Managing "socially admitted" patients in hospital: a qualitative study of health care providers' perceptions.

BACKGROUND: Emergency departments are a last resort for some socially vulnerable patients without an acute medical illness (colloquially known as "socially admitted" patients), resulting in their occupation of hospital beds typically designated for patients requiring acute medical care. In this study, we aimed to explore the perceptions of health care providers regarding patients admitted as "social admissions." METHODS: This qualitative study was informed by grounded theory and involved semistructured interviews at a Nova Scotia tertiary care centre. From October 2022 to July 2023, we interviewed eligible participants, including any health care clinician or administrator who worked directly with "socially admitted" patients. Virtual or in-person individual interviews were audio-recorded and transcribed, then independently and iteratively coded. We mapped themes on the 5 domains of the Quintuple Aim conceptual framework. RESULTS: We interviewed 20 nurses, physicians, administrators, and social workers. Most identified as female (n = 11) and White (n = 13), and were in their mid to late career (n = 13). We categorized 9 themes into 5 domains: patient experience (patient description, provision of care); care team well-being (moral distress, hierarchy of care); health equity (stigma and missed opportunities, prejudices); cost of care (wait-lists and scarcity of alternatives); and population health (factors leading to vulnerability, system changes). Participants described experiences caring for "socially admitted" patients, perceptions and assumptions underlying "social" presentations, system barriers to care delivery, and suggestions of potential solutions. INTERPRETATION: Health care providers viewed "socially admitted" patients as needing enhanced care but identified individual, institutional, and system challenges that impeded its realization. Examining perceptions of the people who care for "socially admitted" patients offers insights to guide clinicians and policy-makers in caring for socially vulnerable patients.

A Study on Perceptions of Undetectable = Untransmittable Among Gay Men with Human Immunodeficiency Virus in the HIV Community on Twitter in Japan: An Exploratory Qualitative Study Using a Modified Grounded Theory Approach.

This study explores the perceptions of the Undetectable = Untransmittable (U = U) campaign among gay men with HIV in Japan who are part of the HIV community on Twitter. We conducted detailed semistructured interviews with 12 participants using a modified grounded theory approach. The analysis resulted in 31 concepts, 5 subcategories, 9 categories, and 2 core categories. The relationship between categories and core categories was examined in conjunction with the transcriptions, yielding a comprehensive category map depicting the process of understanding U = U. The three main processes emerged: participants expressed "expectations for improvement," underwent stages of "understanding U = U," and encountered "dilemmas" in forming their opinions. There are two routes to "understanding U = U": Route 1 involved a frictionless understanding of U = U, and Route 2 involved difficulty in understanding the slogan. In both routes, participants experienced the dilemma of "but I still have HIV" and regarding its ease of use. These dilemmas and difficulties in understanding U = U affected their "expectations for improvement." Efforts to promote U = U in Japan must address challenges in public understanding and related dilemmas. This entails reformulating the U = U message in simpler terms, leveraging professional explanations, disseminating it to a broader audience, and incorporating ideas from individuals living with HIV to enhance the message.

Applications of Grounded Theory Methodology to Investigate Hearing Loss: A Methodological Qualitative Systematic Review With Developed Guidelines.

OBJECTIVES: Qualitative methodologies are commonly adopted in hearing loss research. Grounded theory methodology is increasingly used to establish novel theories explaining experiences related to hearing loss. Establishing and improving the quality of grounded theory studies has been emphasized as critical to ensuring theoretical trustworthiness. Thus, the primary aim of the present study was to systematically review hearing loss research studies that have applied grounded theory methodology and assess the methodological quality of those grounded theory applications. Secondarily aims were to (i) explore how grounded theory methodology has been applied to investigate hearing loss, and (ii) use the findings of the review to develop a set of guidelines to aid the future high-quality application of grounded theory methodology to hearing loss research. DESIGN: Original peer-reviewed studies applying grounded theory methodology and published in English were identified through systematic searches in 10 databases; Applied Social Sciences Index and Abstracts, British Nursing Index, Cumulative Index to Nursing and Allied Health Literature, EBSCO, Global Health, MEDLINE (OvidSP), PsycINFO, PubMed, Scopus, and Web of Science. The quality of studies was assessed according to 12 grounded theory principles using the Guideline for Reporting, Evaluating, and applying the core principles of Grounded Theory studies (GUREGT) tool. Data were analyzed using qualitative inductive thematic analysis. RESULTS: After the removal of duplicates, 155 articles were retrieved. Of those, 39 met the criteria for inclusion in the systematic review. An increase in the adoption of grounded theory methodology to investigate hearing loss was identified with the number of published studies tripling in the last 5 years. Critical appraisal using the GUREGT tool identified four studies as high-quality. Most included studies were of moderate study quality (n = 25), and 10 were classified as being of low study quality. Using inductive thematic analysis, the included studies investigated one of four areas relating to hearing loss: (a) Living with hearing loss, (b) Identity and hearing loss, (c) Coping strategies for hearing loss, and (d) Audiological counseling and rehabilitation. Analysis also identified four main grounded theory factors frequently overlooked in hearing loss research: the different schools of grounded theory, sampling strategy, sample size, and the depth of grounded theory application. CONCLUSIONS: Use of grounded theory methodology is increasing at a rapid rate in hearing loss research. Despite this, studies conducted in the field to date do not meet and apply the full spectrum of grounded theory principles, as outlined by the GUREGT tool. To improve methodological rigor in future studies using grounded theory, we propose a set of guidelines that address the most commonly overlooked methodological considerations in hearing loss studies to date. The guidelines are designed to aid researchers to achieve high methodological quality in any field, improve qualitative rigor, and promote theoretical credibility.

Suffering and adjustment: a grounded theory of the process of coping with financial toxicity among young women with breast cancer.

PURPOSE: To explore the process of coping with financial toxicity among young women with breast cancer and formulate a grounded theory that serves as a foundation for creating intervention strategies aimed at supporting cancer survivors. METHODS: A qualitative study using the Corbin and Strauss variant of grounded theory. A series of in-depth interviews were carried out with young women with breast cancer (n = 29) using the theoretical sampling method. We analyzed data by coding core categories in the patients' coping processes and developing theory around these categories. Data collection and analysis were performed simultaneously. RESULTS: A substantial theory of the process of coping with financial toxicity among young female breast cancer survivors was constructed. Two core concepts, suffering and adjustment, were identified. Young women with breast cancer suffered from financial toxicity, which was related to risk factors, coping resources, and unmet needs. To overcome financial toxicity, young women with breast cancer adjusted by reshaping consumption concept, re-dividing of family functions, re-planning of occupation career, and rebuilding life confidence. CONCLUSION: This qualitative study constructed a theory delineating the coping strategies employed by young women with breast cancer in response to financial toxicity, offering profound insights into the intricacies of cancer-related financial toxicity. Identifying risk factors, enhancing coping resources, and meeting unmet needs would be helpful to patients' adjustment to financial stress.

A model for older adults' coping with the death of their child: a grounded theory study.

BACKGROUND: Losing a child at an old age while also facing health problems and physical limitations can have significant negative impacts on parents' lives such as anxiety, depression, and impairment in social functions. The process of coping with the death of a child is particularly unknown among older adults. Therefore, this study aimed to explore how older adults cope with the death of their child. METHOD: This qualitative study was conducted in 2020-2021, using Corbin and Strauss (2015) approach to the grounded theory method. The sampling began purposefully and continued theoretically until theoretical saturation was achieved. Semi-structured interviews were conducted to collect data from Iranian older adults who had experienced the death of their child. To ensure data trustworthiness, the Guba and Lincoln (1985) criteria were utilized. A qualitative data analysis software, MAXQDA2020, was used to manage the data. FINDINGS: The results of this study were obtained from 27 participants. The main concern of older adults was the fear of their lives collapsing following the death of their child. Participants utilized three main strategies to address their concerns: attempting to rebuild themselves, connecting to a higher power, and searching for positivity amidst grief. The central category that emerged from the analysis was "improving physical, mental, and spiritual capacities," resulting in personal growth and improved social relationships. CONCLUSIONS: Through the use of the three aforementioned strategies, older adults were able to overcome their primary concern of the fear of their lives collapsing following the death of their child. Further development of the theory is suggested in order to design a model that can facilitate older adults' coping with this difficult life event.

Strategies to promote treatment compliance: a grounded theory study with relatives of people with a serious mental health condition.

BACKGROUND: Treatment pressures encompass communicative strategies that influence mental healthcare service users' decision-making to increase their compliance with recommended treatment. Persuasion, interpersonal leverage, inducements, and threats have been described as examples of treatment pressures. Research indicates that treatment pressures are exerted not only by mental healthcare professionals but also by relatives. While relatives play a crucial role in their family member's pathway to care, research on the use of treatment pressures by relatives is still scarce. Likewise, little is known about other strategies relatives may use to promote the treatment compliance of their family member with a serious mental health condition. In particular, no study to date has investigated this from the perspective of relatives of people with a serious mental health condition. AIM: The aim of this study was to answer the following research questions: Which types of treatment pressures do relatives use? Which other strategies do relatives use to promote the treatment compliance of their family member with a serious mental health condition? How do treatment pressures relate to these other strategies? METHODS: Eleven semi-structured interviews were conducted with relatives of people with a serious mental health condition in Germany. Participants were approached via relatives' self-help groups and flyers in a local psychiatric hospital. Inclusion criteria were having a family member with a psychiatric diagnosis and the family member having experienced formal coercion. The data were analyzed using grounded theory methodology. RESULTS: Relatives use a variety of strategies to promote the treatment compliance of their family member with a serious mental health condition. These strategies can be categorized into three general approaches: influencing the decision-making of the family member; not leaving the family member with a choice; and changing the social or legal context of the decision-making process. Our results show that the strategies that relatives use to promote their family member's treatment compliance go beyond the treatment pressures thus far described in the literature. CONCLUSION: This qualitative study supports and conceptually expands prior findings that treatment pressures are not only frequently used within mental healthcare services but also by relatives in the home setting. Mental healthcare professionals should acknowledge the difficulties faced and efforts undertaken by relatives in seeking treatment for their family member. At the same time, they should recognize that a service user's consent to treatment may be affected and limited by strategies to promote treatment compliance employed by relatives.

How palliative care professionals develop coping competence through their career: A grounded theory.

BACKGROUND: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career. AIM: To develop an explanatory model of coping for palliative care professionals throughout their professional career. DESIGN: A grounded theory study. Two researchers conducted constant comparative analysis of interviews. SETTING/PARTICIPANTS: Palliative care nurses and physicians across nine services from Spain and Portugal (n = 21). Theoretical sampling included professionals who had not continued working in palliative care. RESULTS: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one's own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one's own limitations. Fifth: grounding care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed sometimes can be reversed because the professional has come to understand how to care for themselves. CONCLUSIONS: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work.

More than the sum of its parts-A constructivist grounded-theory study on specialist palliative care during crises like the COVID pandemic.

BACKGROUND: The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper understanding of specialist services during crises. This is essential in preparation for further crises. AIM: To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example for arising future crises. DESIGN: Qualitative interview study across Germany, following a constructivist grounded theory methodology. SETTING/PARTICIPANTS: Eleven semi-structured interviews with experts with overarching knowledge of structures and processes in specialist palliative care between 05-07/2020 and between 02-06/2021, 23 semi-structured interviews with healthcare professionals working in a specialist palliative care setting. RESULTS: The complex system of palliative care provision during crises has properties that cannot be understood as separated parts of the care process. The pandemic led to unique structural and processual challenges characterized by interconnectedness, uncertainty, dynamic, underlying dilemmas, and unclear long-term goal. In response to the pandemic, teams experienced different phases, which enhanced adaption, innovation, and progress within complex care situations. Creative strategy approaches and dynamic responsiveness facilitated innovative development and could lead to long-lasting improvement within services. Availability of information, transparent communication, comprehensible instructions, participation in decision-making, and search for solutions contributed to teams' proactive development throughout the pandemic. CONCLUSION: Addressing the complex problems in specialist palliative care caused by crises requires system thinking and a learning mindset. This can facilitate teams to overcome the crisis and move forward rather than bounce back to normal.

"Collateral beauty." Experiences and needs of professionals caring for parents continuing pregnancy after a life-limiting prenatal diagnosis: A grounded theory study.

BACKGROUND: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. AIM: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. DESIGN: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. SETTING: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. RESULTS: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. CONCLUSIONS: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.

Oscillating autonomy: a grounded theory study of women's experiences of COVID-19 infection during pregnancy, labour and birth, and the early postnatal period.

BACKGROUND: Testing positive for COVID-19 was associated with higher rates of detrimental psycho-social and physical health outcomes. The COVID-19 pandemic caused unprecedented disruption to everyday life. This included major reconfiguration of maternal, child, and perinatal mental health and care services and provision. This study aimed to investigate the experiences of those who tested positive for COVID-19 during pregnancy, labour and birth, or the early postnatal period. METHODS: National on-line recruitment from across the United Kingdom resulted in sixteen mothers being invited to qualitative semi-structured interviews to understand the experiences of mothers who had been infected by COVID-19 during pregnancy, labour and birth, or the early postnatal period. Interviews were conducted, recorded, and transcribed using video-conferencing software. A Grounded Theory approach was used to analyse the data gathered pertaining to women's experiences of their positive COVID-19 diagnosis during pregnancy, labour and birth, or the early postnatal period. RESULTS: The theory of 'Oscillating Autonomy - Losing and Seeking to Regain Control by Striving for Agency' was developed, comprising three main themes: 'Anxious Anticipation: The fear of infection was worse than COVID-19 itself'; 'Fluctuating Agency: What changed when COVID-19 took control'; and 'Reclaiming Control: Seeking reassurance during COVID-19 positivity'. Testing positive for COVID-19 whilst pregnant, during labour or birth, or in the early postnatal period was associated with a perceived loss of control. Those who were able to regain that control felt more secure in their situation. CONCLUSIONS: Support was paramount to manage increased vulnerability, as was reassurance achieved by information seeking and positive action including increased health monitoring and COVID-19 vaccination.

'Yourself in all your forms': A grounded theory exploration of identity safety in medical students.

INTRODUCTION: Identity threats, such as stereotype threat and microaggressions, impair learning and erode well-being. In contrast to identity threat, less is known about how learners experience feelings of safety regarding their identity. This exploratory study aims to develop a theory of identity safety in the clinical learning environment. METHODS: This multi-institutional, qualitative interview study was informed by constructivist grounded theory and critical pedagogy. Participants were clinical students at three public medical schools in the United States in 2022. Investigators purposively sampled participants for interviews based on their responses to an 11-item survey with an open-ended question soliciting students' personal identities and responses to both the racial/ethnic and gender Stereotype Vulnerability Scales. The investigators interviewed, coded, constantly compared and continued sampling until the codes could be developed into categories, then concepts and finally into a theory. The team engaged in critical reflexivity throughout the analytic process to enrich data interpretations. RESULTS: Sixteen diverse students were interviewed. We organised their identity-salient experiences into identity threat, threat mitigation and identity safety. Participants experienced identity threat through unwelcoming learning environments, feeling compelled to change their behaviour in inauthentic ways or sociopolitical threat. Threat mitigation occurred when a participant or supervisor intervened against an identity threat, dampening but not eliminating the threat impact. Participants characterised identity safety as the ability to exist as their authentic selves without feeling the need to monitor how others perceive their identities. Identity safety manifested when participants demonstrated agency to leverage their identities for patient care, when others upheld their personhood and saw them as unique individuals and when they felt they belonged in the learning environment. DISCUSSION: Attending to identity safety may lead to educational practices that sustain and leverage team members' diverse identities. Identity safety and threat mitigation may work together to combat identity threats in the learning environment.

Navigating between two figured worlds: A constructivist grounded theory study on residents' workplace experiences with health care management tasks.

INTRODUCTION: Medical residents may be required to handle health care management (HCM) tasks alongside their clinical duties, despite not having received training to perform them. However, little research has been done on how medical residents acquire HCM skills at the workplace and how these experiences impact their learning. METHODS: We completed a qualitative research study using the Constructivist Grounded Theory approach inform by the Figured World theory. To gather data, we held focus groups and conducted semi-structured interviews with 22 medical residents from various disciplines and learning levels at Pontificia Universidad Javeriana. We utilised iterative data collection and analysis, constant comparison methods and theoretical sampling to construct our findings. RESULTS: We constructed two different worlds to represent how residents acquire HCM skills: the non-managing physician and the physician-as-manager. The former was characterised by a discourse that underplayed the role of the HCM tasks as part of residents' training, was full of negative interactions with the health care team and limited residents' agency. In the latter, residents collaborated and learned from health care team members, had supervisors who modelled how to incorporate HCM tasks into daily activities and expanded residents' agency. Residents developed their professional identity according to the world they were introduced into. DISCUSSION: Educational leaders must understand that the non-managing physician figured world gives residents a feeling of uprooting and discomfort when carrying out this type of tasks. To transform this world into the physician-as-manager, it is necessary to reconfigure some workplace hierarchies, consolidate interprofessional collaborations and change the discourse perpetuated by influential role models. Supervisors must also strengthen their knowledge of HCM and improve its integration into clinical practice. Any effort to train residents on HCM competencies could be lost if the workplace underscores their value in patient care.

'Walking together': How relationships shape physicians' clinical reasoning.

INTRODUCTION: The clinical reasoning literature has increasingly considered context as an important influence on physicians' thinking. Physicians' relationships with patients, and their ongoing efforts to maintain these relationships, are important influences on how clinical reasoning is contextualised. The authors sought to understand how physicians' relationships with patients shaped their clinical reasoning. METHODS: Drawing from constructivist grounded theory, the authors conducted semi-structured interviews with primary care physicians. Participants were asked to reflect on recent challenging clinical experiences, and probing questions were used to explore how participants attended to or leveraged relationships in conjunction with their clinical reasoning. Using constant comparison, three investigators coded transcripts, organising the data into codes and conceptual categories. The research team drew from these codes and categories to develop theory about the phenomenon of interest. RESULTS: The authors interviewed 15 primary care physicians with a range of experience in practice and identified patient agency as a central influence on participants' clinical reasoning. Participants drew from and managed relationships with patients while attending to patients' agency in three ways. First, participants described how contextualised illness constructions enabled them to individualise their approaches to diagnosis and management. Second, participants managed tensions between enacting their typical approaches to clinical problems and adapting their approaches to foster ongoing relationships with patients. Finally, participants attended to relationships with patients' caregivers, seeing these individuals' contributions as important influences on how their clinical reasoning could be enacted within patients' unique social contexts. CONCLUSION: Clinical reasoning is influenced in important ways by physicians' efforts to both draw from, and maintain, their relationships with patients and patients' caregivers. Such efforts create tensions between their professional standards of care and their orientations toward patient-centredness. These influences of relationships on physicians' clinical reasoning have important implications for training and clinical practice.

Women's decision process when actively choosing to 'go flat' after breast cancer: a constructivist grounded theory study.

OBJECTIVE: This study aims to describe a conceptual model that could illuminate the decision process women go through when choosing to go flat on one or both sides due to breast cancer. METHODS: A qualitative design, with constructivist grounded theory was used. Eighteen women were individually interviewed, digitally or by telephone, until saturation was reached. Data were analysed using a constant comparative iterative method in accordance with grounded theory. By examining the text data to identify the decision process for going flat and rejecting reconstructive surgery open coding was obtained. As the study proceeded patterns were explored and categories developed into a core category. RESULTS: The overall decision process for women choosing to go flat on one or both sides emerged in three phases: Phase 1, where the women are forced to "Face the cancer", Phase 2 comprising "Reflections on health and motivation" and Phase 3, described as "Hobson's choice". The fundament of the decision process was found in the core category "Establishing and safeguarding the chosen self". CONCLUSIONS: The decision process involved in actively going flat and rejecting reconstructive surgery is founded in the individual woman's motivations, such as view of femininity and apprehensions about the offered reconstructive surgery.

'Every turn can be the last one I do' - Perceptions of injury risk in high-performance snow sports and its implication for injury prevention.

OBJECTIVES: High-performance snow sports (HPSS) athletes compete in a performance-driven context with a high risk of injury. While there is a lack of evidence on effective prevention measures in snow sports, this study explored the perspectives and perceptions of HPSS stakeholders on sports injury prevention. METHODS: We conducted an exploratory qualitative study based on the grounded theory principles through 11 semistructured interviews with athletes, coaches and healthcare providers from different national teams about sports injury prevention. The interviews were inductively analysed through constant comparative data analysis. RESULTS: Participants defined risk management as a central concept in which they approached injury prevention by assessing, managing and sometimes accepting risks. Many factors, such as athlete-related and external factors, are considered in this process, ultimately influencing their decision-making. Participants acknowledged the value of experience when managing and dealing with risks, a key aspect of their learning process and career development. Within this context, open and trustworthy communication and shared responsibilities among all stakeholders influenced and shaped injury prevention strategies and behaviours. Understanding and balancing out speed and risks was considered pivotal in their daily practice. Therefore, injury prevention awareness, ownership, communication, teamwork and shared responsibilities may contribute to the success of sports injury prevention in HPSS. CONCLUSION: These findings substantiate the significance of such contextual factors in sports injury prevention. Considering the high-risk nature of HPSS, injury prevention suggests a shift towards risk management strategies, with a strong emphasis on contextual factors and their interactions. Young athletes might benefit from educational interventions centred on developing skills to assess and manage risks.

Children's behavioural and emotional reactions towards living with congenital heart disease in Saudi Arabia: A grounded theory study.

BACKGROUND: A high incidence of children with congenital heart disease (CHD) was found in Saudi Arabia (SA). International literature reports that children with CHD exhibit behavioural and emotional issues due to experiencing hospitalisation and clinical treatments combined with a dearth of qualitative understanding of the experiences of younger children with CHD. Therefore, the aim was to explore the behaviour and emotions of 4-10-year-olds with CHD in SA through children's accounts of their own experiences and parental proxy reports of children's behaviour and emotions. METHODS: Charmaz's constructivist grounded theory (GT) approach was used. Twenty single semi-structured interviews of 10 child/parent dyads were undertaken at a hospital clinic in SA. Children's interviews were combined with an arts-based approach using drawings, pictures and faces of emotions (emojis). Constant comparison analysis was undertaken. Consolidated Criteria for Reporting Qualitative Research guidelines was followed in reporting this study. FINDINGS: A substantive GT: children's behavioural and emotional reactions towards stressors related to living with CHD was developed and provides new insights into children's and parents' perceptions of the children's behavioural and emotional reactions to living with CHD in SA. The theory proposes that children's reactions to living with CHD relate to medical treatment stressors, sociocultural stressors and physical change stressors. Several further factors influenced children's responses to these stressors. CONCLUSION: Children and parents in SA contributed to a new understanding of the relationship between CHD and children's behavioural and emotional reactions. In addition, findings support the need for early assessment of behaviour and emotions among children with CHD and the application of preventative and supportive measures for the children and their families in SA. PATIENT OR PUBLIC CONTRIBUTION: Before the research commenced, the developmental appropriateness of the proposed arts-based data collection tools was tested with three healthy children aged 6-9 years old; the tools were then revised accordingly before the interviews were undertaken.

Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease.

BACKGROUND: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. OBJECTIVE: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. METHODS: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. RESULTS: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. CONCLUSION: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. PATIENT OR PUBLIC CONTRIBUTION: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members.

Aging with my family: a grounded theory approach on the role of family when aging as foreign-born.

BACKGROUND: Research indicates that it is the quality of the closest relationships in the mixture of social relations that matters most for older adults. For older foreign-born, especially those who migrate late in life, the family is often the only socioeconomical resource they can lean on. This study aims to explore how older foreign-born perceive the role of family as they age. METHODS: The study design has a grounded theory approach. Data consist of individual open-ended interviews with 15 foreign-born informants aged between 60 and 85 years old who migrated to Sweden as adults from various parts of the world. RESULTS: The findings demonstrate that family was an essential part of the informants' lives as they lived for their families and their families lived for them. Family solidarity was described as a cultural heritage they took over from their original families and a cultural heritage they wished to pass on to their future generations. They found that this was what separated them as foreign-born from native-born. Memories of their parents reminded them of their biological, social, and cultural heritages. The intimate relationship with their spouses in a life course had served as a source of validation of their individual identities and promoted personal growth and self-esteem. The role as a loving and caring parent entailed a sense of accomplishment and satisfaction for the life lived. And now as grandparents, the role as a link between the family's historical heritage and the future generation entailed not only a sense of coherence as they aged but also hope and meaning beyond their own lives. CONCLUSIONS: The older foreign-born experienced life satisfaction as they aged with their families. Family meant community and solidarity. It was in the family that they found their distinct roles that had defined them. Family was an indispensable part of their social identity. The findings highlight the importance of older foreign-born being studied from a family and lifetime perspective.

Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration.

BACKGROUND: Age-Related Macular Degeneration (AMD) is an eye disease associated with age that causes progressive and irreversible loss of central vision, while the peripheral visual ability remains. The occurrence of and especially late AMD is estimated to increase extensively to 2040 among persons aged ≥ 65 in Scandinavia, due to an increasing aging population. OBJECTIVES: The present study explored what it means to live with AMD through the eyes of those living with the condition. METHODS: This is an explorative interview study. People who were ≥ 65 years old, living in their own homes, and diagnosed with advanced dry AMD in one or both eyes, causing a visual acuity of no more than 0.3 or worse in the best eye, were invited to participate in the study. The method chosen was the constructivist grounded theory, where reality is seen as fundamentally social and processual and a way of accessing the participants' experiences, thoughts, and feelings. RESULTS: In total, 12 interviews were conducted. Living with dry AMD confronted different problems and challenges. The substantive theory, Perpetuating ability to live life as usual, is characterised by a desire to continue life as usual, which requires an acceptance of the disease's progress, self-acceptance of the new me, and an acceptance that the new life needs to be lived a little more carefully. Moreover, the participants used three strategies to resolve their main concern by maintaining an everyday life 1) Navigating the new normal, 2) Trusting own ability, and 3) Interdepending. CONCLUSION: Maintaining an everyday life is the primary concern among people with AMD. In supporting self-care, gaining information about the subjective experience to support their everyday living is of the utmost importance. This grounded theory captures valuable knowledge of how the older adults resolved their main concern "you got to keep on" despite their affected vision by "facing the fact" live life as usual since since life goes on. Our study also gives rise both to implications for research and practice in order to strengthen older people with AMD facing their future challenges. TRIAL REGISTRATION: The Swedish Ethical Review Authority (EPN 2021/02877).

"Just pee in the diaper" - a constructivist grounded theory study of moral distress enabling neglect in nursing homes.

BACKGROUND: A growing body of evidence shows that many nursing home residents' basic care needs are neglected, and residents do not receive qualitatively good care. This neglect challenges nursing staff´s professional and personal ideals and standards for care and may contribute to moral distress. The aim of this study was to investigate how nursing staff manage being a part of a neglectful work culture, based on the research question: "How do nursing home staff manage their moral distress related to neglectful care practices?" METHODS: A qualitative design was chosen, guided by Charmaz´s constructivist grounded theory. The study was based on 10 individual interviews and five focus group discussions (30 participants in total) with nursing home staff working in 17 different nursing homes in Norway. RESULTS: Nursing staff strive to manage their moral distress related to neglectful care practices in different ways: by favouring efficiency and tolerating neglect they adapt to and accept these care practices. By disengaging emotionally and retreating physically from care they avoid confronting morally distressing situations. These approaches may temporarily mitigate the moral distress of nursing staff, whilst also creating a staff-centred and self-protecting work culture enabling neglect in nursing homes. CONCLUSIONS: Our findings represent a shift from a resident-centred to a staff-centred work culture, whereby the nursing staff use self-protecting strategies to make their workday manageable and liveable. This strongly indicates a compromise in the quality of care that enables the continuation of neglectful care practices in Norwegian nursing homes. Finding ways of breaking a downward spiralling quality of care are thus a major concern following our findings.