Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members.

BACKGROUND: Inflammatory bowel disease (IBD) significantly impacts patients and their families. To provide support, understanding the effects on the wider family is crucial. However, limited research exists on the impact of IBD on family members of adults diagnosed with IBD. This study addresses this knowledge gap. METHODS: Underpinned by interpretive phenomenology, this study used in-depth, semi-structured online interviews to explore relatives' experiences. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using reflexive thematic analysis. RESULTS: Forty-three purposively selected interviewees comprising 17 people with IBD and 26 family members (parents, children, siblings, and partners) revealed 3 main themes: (1) "life is a rollercoaster," (2) "there have been a lot of bridges to cross along the way," and (3) "my life would be better if…" Participants highlighted that IBD has both positive and negative impacts on family members in terms of emotional well-being, relationship, roles and responsibilities, day-to-day burden, and sibling suffering. Some employed adaptive coping strategies such as creating social networks and open communication, while others relied on maladaptive coping strategies, such as avoidance and alcohol abuse. Family members expressed the need for proactive communication, information, and support from healthcare professionals. CONCLUSIONS: IBD affects the emotional and psychosocial well-being of family members, eliciting both adaptive and maladaptive coping strategies. Healthcare professionals need to adopt a holistic approach to managing IBD that considers the psychosocial and emotional challenges faced by individuals and their families.

Inflammatory bowel disease has a profound impact on the psychosocial and emotional well-being of family members, diminishing their quality of life. Family members seek guidance on coping strategies and interventions to bolster their psychological, social, and emotional well-being.

'There was a pivotal moment'. The dynamics, transitions, adaptations and trajectories of nursing at the front-line in the UK during the COVID-19 pandemic.

Using qualitative interview data (n = 142 interviews) generated with 50 nurses, over the course of the COVID-19 pandemic, this paper traces the trajectories of nurses in the UK and attempts to unpick the interplay between structure and agency in their narratives. Interviews were inductively analysed for themes and an additional narrative analysis was undertaken to preserve the form of each participant's narrative. We argue that nurses' pandemic trajectories occurred within the 'psychological vulnerability-stigma nexus' which operates within health and social care providers in the UK and whilst constraining nurses' agency at times it could also provide an impetus to act agentically. We found that the nurses' COVID-19 trajectories were characterised by: getting by, getting out (job-hopping) getting needs met and getting organised. We call for more considered systemic support to be generated and consistently provided to nurses to ensure retention of nurses and the security of society to avoid exacerbating existing workforce shortages.

Parental perceptions of chickenpox and the varicella vaccine: A qualitative systematic review.

BACKGROUND: In countries where varicella vaccination is not on the routine childhood immunisation schedule, such as those in the United Kingdom (UK), chickenpox is an almost universal disease of childhood. Chickenpox can cause serious complications, particularly in infants, pregnant women, and the immunocompromised. In November 2023 the varicella vaccine was recommended for inclusion in the UK routine childhood immunisation schedule. Successful rollout of the vaccine may be hindered by parental concerns about vaccine safety and efficacy, and perceptions of chickenpox as a mild illness. OBJECTIVE: To examine parental perceptions of chickenpox and varicella vaccination, which may be crucial to effective vaccination campaigns. DESIGN: Qualitative systematic review and thematic analysis. METHODS: Six electronic databases were systematically searched for studies published between 2016 and 2023: CINAHL, EMBASE, MEDLINE, PsycInfo, PubMed, and Web of Science. The included studies were appraised against the Critical Appraisal Skills Program checklist for qualitative studies. Thematic analysis was used to analyse qualitative data, through the development of themes. RESULTS: 22 articles were included in this review, and five themes identified: perceptions that chickenpox is a mild illness, that parents have concerns about varicella vaccine efficacy and safety, a notion of natural immunity as superior, social determinants of health influence vaccine decision making, and vaccination is overwhelming perceived as a parental decision. CONCLUSIONS: Whilst some parents displayed an acceptance and willingness to vaccinate against chickenpox, many expressed concerns, and perceived chickenpox as a routine unworrying childhood illness. Analysis demonstrated a knowledge gap in understanding UK parental opinions regarding chickenpox and varicella vaccination, highlighting the need for research in this area, particularly given ongoing reconsideration for inclusion in the UK vaccination schedule. REGISTRATION: The review was registered on PROSPERO, registration ID CRD42021236120.

'Pretty cathartic actually': Reflections on the attempt to reduce re-traumatization of researchers and nurses taking part in a longitudinal interview study.

AIM: To critically evaluate the concepts of harm and re-traumatization in the research process and to explore the ethical implications of conducting research on distressing topics using our research on the experiences of nurses working during the COVID-19 pandemic as an exemplar. DESIGN: Longitudinal qualitative interview study. METHODS: Using qualitative narrative interviews, we explored the impacts of the COVID-19 pandemic on nurses' psychological well-being in the UK. RESULTS: To reduce the potential for harm to both research participants and researchers, the members of the research team were keen to establish ways to reduce the power differential between the researcher and participants. We found that our collaborative and team-based approach, with participant autonomy and researcher reflexivity embedded into the research framework, enabled the sensitive generation of data. CONCLUSION: Reduction of potential harm for both participants and researchers in the generation of at times highly distressing data with a traumatized population was achieved through a respectful, honest and empathetic approach within a team that met frequently for reflection. IMPACT: The research participants were not harmed by our research, instead they expressed gratitude at being given space and time to tell their stories in a supportive environment. Our work advances nursing knowledge through accentuating the value of giving autonomy to research participants to control their stories whilst working within a supportive research team with emphasis placed on reflexivity and debriefing. PATIENT AND PUBLIC CONTRIBUTION: Nurses working clinically during COVID-19 were involved in the development of this study. Nurse participants were given autonomy over how and when they participated in the research process.

Speaking up during the COVID-19 pandemic: Nurses' experiences of organizational disregard and silence.

AIM: To critically examine nurses' experiences of speaking up during COVID-19 and the consequences of doing so. DESIGN: Longitudinal qualitative study. METHODS: Participants were purposively sampled to represent differing geographical locations, specialities, settings and redeployment experiences. They were interviewed (remotely) between July 2020 and April 2022 using a semi-structured interview topic guide. RESULTS: Three key themes were identified inductively from our analysis including: (1) Under threat: The ability to speak up or not; (2) Risk tolerance and avoidance: Consequences of speaking up; and (3) Deafness and hostility: Responses to speaking up. Nurses reported that their attempts to speak up typically focused on PPE, patient safety and redeployment. Findings indicate that when NHS Trusts and community services initiated their pandemic response policies, nurses' opportunities to speak up were frequently thwarted. CONCLUSION: Accounts presented in this article include nurses' feeling a sense of futility or of suffering in silence in relation to speaking up. Nurses also fear the consequences of speaking up. Those who did speak up encountered a 'deaf' or hostile response, leaving nurses feeling disregarded by their organization. This points to missed opportunities to learn from those on the front line. IMPACT: Speaking up interventions need to focus on enhancing the skills to both speak up, and respond appropriately, particularly when power, hierarchy, fear and threat might be concerned. PATIENT OR PUBLIC CONTRIBUTION: Nurses working clinically during COVID-19 were involved in the development of this study. Participants were also involved in the development of our interview topic guide and comments obtained from the initial survey helped to shape the study design.

A systematic review of the impact of inflammatory bowel disease (IBD) on family members.

BACKGROUND AND AIMS: Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members. METHODS: A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA). RESULTS: 3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well-being in many ways, including their emotional well-being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self-distraction, and self-blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden. CONCLUSIONS: Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio-psycho-social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.

"What Is the Matter With Me?" or a "Badge of Honor": Nurses' Constructions of Resilience During Covid-19.

It has long been known that nursing work is challenging and has the potential for negative impacts. During the COVID-19 pandemic most nurses' working landscapes altered dramatically and many faced unprecedented challenges. Resilience is a contested term that has been used with increasing prevalence in healthcare with health professionals encouraging a "tool-box" of stress management techniques and resilience-building skills. Drawing on narrative interview data (n = 27) from the Impact of Covid on Nurses (ICON) qualitative study we examine how nurses conceptualized resilience during COVID-19 and the impacts this had on their mental wellbeing. We argue here that it is paramount that nurses are not blamed for experiencing workplace stress when perceived not to be resilient "enough," particularly when expressing what may be deemed to be normal and appropriate reactions given the extreme circumstances and context of the COVID-19 pandemic.

Examining service-user perspectives for the development of a good outcome checklist for individuals at clinical high risk for psychosis.

AIMS: Around 15% of patients at clinical high risk for psychosis (CHR-P) experience symptomatic remission and functional recovery at follow-up, yet the definition of a good outcome (GO) in this population requires further development. Outcomes are typically designed and rated by clinicians rather than patients, to measure adverse as opposed to GOs. Here we investigate how CHR-P subjects define a GO, with the aim of developing a checklist that could be used to measure GO in this clinical group. METHODS: A set of GO-focused questions were designed in collaboration with a service-user. CHR-P patients (n = 48) were asked to rate the importance of items that could indicate short-term (1 year) and long-term (5 years) GO. These items were then ranked using the relative importance index (RII). RESULTS: Patients rated improvement in subjective wellbeing (RII = 0.829) and non-specific presenting symptoms (RII = 0.817) amongst the factors most important for indicating GO in the short-term, and improved resilience (RII = 0.879) and negative symptoms (RII = 0.858) as key items for indicating long-term GO. Patients regarded building resilience (RII = 0.842) and having support from mental health services (RII = 0.833) as being protective for their mental health. These measures were included in a preliminary 12-item GO checklist (GO-12) for assessing GO in CHR-P subjects. CONCLUSIONS: Patient-defined measures of GO included items that are not incorporated into conventional measures of outcomes in CHR-P subjects, such as subjective wellbeing and resilience. Integrating patient-defined metrics of GO may improve the assessment of outcomes in the CHR-P population.

Nuclear receptors in the kidney during health and disease.

Over the last 30 years, nuclear receptors (NRs) have been increasingly recognized as key modulators of systemic homeostasis and as contributing factors in many diseases. In the kidney, NRs play numerous important roles in maintaining homeostasis-many of which continue to be unraveled. As "master regulators", these important transcription factors integrate and coordinate many renal processes such as circadian responses, lipid metabolism, fatty acid oxidation, glucose handling, and inflammatory responses. The use of recently-developed genetic tools and small molecule modulators have allowed for detailed studies of how renal NRs contribute to kidney homeostasis. Importantly, while NRs are intimately involved in proper kidney function, they are also implicated in a variety of renal diseases such as diabetes, acute kidney injury, and other conditions such as aging. In the last 10 years, our understanding of renal disease etiology and progression has been greatly shaped by knowledge regarding how NRs are dysregulated in these conditions. Importantly, NRs have also become attractive therapeutic targets for attenuation of renal diseases, and their modulation for this purpose has been the subject of intense investigation. Here, we review the role in health and disease of six key renal NRs including the peroxisome proliferator-activated receptors (PPAR), estrogen-related receptors (ERR), the farnesoid X receptors (FXR), estrogen receptors (ER), liver X receptors (LXR), and vitamin D receptors (VDR) with an emphasis on recent findings over the last decade. These NRs have generated a wealth of data over the last 10 years that demonstrate their crucial role in maintaining normal renal homeostasis as well as their capacity to modulate disease progression.

Towards a framework for good outcome in people at clinical high risk for psychosis: A Delphi consensus study.

BACKGROUND: Outcomes in people at clinical high risk for psychosis (CHRP) have usually been defined in terms of psychosis onset. However, within the subgroup of individuals who do not develop psychosis, some have persistent symptoms; while in others, symptoms resolve and functioning is restored. Currently, little is known about what predicts a good outcome (GO) in CHR-P individuals, partly because there is no consensus on how this should be defined. METHOD: The Delphi method was used to elicit the opinions of 46 experts to reach a consensus on factors that together could define GO in the CHR-P population. Three online surveys were implemented. The panel rated each survey item according to how important they thought it was as a measure of GO. Participants also answered open-ended questions on how GO should be determined, their responses were subject to content analysis. RESULTS: Ninety-eight items were endorsed by 80% of the panel as essential or important for a GO; these fell into 4 domains: Functioning; Symptoms; Distress/Suicidality; and Subjective Wellbeing. The individual item that was rated as the most important, was daily functioning. Themes emerged from the qualitative data, which corresponded to the Delphi domains, including 'functioning'; 'clinical factors; and 'user-defined outcomes'. CONCLUSIONS: A GO in CHR-P subjects can be defined by using a combination of measures from domains that reflect level of functioning; symptoms; distress/suicidality; and subjective wellbeing. These results provide a basis for a standardised definition of good outcome in people at clinical high risk of psychosis.

Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their Views and Experience of Facilitating Multi-Family Discussion Groups.

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors' professional development.

Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study.

PURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child's future decision-making. METHOD: This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people's decision making. RESULTS: Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children's future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people's perceptions of prophylactic procedures, which were already influenced by cultural understandings of the 'desirable body' and increasing acceptance and proliferation cosmetic surgery. CONCLUSION: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people's understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.

Clinical handovers between prehospital and hospital staff: literature review.

BACKGROUND: Clinical handover plays a vital role in patient care and has been investigated in hospital settings, but less attention has been paid to the interface between prehospital and hospital settings. This paper reviews the published research on these handovers. METHODS: A computerised literature search was conducted for papers published between 2000 and 2013 using combinations of terms: 'handover', 'handoff', 'prehospital', 'ambulance', 'paramedic' and 'emergency' and citation searching. Papers were assessed and included if determined to be at least moderate quality with a primary focus on prehospital to hospital handover. FINDINGS: 401 studies were identified, of which 21 met our inclusion criteria. These revealed concerns about communication and information transfer, and themes concerning context, environment and interprofessional relationships. It is clear that handover exchanges are complicated by chaotic and noisy environments, lack of time and resources. Poor communication is linked to behaviours such as not listening, mistrust and misunderstandings between staff. While standardisation is offered as a solution, notably in terms of the use of mnemonics (alphabetical memory aids), evidence for benefit appears inconclusive. CONCLUSIONS: This review raises concerns about handovers at the interface between prehospital and hospital settings. The quality of existing research in this area is relatively poor and further high-quality research is required to understand this important part of emergency care. We need to understand the complexity of handover better to grasp the challenges of context and interprofessional relationships before we reach for tools and techniques to standardise part of the handover process.

A systematic review of men's experiences of their partner's mastectomy: coping with altered bodies.

OBJECTIVE: To explore men's experiences of their partner's altered physique and body image as a result of mastectomy and subsequent reconstructive surgeries. DESIGN: A systematic review of qualitative and mixed-methods studies. DATA SOURCES: Ovid, EBSCOhost, Web of Science, SCOPUS and ASSIA ProQuest databases were searched using 1) truncations of breast cancer, hereditary breast cancer and BRCA 2) words relating to partner relationships; spouse, husband, partner, men and couple 3) breast cancer surgeries; mastectomy, prophylactic mastectomy and breast reconstruction and 4) body image. REVIEW METHOD: Methodological rigour was quality assessed. RESULTS: A total of 756 citations were retrieved. Seventeen articles remained following the removal of duplicates, papers unrelated to breast cancer, male breast cancer, papers that excluded men's experiences of their partner's breast cancer and altered body image. Thematic analysis was applied and produced five themes: experiences of the altered body, communication, impact on relationship, information giving and recommendations. CONCLUSION: Men indicated that perceptions of their partner's altered physique and body image, following mastectomy, was secondary to their health. Some men were distressed by their partner's bodily alterations leading to highly complex and emotive coping mechanisms. Men found talking to their partner about physique and body image challenging. Closed communication, however, often led to conflict and poor psychological well-being in both partners. To help prepare for the changes to their partner's body, men desired tailored information. Effective information giving contributes to effective coping strategies helping men to better support their partner affected or at risk from breast cancer, leading to enhanced psychological and emotional well-being in couples.

Communicating inherited genetic risk between parent and child: a meta-thematic synthesis.

OBJECTIVES: Communicating genetic risk is a distressing process for families affected by inherited genetic conditions. This systematic review identifies and explores the challenges faced by parents and their (non)affected or at risk children caused by the (non)disclosure of genetic risk information. DESIGN: Qualitative meta-synthesis and thematic analysis. DATA SOURCES: Ovid databases; Ovid 'in progress', British Nursing Index, Embase, Medline and Psychinfo were combined with searches of EBSCOhost databases; CINAHL and ERIC and Web of science and ZETOC databases using truncations of communication, chronic illness and disease and words relating to family with specific genetic conditions; Cystic Fibrosis, Duchenne Muscular Dystrophy, Familial Adenomatous Polyposis, Hereditary Non-polyposis Colorectal Cancer, Huntington's Disease, Neurofibromatosis and Sickle Cell Anaemia. This was augmented with free Internet and hand searches and an exploration of the bibliographies of all included papers. REVIEW METHOD: All papers were quality assessed to ascertain their research quality and methodological rigour. RESULTS: A total of 2033 citations were retrieved. Following the removal of duplicates, irrelevant articles and the application of an inclusion criterion, 12 articles remained. A further three papers were omitted due to poor quality leaving nine papers which focussed on the disclosure of genetic information between parent and child (<18 years). Eight papers were qualitative in design and one used a mixed method approach. Thematic synthesis produced four themes that inform the structure of the paper; disclosure, emotions involved in disclosure, desired disclosure and recommendations. CONCLUSION: Disclosure of genetic risk information within families is a highly complex and affective process often resulting in delayed disclosure. This can lead to increased family tensions generated by misunderstanding, blame and secrecy. Early, age appropriate disclosure can better prepare children for future considerations such as care planning and reproductive decision-making. It also contributes to effective coping strategies that promote enhanced adaptation and emotional well being. Early disclosure also reduces parental anxieties concerning disclosure from an unwitting source. Research shows that children and young people want their parents to engage in open and honest discussions about the genetic condition. Therefore to help facilitate effective family communication health professionals should provide family centred care and better emotional and informational support.

Research ethics in accessing hospital staff and securing informed consent.

Qualitative researchers cannot rely on research ethics to be a static practice. In this article we discuss how observation of guidelines for inquiry and international agreements on the dignity of health care research are not sufficient on their own to ensure that the challenges inherent in the everyday management of a project are regulated. We focus in particular on ethics in accessing participants and the construction of informed consent. During our study, important contrasts emerged between the ideal presented for the standard ethics review process and practical ethics. As a result, we focused on building open communication with the participants through rigorous project management. We analyzed the data and wrote this article collaboratively to represent the empirical reality of a team of researchers aiming to take ethical challenges seriously while collecting data in three National Health Service Trusts in the United Kingdom.