and charting. RESULTS: A total of 299 articles were included. There was great variation among the articles in the use of methodological traditions, type of data, length of data collection, and components of longitudinal data collection. However, the majority of articles represented large studies and were based on individual interview data. Approximately half of the articles self-identified as QLR studies or as following a QLR design, although slightly less than 20% of them included QLR method literature in their method sections. CONCLUSIONS: QLR is often used in large complex studies. Some articles were thoroughly designed to capture time/change throughout the methodology, aim and data collection, while other articles included few elements of QLR. Longitudinal data collection includes several components, such as what entities are followed across time, the tempo of data collection, and to what extent the data collection is preplanned or adapted across time. Therefore, there are several practices and possibilities researchers should consider before starting a QLR project.

"Take good care of yourself" An integrative review of older widows' self-care for health and well-being.

Take good care of yourself is a regard often said to older bereaved women. However, what does it mean? Though self-care is a well-known phenomenon within health, it is not well understood in the context of late life spousal bereavement and widowhood. We undertook an integrative review to synthesize knowledge of older women's self-care challenges, resources and activities when bereaved and in a healthy transition to widowhood. Good care refers to health-promoting self-care and can be explained as the older widows' ability to access and mobilize resources and activities that are significant for a healthy transition to widowhood.

Spouse Caregivers' Experiences of Suffering in Relation to Care for a Partner With Brain Tumor: A Qualitative Study.

BACKGROUND: Spouses often undertake the main caring role for a partner with primary malignant brain tumor (PMBT). Yet, demanding and challenging caring responsibilities especially because of the partner's cognitive declines can affect the spouse caregiver's well-being. OBJECTIVE: The aim of this study was to investigate spouses' experiences of suffering in their role as main caregiver of a partner with PMBT. METHODS: A hermeneutical qualitative design was used to collect and analyze data. Ten spouses (aged 36-76 years) were interviewed in depth twice 1 year apart, using semistructured interview guides. RESULTS: The spouse caregivers' experiences of suffering in their role as their partner's main caregiver were interpreted according to 3 central themes: "Enduring everyday life," "Being overlooked and hurt," and "Being acknowledged and feeling good." CONCLUSION: Spouse caregivers of a partner with PMBT are suffering from exhaustion and suppression of their own emotions to endure the caring responsibilities. They need support to manage their everyday hardship; however, their experiences seem to be easily overlooked. This causes disappointment and hurts their dignity. Acknowledgment through simple acts of practical help or time to talk are consoling and alleviate their experiences of suffering. IMPLICATIONS FOR PRACTICE: An intervention that supports healthcare professionals to facilitate the spouse caregivers' suffering is welcoming. The focus of the intervention may involve a sensitive awareness toward the spouse caregiver's individual resources and limitations and the relational and communicative competences of the healthcare professionals in their encounters with spouse caregivers that avoid hurting the spouse caregiver's dignity.

Being cross pressured-parents' experiences of the transfer from paediatric to adult care services for their young people with long term conditions: A systematic review and qualitative research synthesis.

BACKGROUND: Family members of young people (13-24 years) with long-term conditions tend to experience multiple challenges when their children transfer from paediatric to adult care, as do the patients themselves. OBJECTIVES: To identify, interpret and theoretically conceptualise the meaning of parents' experiences of the transfer from paediatric to adult care of their young people with long-term conditions. DESIGN: A qualitative research synthesis. DATA SOURCES: We obtained articles from Medline, CINAHL, PsycINFO, EMBASE, Scopus, and Web of Science. Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dissertations and Theses. REVIEW METHODS: Based on a previously published protocol, we followed the guidelines from the Joanna Briggs Institute. Sandelowski and Barroso's qualitative research synthesis approach guided the metasynthesis. Articles published between 1999 and March 2019 were systematically searched for. FINDINGS: Twenty-three reports from seven Western countries representing 454 parents including significant others such as aunts and grandparents of 462 young people with various diagnoses contributed to the review. 'Being cross-pressured' was the metasynthesis found to reflect parents' experiences of the transfer from paediatric to adult care of their young people with long-term conditions. The metasynthesis comprised four themes: 'Fluctuating between parental roles', 'Navigating contrasting healthcare contexts', 'Making decisions in the face of inner conflict', and 'Trusting their child's self-management ability'. CONCLUSIONS: Our metasynthesis finding of parents' experiences of being cross-pressured provides a new way of thinking about the study phenomena which is supported by transitions theory holding that multiple transitions can take place simultaneously involving myriads of concurrent and conflicting demands. The cross pressure may overwhelm parents. The clinical implications are to recognise parents' experiences and distress in healthcare planning to promote safe and predicable transfers of their young people. Provision of healthcare to parents during transfer needs to be tailored to a collaborative decision-making process between parents, their young people, and involved practitioners across paediatric and adult healthcare services. Tweetable abstract: Parents experienced being cross-pressured when their young people with long-term conditions were transferred from paediatric to adult care.

Physical activity experiences of children and adolescents with asthma: a qualitative systematic review protocol.

OBJECTIVE: The objective of the review is to synthesize existing knowledge about experiences of children and adolescents with asthma related to participation in, or limitation of, physical activity. INTRODUCTION: Limitations of physical activity, expressed as a barrier of bodily movement, may relate to physiological restraints, as well as emotional and social delimitation, in children and adolescents with asthma. Participation in physical activity is related to management of asthma and is important for social inclusion. Through childhood and adolescence, physical activity enhances physical, cognitive, and social development, and a dose-response relationship between physical activity and several indicators of improved health has been established. Knowledge is needed about experiences of physical activity in children and adolescents with asthma to tailor care and implement exercise and physical activity supporting interventions into clinical practice. INCLUSION CRITERIA: This review will consider qualitative studies that include subjective experiences related to participation in, or limitation of, physical activity in children and adolescents (six to 18 years of age) with asthma. All contexts and countries will be included. METHODS: MEDLINE, Embase, PsycINFO, CINAHL, SPORTDiscus, SocINDEX, and Social Science Citation Index List will be searched for relevant studies. Studies published in English with no date limitation will be included. Study selection, assessment of methodological quality, data extraction, synthesis, and assessment of confidence in the findings will be conducted using the JBI meta-aggregation approach. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020164797.

Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson's disease.

Treatment with deep brain stimulation for Parkinson's disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses. Purpose: The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process. Method: 38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process. Results: The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple's everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story. Conclusion: The triadic dynamics in the meetings were quite particular. The main focus was the patients' and spouses' stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson's disease and the couple's everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.

Acceptance and adjustment: A qualitative study of experiences of hearing and vision impairments and daily life among oldest old recipients of home care.

INTRODUCTION: The severity of age-related hearing and vision impairments increases with age. Such sensory impairments are risk factors for functional decline, reduced social participation, withdrawal, depression and accidents, and hence they make people vulnerable and adversely affect their quality of life. AIM: The aim of this study was to explore how the oldest old recipients of home care experience sensory impairments in daily life. DESIGN: An inductive, descriptive research design was used. METHOD: Ten recipients of home care with a mean age of 89 years were interviewed in their homes. The study was implemented in accordance with the suggestions from Elo and Kyngäs for inductive content analysis. FINDINGS: The main theme concerned acceptance and adjustment in daily life. Subcategories concerning the category of reduced hearing were identified as "acceptable though annoying" and "hesitant about using hearing aids." Subcategories concerning the category of reduced vision were "reading is increasingly challenging" and "living with vision diseases." The third category of feeling weak was elucidated in the subcategories "troublesome bodily changes" and "strenuous days with limited energy." CONCLUSIONS: It is imperative to recognise that the oldest old are in a distinct phase of the lifespan. Despite this population being aware of their hearing and vision impairments, they do not always have the strength to alter the situation. Instead they accept it; they often struggle with more serious health challenges. Therefore, they are not prioritising using their limited energy reserves to try to improve or optimise their hearing and vision impairments themselves. IMPLICATIONS FOR PRACTICE: The oldest old with sensory impairments cannot be expected to perform all the necessary activities of daily living or address their functional sensory impairments. Close monitoring and assistance need to be applied to the oldest old.

Parents' experiences of neonatal transfer. A meta-study of qualitative research 2000-2017.

Transfers of critically ill neonates are frequent phenomena. Even though parents' participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents' experiences of neonatal transfer is lacking. This paper describes a meta-study addressing qualitative research about parents' experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues of qualitative studies concerning parents' experiences of neonatal transfer over the course of this meta-study (2000-2017). Meta-theory and meta-method analyses showed that caring, transition, and family-centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta-data-analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified 'wavering and wandering' as a metaphoric representation of the parents' experiences. The findings add knowledge about meta-study as an approach for comprehensive qualitative research and point at the value of meta-theory and meta-method analyses.

The existential experience of everyday life with systemic lupus erythematosus.

AIM: To explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus. BACKGROUND: Systemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus. DESIGN: A qualitative design guided by Van Manen's hermeneutic-phenomenological methodology. METHOD: Individual in-depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 - October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool. FINDINGS: The main existential experience was interpreted as a person "moving with the waves of systemic lupus erythematosus" constituted by the themes "oscillating between presence and absence of systemic lupus erythematosus," "recognizing space and bodily possibilities and limitations" and "being enriched through relationships and activities." When systemic lupus erythematosus was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control. CONCLUSION: Daily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback-in-life by illness might challenge well-being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.

Being in a standstill-of-life: women's experience of being diagnosed with systemic lupus erythematosus: a hermeneutic-phenomenological study.

Systemic lupus erythematosus (SLE) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter-related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients' existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE.

Relationship between physical activity level and psychosocial and socioeconomic factors and issues in children and adolescents with asthma: a scoping review.

BACKGROUND: Asthma is a heterogeneous chronic airway disease which may reduce capability for physical activity. In healthy peers, physical activity is influenced by psychosocial and socioeconomic factors. Knowledge about the role of these factors has not been mapped in children and adolescents with asthma. OBJECTIVE: The main objective of this scoping review was to identify psychosocial and socioeconomic factors associated with physical activity level in children and adolescents with asthma in the literature. The specific objectives were to map the instruments used to measure these factors, report on the construction and validation of these instruments, map psychosocial and socioeconomic issues related to physical activity level reported in qualitative studies, and identify gaps in knowledge about the relationship between psychosocial and socioeconomic factors and physical activity level in children and adolescents with asthma. INCLUSION CRITERIA TYPES OF PARTICIPANTS: Children and adolescents with asthma aged six to 18 years. CONCEPT: Psychosocial and socioeconomic factors related to physical activity level and participation. CONTEXT: All physical activity contexts. TYPES OF SOURCES: Quantitative and qualitative primary studies in English, with no date limit. SEARCH STRATEGY: The databases searched included nine major databases for health and sports science, and five databases for unpublished studies. After screening and identification of studies, the reference lists of all identified reports were searched, and forward citation searches were conducted using four databases. EXTRACTION OF THE RESULTS: The following data were extracted: (a) relevant study characteristics and assessment of physical activity level, (b) instruments used to assess psychosocial and socioeconomic factors, (c) association between physical activity level and these factors, (d) construction and validation of instruments, and (e) psychosocial and socioeconomic issues related to physical activity participation. PRESENTATION OF THE RESULTS: Twenty-one quantitative and 13 qualitative studies were included. In cross-sectional studies, enjoyment, physical self-concept, self-efficacy, attitudes and beliefs about physical activity and health, psychological distress, health-related quality of life, and social support were more often reported as being correlated with physical activity level. In three studies, the construct validity was assessed by factor analysis and construct reliability tests for the study population. Qualitative studies reported 10 issues related to physical activity participation, and capability and being like peers were most commonly reported. There was no direct evidence that qualitative research informed the development or adjustment of instruments in quantitative studies. CONCLUSIONS: Seven psychosocial factors correlated with physical activity level; capability and being like peers were the most commonly reported issues. Reports of the construction and validation of instruments were sparse.

Relationship between physical activity level and psychosocial and socioeconomic factors and issues in children and adolescents with asthma: a scoping review protocol.

REVIEW QUESTION/OBJECTIVE: The first objective of this scoping review is to identify and map information about instruments used to measure psychosocial and socioeconomic factors associated with level of physical activity (PA) in children and adolescents with asthma that have been reported in quantitative literature, and to report on the construction and validation of these instruments. The second objective is to identify and map psychosocial and socioeconomic issues related to PA level reported in qualitative literature and gaps in the evidence on the relationship between psychosocial and socioeconomic factors and PA level in children and adolescents with asthma.Specifically the review questions are as follows.

Newly graduated nurses' use of knowledge sources: a meta-ethnography.

AIM: To advance evidence on newly graduated nurses' use of knowledge sources. BACKGROUND: Clinical decisions need to be evidence-based and understanding the knowledge sources that newly graduated nurses use will inform both education and practice. Qualitative studies on newly graduated nurses' use of knowledge sources are increasing though generated from scattered healthcare contexts. Therefore, a metasynthesis of qualitative research on what knowledge sources new graduates use in decision-making was conducted. DESIGN: Meta-ethnography. DATA SOURCES: Nineteen reports, representing 17 studies, published from 2000-2014 were identified from iterative searches in relevant databases from May 2013-May 2014. REVIEW METHODS: Included reports were appraised for quality and Noblit and Hare's meta-ethnography guided the interpretation and synthesis of data. RESULTS: Newly graduated nurses' use of knowledge sources during their first 2-year postgraduation were interpreted in the main theme 'self and others as knowledge sources,' with two subthemes 'doing and following' and 'knowing and doing,' each with several elucidating categories. The metasynthesis revealed a line of argument among the report findings underscoring progression in knowledge use and perception of competence and confidence among newly graduated nurses. CONCLUSION: The transition phase, feeling of confidence and ability to use critical thinking and reflection, has a great impact on knowledge sources incorporated in clinical decisions. The synthesis accentuates that for use of newly graduated nurses' qualifications and skills in evidence-based practice, clinical practice needs to provide a supportive environment which nurtures critical thinking and questions and articulates use of multiple knowledge sources.

Navigating in an unpredictable daily life: a metasynthesis on children's experiences living with a parent with severe mental illness.

A large group of individuals suffering from mental illness are parents living with their children. These children are invisible in the health care even though at risk for illhealth. The aim of this metasynthesis was to advance knowledge of how children of parents with mental illness experience their lives, thus contributing to the evidence of this phenomenon. The metasynthesis is following Sandelowski and Barroso's guidelines. Literature searches covering the years 2000 to 2013 resulted in 22 reports which were synthesised into the theme 'navigating in an unpredictable everyday life' and the metaphor compass. Children of parents with mental illness irrespective of age are responsible, loving and worrying children who want to do everything to help and support. Children feel shame when the parent behaves differently, and they conceal their family life being afraid of stigmatisation and bullying. When their parent becomes ill, they distance to protect themselves. The children cope through information, knowledge, frankness and trustful relationships. These children need support from healthcare services because they subjugate own needs in favour of the parental needs, they should be encouraged to talk about their family situation, and especially, young children should to be child-like, playing and seeing friends.

Using Sandelowski and Barroso's Meta-Synthesis Method in Advancing Qualitative Evidence.

The purpose of this article was to iteratively account for and discuss the handling of methodological challenges in two qualitative research syntheses concerning patients' experiences of hospital transition. We applied Sandelowski and Barroso's guidelines for synthesizing qualitative research, and to our knowledge, this is the first time researchers discuss their methodological steps. In the process, we identified a need for prolonged discussions to determine mutual understandings of the methodology. We discussed how to identify the appropriate qualitative research literature and how to best conduct exhaustive literature searches on our target phenomena. Another finding concerned our status as third-order interpreters of participants' experiences and what this meant for synthesizing the primary findings. Finally, we discussed whether our studies could be classified as metasummaries or metasyntheses. Although we have some concerns regarding the applicability of the methodology, we conclude that following Sandelowski and Barroso's guidelines contributed to valid syntheses of our studies.