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Background: Total laryngectomy (TL) results in permanent functional changes requiring rapid development of complex new skills. A significant portion of this learning happens in the acute post‐surgical stage. There is increasing interest in enhanced recovery after surgery (ERAS) protocols in TL; however, implementation has been difficult. COVID‐19 has placed significant pressures on acute services, requiring rapid service changes for TL patients. Aims: To understand the acute patient experience of having a TL both before and during COVID‐19. Methods & Procedures: Semi‐structured interviews using a pre‐designed topic guide were conducted with 10 people who had undergone a TL within the last 2 years. Participants were recruited by their speech and language therapists using purposive sampling. Braun and Clarke's iterative approach to data collection and thematic analysis was used to generate key themes from the data. Outcomes & Results: Thematic analysis identified four main themes: (1) pre‐operative information‐giving: 'it was just words'; (2) decision‐making influences: 'I just wanted them to get it all out and get it over with'; (3) coping with adjustment to the new normal: 'this is part of me now'; and (4) the importance of relationship‐building: 'when you've had something like this, you need some care and understanding'. Conclusions & Implications: The need for an individualized approach to TL intervention which incorporates medical and psycho‐social approaches from pre‐treatment to acute discharge is vital. ERAS models should be reviewed to shift beyond the medical model alone. Rapid service changes due to COVID‐19 did not contribute any major changes to the acute patient‐reported experience. What this paper adds: What is already known on the subject: We know that ERAS protocols have the potential to improve patient outcomes following TL. However, the research does not consider anything other than the early oral feeding debate and it has therefore been difficult to implement ERAS protocols in current service models. COVID19 required head and neck cancer services to make quick changes to surgical pathways, with the potential that some ERAS protocols had been adopted inadvertently. In order to understand the impact of this, we need to understand the patient experience following TL both before and during COVID19. What this paper adds to existing knowledge: This paper used qualitative interviews to understand the acute patient experience following TL both during and before COVID19. Findings from these interviews highlighted that people were on the most part, well prepared for the functional changes they would experience after surgery. However, people felt there were gaps in service delivery at the pre‐treatment and early discharge home period. Overall, the gaps identified were from a more psycho‐social need suggesting that future ERAS models of care should consider both medical and psycho‐social principles to enhance patient experience and outcome. What are the potential or actual clinical implications of this work?: Pre‐treatment services provided to people who have a TL could be reviewed to help maximize long‐term adjustment to life. Areas which could be reviewed include the method and mode of information delivery. Further work needs to be done in partnership with community services to improve the immediate discharge home experience. [ABSTRACT FROM AUTHOR]

Aim: The aim of this research was to provide an in‐depth study about the life experiences of patients with inflammatory bowel diseases. Methods: The phenomenological (hermeneutic) method was used to analyse data. The data were collected between March 25 and July 1, 2019. A homogeneous group of 25 patients were included as participants by purposeful sampling methods. Interviews were conducted in the hospital patient‐education room. Results: The results of this study emphasize the importance of understanding the fears, worries, difficulties and life experiences of patients with inflammatory bowel diseases. Three main themes were identified: a flare phase of the disease, a remission period and coping behaviours. Study findings included the experiences of social isolation; inability to perform daily activities of living and to work; stress in the flare phase of the disease; concerns about the future in the remission phase and physical and spiritual strategies used for coping. Conclusion: Coping with the physical symptoms and emotional difficulties of inflammatory bowel diseases can prevent patients from living a normal life. The results of this article highlight the importance of understanding the fear, anxiety, difficulties and life experiences of these patients. Summary statement: What is already known about the topic? Some research on inflammatory bowel disease exists, but patient experiences differ.IBD patients may not be able to maintain a normal life due to the effects of the disease. What does this paper add? It enables nurses to know and understand the life experiences of IBD patients. The implications of this paper: Knowing and understanding the experiences of IBD patients, nurses can provide personalized care and support tailored to each patient's needs and concerns [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject?: The delivery of mental health recovery orientated acre is a requirement of mental health professionals and an acknowledged desired outcome for individuals presenting with mental health issues.Hope has been recognized as one of 5 key processes of mental health recovery, and critically as the key catalyst of recovery.Mental health nurses are required to be competent in cultivating service user hope. What the paper adds to existing knowledge?: Novel exploration of how people described and made sense of the lived experience of hope in mental health recovery.Participants described hope as intrinsic to life in the context of its ability to cultivate desire and provide energy for life and living.Participants with experience of attempts to end life had a very clear concept of hope as missing at these times.Participants described the concept of hope as present but hidden to explain their survival through tortuous circumstances.The themes generated contribute to a greater understanding of the dynamic role and process of hope in mental health recovery. What are the implications for mental health nursing practice?: Mental health practitioners need to be competent in understanding and cultivating hope as part of a person‐centred approach, embedded in a therapeutic relationship.All stakeholders including service users, mental health nurses and educators need a more accessible reified dialogue of "hope" that harnesses its therapeutic potential. Introduction: Mental health services have embraced the philosophy and practice of recovery. Research has confirmed hope as a micro‐process of recovery. The lived experience of hope has received scant attention. This is required to improve understanding and optimize its therapeutic potential. Aim: To explore how individuals describe and make sense of their experience of hope in mental health recovery. Method: A qualitative interpretative phenomenological analysis (IPA) approach was used. The sample was accessed via email networks. Data were generated through semi‐structured interviews and analysed using an IPA framework. Results: Three superordinate themes emerged: "Without it we would wither up and die"—Hope as intrinsic to life; "I will be ok"—Having a sense of possibility and "Making it happen"—Moving forward. Individuals referenced hope by its absence when attempts were made to end life, and as present but hidden in tortuous circumstances. Discussion: Individuals were more familiar with the concept of hopelessness, had a ready‐to‐hand vocabulary of "having no hope" and used this by default to inform what hope meant. Implications for Practice: It is important that all stakeholders appreciate the context specific interpretation of hope and cultivate dialogue and understanding to harness its therapeutic potential. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Arthritis affects many individuals and can cause pain and limit physical functioning. Exercise is an important treatment option for individuals with arthritis; however, adherence to exercise programs can be challenging. A new initiative in Denmark has introduced nature-based exercises for patients with arthritis. This qualitative study aimed to explore the experiences of the individuals who participated in those exercises. The study used a hermeneutic-phenomenological approach and conducted along-side interviews with 12 women and three men who participated in nature-based exercise programs for arthritis. Analysis of the data revealed two main themes. The first theme highlighted the positive effects of being in nature, such as increased vitality, reduced pain, and a sense of well-being. The second theme emphasized the social benefits of participating in these exercises, including a sense of connection and community with others. Overall, this study suggests that incorporating nature-based exercises in treatment programs for arthritis could have significant benefits for individuals with this condition. [ABSTRACT FROM AUTHOR]

Objectives: Patient reported experience measures (PREMs) are tools often utilised in hospitals to support quality improvements and to provide objective feedback on care experiences. Less commonly PREMs can be used to support consumers choices in their hospital care. Little is known about the experience and views of the Australian consumer regarding PREMs nor the considerations these consumers have when they need to make decisions about attending hospital. This study aimed to explore consumer awareness of PREMs, consumer attitudes towards PREMs and the utility of PREMs as a decision-making tool in accessing hospital care. Methods: Qualitative study involving semi-structured interviews conducted over the phone. Participants (n = 40) were recruited from across Australia and purposively sampled according to key characteristics: holding private health insurance, > 30-years of age, may have accessed private hospital care in the past year, variety of educational and cultural backgrounds, and if urban or rural residing. Interviews were audio-recorded, transcribed, and analysed thematically. Results: Four overarching themes and six subthemes were identified from the data. Major findings were that prior awareness of PREMs was limited; however, many had filled in a PREM either for themselves or for someone they cared for following a hospital stay. Most respondents preferred to listen to experience of self or family/friends or the recommendation of their physician when choosing a hospital to attend. Participants appeared to be more interested in the treating clinician than the hospital with this clinician often dictating the hospital or hospital options. If provided choice in hospital, issues of additional costs, timeliness of treatment and location were important factors. Conclusion: While PREMs were considered a possible tool to assist in hospital decision-making process, previous hospital experiences, the doctor and knowing up-front cost are an overriding consideration for consumers when choosing their hospital. Consideration to format and presentation of PREMs data is needed to facilitate understanding and allow meaningful comparisons. Future research could examine the considerations of those consumers who primarily access public healthcare facilities and how to improve the utility of PREMs. [ABSTRACT FROM AUTHOR]

Background: The survival rate among patients with breast cancer is high. It is well described that after primary treatment patients may experience symptoms and concerns but the needs and resources during the first year to manage everyday life are not well described. Aim: To describe experiences of symptom distress, needs and support during the first year after primary treatment for breast cancer from the perspectives of patients and healthcare professionals. Design: Qualitative descriptive. Methods: Data collection through individual interviews with patients (n = 17) and a focus group interview with healthcare professionals (n = 7). Data was analysed using thematic analysis and resulted in three themes. Results: The first theme, 'Struggling with symptoms and changes in everyday life' shows how symptoms and concerns interfered with the everyday life of patients and in some situations even impeded them. Patients try to adapt to their new situation by creating new routines and managing symptoms through self‐care. The second theme, 'Adaption in a period of uncertainty' describes thoughts about cancer recurrence and doubts about continuing with the endocrine therapy if symptoms prolong. In the third theme, 'Support and need for individualized follow‐up care' healthcare professionals described that they provide support by being available and by giving both verbal and written information. Patients expressed that the information could be too general and voiced a need for more individually tailored support. Conclusion: During the first year after primary treatment, patients with breast cancer describe how they try to manage by themselves, but express both unmet needs and a wish for extended and more individually tailored support. The healthcare professionals recognised that patients lack a structured plan for the first year and the need for continued support. This stresses a need for development of care models with special consideration towards individualised support after breast cancer treatment. No Patient or Public Contribution: There was no patient or public involvement in the design or conduct of the study. The interview study was not considered to benefit from involving patients or healthcare professionals when designing the interview guides as they were developed through literature and previous research of patients treated for breast cancer. [ABSTRACT FROM AUTHOR]

Aim: The centralization of Finnish maternity services can mean longer journeys when women are in labor. The aim of this study was to describe women's experiences of having an unplanned out-of-hospital delivery (OHD) and to produce a deeper understanding of how to support them when this happens. Design: Qualitative descriptive study design with narrative inquiry method. Methods: Individual interviews were carried out with 15 women who had an unplanned OHD and the data were analyzed using a narrative method. Results: Three narratives described the women's experiences of an unplanned OHD with a common plot being their sense of control. In the first narrative, a sense of control was maintained; in the second, the sense of control fluctuated; and the third narrative centered on a loss of control. All the narratives were related to the women's experiences of what was happening to their body, the people around them during delivery, and the situation after the childbirth. Conclusion: Having an unplanned OHD forced women to reconsider their preconceptions and expectations of childbirth and focus on how to handle the situation at hand. A key factor was the sense of control they felt while giving birth, which should be considered a core principle in maternity care practices, from antenatal care to delivery. [ABSTRACT FROM AUTHOR]

Background: To overcome of patients with COVID-19 over the capacity of hospitals and mild to moderate severity of the disease in most cases, the World Health Organization and the Centers for Disease Control and Prevention in the United States, recommend home care for these patients. Receiving care at home will face challenges that can be context-based, especially in crises like the Coronavirus pandemic. The present study aimed to describe the experiences of patients with COVID-19 and their relatives from receiving professional home care nursing. Methods: This study was conducted using a qualitative content analysis method. Nine participants with COVID-19 who were receiving home care nursing in Semnan participated in this study. The purposive sampling method was used. Sampling continued until no new categories appeared, meaning the category's theoretical saturation. Deep and semi-structured interviews were used to collect data based on the research question. Data was analyzed using the conventional content analysis method using Graneheim and Lundman's approach. Results: After analyzing the interviews and comparing codes based on similarities and differences, three main themes, 11 categories, and 30 subcategories were identified. The main themes included "The value of home care" (personalization of care, being economical, providing intellectual security, and reducing the concern of family), "Comprehensive care" (professional commitment, empathy, mastery in care, and patronage), and "Care challenges" (cultural barriers, inadequate services, and lack of information about costs and conditions). Conclusion: The patients with COVID-19 who received professional nursing care at home mentioned some challenges, such as the caregiver not being of the same sex as the patient, delay in receiving the service, the inadequacy of the centers, the limitation of the right to choose the care provider, and insufficient information about the cost of services received before receiving each care. [ABSTRACT FROM AUTHOR]

Internally displaced women are underserved by health schemes and policies, even as they may face greater risk of violence and unplanned pregnancies, among other burdens. There are an estimated 450,000 internally displaced persons in India, but they are not formally recognised as a group. Displacement has been a common feature in India's northeast region. This paper examines reproductive and maternal health (RMH) care-seeking among Bru displaced women in India. The study employed qualitative methodology: four focus group discussions (FGDs) were held with 49 displaced Bru women aged 18–45 between June and July 2018; three follow-up interviews with FGD participants and five in-depth interviews with community health workers (Accredited Social Health Activists – ASHAs) in camps for Bru displaced people in the Indian state of Tripura. All interviewees gave written or verbal informed consent; discussions were conducted in the local dialect, recorded, and transcribed. Data were indexed deductively from a dataset coded using grounded approaches. Most women were unaware of many of the RMH services provided by health facilities; very few accessed such care. ASHAs had helped increase institutional deliveries over the years. Women were aware of temporary contraceptive methods as well as medical abortion, but lacked awareness of the full range of contraceptive options. Challenges in accessing RMH services included distance of facilities from camps, and multiple costs (for transport, medicines, and informal payments to facility staff). The study highlighted a need for comprehensive intervention to improve RMH knowledge, attitudes, and practices among displaced women and to reduce access barriers. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Nursing Effect / Etkili Hemşirelik Dergisi is the property of Dokuz Eylul Universitesi Hemsirelik Fakultesi Elektronik Dergisi and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Background: Vulvodynia is a poorly understood chronic pain condition characterized by persistent and unexplained pain in the vulva. Given the intimate nature of the pain, partners may play an important role in promoting self-management and help-seeking behaviours among women with vulvodynia. Objectives: The current study aimed to explore the role of partner support in pain experiences and help-seeking behaviours among women with vulvodynia. Design: A qualitative interpretive design was used. Methods: Ten women with vulvodynia (M age = 37.9 years) were interviewed using a semi-structured non-directive topic guide. Data were analysed using reflexive thematic analysis. Results: Three themes around help-seeking experiences were constructed from the data: (1) 'It's Been a Battle' – Failed by the Healthcare System; (2) 'It's Just the Vulva' – Dismissed by Healthcare Professionals; and (3) 'I Diagnosed Myself' – The Patient Becomes the Expert. Participants described negative help-seeking experiences characterized by long delays to diagnosis, lack of awareness and understanding from healthcare professionals, minimization of symptoms, and having to advocate for and demand care. A further three themes pertaining to partner support were also developed: (1) 'That Person to Listen to You' – Source of Emotional Support; (2) 'Why Don't You Try This?' – Finding Solutions Together; and (3) 'He Forgets that it's Still There' – Vulvodynia is a Foreign Concept. Partners provided emotional support and showed empathy and understanding, and practical support by accompanying women to medical appointments and help with pain management. However, participants felt partners' understanding of vulvodynia was limited and that this impacted their relationships. Conclusions: Findings highlight a lack of continuity of care and multidisciplinary approach to treatment, with help-seeking experiences being mainly negative in this sample. Increasing public awareness of vulvodynia and improving healthcare access is crucial to improving physical and psychological outcomes for this group. Partners can play an important role in supporting people with vulvodynia; however, other outlets of support should be further explored. Plain Language Summary: Understanding How Women with Vulvodynia Seek Help and Get Support from Their Partners Vulvodynia is a condition where women experience persistent and unexplained pain in the vulva. This pain can be quite personal and difficult to deal with. In this study, we wanted to understand how partners of women with vulvodynia help them cope with the pain and seek medical help. We interviewed 10 women with vulvodynia about their experiences of accessing healthcare for their symptoms, and how their partners affected these experiences. Many women faced challenges when seeking medical help, like delays in getting a diagnosis, healthcare professionals not understanding their condition, and their symptoms being downplayed. Women often had to be their own experts and advocate for their care. Partners of these women provided emotional and practical support, like going with them to medical appointments and helping them to manage the pain. However, some women felt their partners did not fully understand vulvodynia, and their worries sometimes strained their relationships. In conclusion, the study showed that there is a need for better healthcare for women with vulvodynia, including more awareness and easier access to treatment. Partners can be supportive, but other forms of support, for example, from friends, family, and other people with experience of vulva pain, should also be explored. [ABSTRACT FROM AUTHOR]

Aim: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. Design: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. Methods: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. Results: Four themes were identified: Sexuality as lived incompleteness was the over-arching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. Conclusions: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. Impact: • First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. • Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. • A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. Patient or Public Contribution: Patients were involved in the study design. [ABSTRACT FROM AUTHOR]

Endometriosis is an incurable chronic condition associated with debilitating pain and subfertility, affecting 1 in 10 women. The current study aims to explore the perceptions and experiences of women with endometriosis regarding the diagnosis, support and treatment options available in Ireland. It will further determine whether additional supports or improvements are needed to care well and effectively for women with this disease in the Irish healthcare system. A qualitative study design was deemed most suitable. Twenty participants, women aged 18 and over with a diagnosis of endometriosis and experience of the Irish healthcare system, were recruited through purposeful sampling to complete semi-structured, one-to-one online interviews. Data was analysed using reflexive thematic analysis, and five themes were identified: 'dismissive attitudes normalising severe pain', 'inadequate health system', 'the impact of delayed diagnoses', 'lack of education and awareness' and 'navigating ignorance, taboo and societal views'. Insights into the experiences and needs of women diagnosed with endometriosis in Ireland were gained, and we discuss the implications of our findings for Irish healthcare services with reference to feminist health equity and recent national action plans. We propose a series of recommendations for patient-centred care models including increased access to training and education, as well as support for longer-term chronic pain management. [ABSTRACT FROM AUTHOR]

Aim: The idiographic case study aimed to explore the trust of a person with chronic pancreatitis in healthcare professionals. Design: An interpretive phenomenological idiographic case study. Methods: Data collection was carried out through a semistructured in-depth interview with a 29-year-old man with chronic pancreatitis. The purposive sampling of the participant was carried out according to feasibility criteria. Interpretative phenomenological analysis was used with the assistance of Atlas.ti 9 for data analysis. Results: Five interconnected personal experiential themes reflecting the trust of the participant in healthcare professionals were identified: Trust in healthcare professionals as an inner feeling; Active and partnership approach of healthcare professionals; Paternalistic approach and lack of interest of healthcare professionals in the patient; Expertise of healthcare professionals; and Linking trust in health professionals with the hospital ward environment, with 22 experiential statements. Conclusion: The participant considered trust to be an internal feeling of expectation that healthcare professionals would help him actively solve his health problems. The findings promote the implementation of patient-centered care and the partnership approach in the care of patients with chronic pancreatitis. The personal experience themes identified provide information for further qualitative research aimed at a deeper understanding of the lived experience of trust for patients with chronic pancreatitis. [ABSTRACT FROM AUTHOR]

Copyright of Balikesir Health Sciences Journal / Balıkesir Sağlık Bilimleri Dergisi is the property of Balikesir Health Sciences Journal (BAUN Health Sci J) and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved. Methods: A qualitative design was employed, using semi-structured interviews. Participants (N = 47) included people with young onset dementia (n = 10), family members (n = 12), and health and social care professionals (n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups. Results: All participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia). Conclusion: Many people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a 'pre-disclosure' appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-altering diagnosis, a disclosure meeting which is sensitively undertaken can increase the person's agency, coping ability, and ultimately empower them to live well with their diagnosis. [ABSTRACT FROM AUTHOR]

Background. The expansion of COVID-19 and its unique transmission speed created an emergency situation in global health. This disease not only causes public health concerns but also has many psychological consequences for patients. In this situation, maintaining the mental health of individuals is essential. Therefore, focusing on the human aspects of the threat perceived by patients could lead the way for the provision of empathetic and effective care. Objectives. The aim of this study was to investigate the perspectives and experiences of patients with COVID-19. Material and methods. In this qualitative study, 27 patients with COVID-19 were purposefully selected and interviewed in semi-structured in-depth manner. Interviews continued until data saturation. All interviews were recorded and analysed using the MAXQDA 10 software and the contractual content analysis method via the Graneheim and Lundman approach. The accuracy and robustness of the research was obtained based on Guba and Lincoln criteria. Results. The codes extracted from the interviews led to the emergence of two main themes including “negative emotions” and “sense of cohesion” and five categories of stigma experience, psychological distress, perceived threat, positive perception and spirituality. Conclusions. Individuals experience critical crises in the face of stressful life events, including COVID-19, from negative emotions to psychological adjustment. Going through the crisis stage and achieving stability and peace requires a change of attitude towards everything around the person and the use of spiritual forces to achieve adaptation. [ABSTRACT FROM AUTHOR]

Aims: To longitudinally explore the symptom experience of Chinese patients with Crohn's disease within the first year following their diagnosis. Design: A longitudinal qualitative study. Method: Eighteen newly diagnosed Chinese patients with Crohn's disease were recruited through purposive sampling. Semi‐structured interviews were conducted at four time points: soon after diagnosis, 3, 6 and 12 months post‐diagnosis. Data were collected between January 2021 and February 2022. Conventional content analysis was used for data analysis of each time point. Afterwards, the data of each time point were compared longitudinally. COREQ checklist was followed. Results: Three themes and eight sub‐themes were formed through analysis: feelings towards symptoms (symptoms make me feel uneasy, symptoms make me feel inferior and symptoms make me feel helpless); acceptability of symptoms (difficult to accept, have to accept, be able to accept); functions of symptoms (assessing disease conditions and treatment effects, warning of disease management). Conclusions: Overall, the negative emotions related to symptoms gradually decreased over time, and the patient's acceptance of symptoms increased within the first year following diagnosis. In addition, when the disease was in remission after treatment, the warning function of symptoms gradually weakened. Impact: The process of how patients accept their symptoms found in this study provides a basis for nurses to improve patients' acceptance of symptoms and reduce their symptom‐related negative emotions. This study also emphasizes the phenomenon that patients gradually ignore some symptoms with their increased acceptance level, which warrants additional health education to strengthen their awareness of self‐management. Patient or public contribution: No patient or public contribution was required to design or undertake this study. Patients contributed only to the data collection and member checking. [ABSTRACT FROM AUTHOR]

Introduction: Head and neck cancer (HNC) is the eighth most common cancer in the United Kingdom. Survival rates improve when the cancer is diagnosed at an early stage, highlighting a key need to identify at‐risk patients. This study aimed to explore opportunistic HNC identification and referral by community pharmacists (CPs) using a symptom‐based risk assessment calculator, from the perspective of patients with a diagnosis of HNC. Methods: Purposive sampling was used to recruit patients from the HNC pathway in three large teaching hospitals in Northern England. Qualitative methodology was used to collect data through an iterative series of semistructured telephone interviews. Framework analysis was utilised to identify key themes. Results: Four main themes were constructed through the analytic process: (1) HNC presentation and seeking help; (2) the role of the CP; (3) public perception of HNC and (4) the role of a symptom‐based risk calculator. Participants agreed that CPs could play a role in the identification and referral of suspected HNCs, but there were concerns about access as patients frequently only encounter the medicine counter assistant when they visit the pharmacy. HNC symptoms are frequently attributed to common or minor conditions initially and therefore considered not urgent, leading to delays in seeking help. While there is public promotion for some cancers, there is little known about HNC. Early presentation of HNC can be quite variable, therefore raising awareness would help. The use of a symptom‐based risk calculator was considered beneficial if it enabled earlier referral and diagnosis. Participants suggested that it would also be useful if the public were made aware of it and could self‐assess their symptoms. Conclusion: In principle, CPs could play a role in the identification and referral of HNC, but there was uncertainty as to how the intervention would work. Future research is needed to develop an intervention that would facilitate earlier identification and referral of HNC while not disrupting CP work and that would promote HNC and the risk calculator more widely. Patient or Public Contribution: Patient and public involvement and engagement (PPIE) was integrated throughout the project. Initially, the proposal was discussed during a Cancer Head and Neck Group Experience (CHANGE) PPIE meeting. CHANGE was set up to support HNC research in 2018. The group is composed of seven members (four female, three male) with an age range of 50–71 years, who were diagnosed at Sunderland Royal Hospital. A patient representative from the University of Sunderland PPIE group and a trustee of the Northern HNC Charity were recruited as co‐applicants. They attended project management group meetings and reviewed patient‐facing documentation. [ABSTRACT FROM AUTHOR]

Aims and objectives: Explore the parent and child/young person experience of difficult venous access and identify ideas and preferences for changes to clinical practice. Background: Peripheral intravenous catheter insertion is one of the most common invasive procedures in hospitalised paediatric patients. Multiple insertion attempts in paediatric patients are common and associated with pain and distress. Little research has explored the parent and child/young person experience of difficult venous access nor sought to identify their suggestions to improve clinical practice. Design: Qualitative description. Methods: A purposive sampling approach was used to identify children and young people with experience of difficult venous access and their parents. Semi‐structured interviews were conducted, with sample size based on data saturation. Transcripts were analysed using thematic analysis. Results: There were 12 participants, seven parents and five children/young people (five parent/child dyads and two individual parents). Analysis of the data revealed three main themes: (1) Distress—before, during and after (2) Families navigating the system: the challenging journey from general clinician to specialist and (3) Difficult venous access impacts both treatment and life outside the hospital A pre‐determined theme, (4) Recommendations for good clinical practice is also described. Conclusions: Multiple attempts to insert a peripheral intravenous catheter are a source of substantial distress for children/young people, leading to treatment avoidance. Effective interpersonal skills, providing choice and avoiding frightening language are important to minimise distress. Clinicians without specialist training should assess each child's venous access experience and consider immediate referral to a specialist if they have a history of difficult venous access. Cultural change is required so clinicians and healthcare services recognise that repeated cannulation may be a source of psychological distress for children/young people. [ABSTRACT FROM AUTHOR]

BACKGROUND: Acquired brain injury (ABI) is an important public health problem. Individuals with ABI experience greater challenges with community reintegration and successful return to work (RTW) due to both personal and environmental factors. Empirical evidence has shown that women with brain injury are vulnerable to poorer functional outcomes and have demonstrated lower RTW rates post-injury. Therefore, further research is needed to gain greater insight on women with acquired brain injury's functional and work abilities as well as their experiences of RTW and entrepreneurial skills development. OBJECTIVE: This study aimed to explore and describe women with acquired brain injury's experiences during their rehabilitation process, their resumption of their worker role, and entrepreneurial skills development. This qualitative exploration formed part of a study that resulted in an occupational therapy practice model to enhance the entrepreneurial skills of women with acquired brain injury living in the Cape Metropolitan, Western Cape, South Africa. METHODS: Semi-structured interviews were conducted with ten females with acquired brain injury. A qualitative approach was employed to thematically analyse the data. RESULTS: Three themes emerged from the study: (1) Barriers within the rehabilitation process, 2) ABI causes loss of a sense of self and financial strain, 3) Entrepreneurship and education as a strategy to empowerment. CONCLUSION: Unmet individual needs related to occupational engagement results in RTW challenges for women with ABI. ABI sequelae cause activity limitations and hinder gainful occupational participation. A holistic client-centred entrepreneurial skills development approach is a viable and needed strategy to facilitate economic empowerment for women with ABI. [ABSTRACT FROM AUTHOR]

Background: Patients with schizophrenia in rural areas of China face severe delays in getting appropriate treatment due to poverty, transportation, and limited availability of mental healthcare services. However, the experiences of care-seeking among patients with delayed diagnosis and treatment in rural areas remain poorly understood, and it remains unclear how these experiences influence patients' medical mistrust or expectations of care. This study aims to fill that void. Methods: We applied a qualitative phenomenological method. Patients were recruited through purposive sampling at a psychiatric hospital in Harbin, China. Semi-structured, one-to-one interviews were conducted, guided by an interview outline. Thematic analysis was performed using Colaizzi's seven-step method. Results: Data saturation was achieved after interviewing 13 participants aged 21 to 53 years. Three themes with eight subthemes were identified: (i) Barriers to seeking care, (ii) Feelings for psychiatric treatment, and (iii) Demand for mental healthcare. Several factors that may impede the timely diagnosis and treatment were identified, including patients, physicians, and institutions. The participants described their feelings of adverse treatment experiences, as well as expectations arising from this process. It predominantly covers awareness of the disease, supportive access to care, and geographic accessibility of services. Conclusion: Patients with delayed diagnosis and treatment in rural areas often have negative experiences and various needs for mental health services in the pursuit of effective treatments. Policymakers and health planners should seriously consider the current challenges in rural mental healthcare to develop comprehensive strategies for improving prehospital delays and medical experience for this group of patients. [ABSTRACT FROM AUTHOR]

Instability in the lives of young people in care is a public health concern. Placement moves and loss of relationships can have serious implications for young people's overall functioning, as well as their future life outcomes. Despite this, research often lacks the perspective and voice of young people in care. In this qualitative research, Interpretative Phenomenological Analysis was used to provide a deeper insight into young people's perceptions and beliefs about their care experiences to explore the impact of these on their ability to achieve a sense of stability and permanency across time. Semi-structured interviews were conducted with six males from UK foster, residential and semi-independent care homes. The main themes highlighted young people's perceptions of their care environment, relationships with others, sense of self and future under the overarching issue of permanence. Policy and practice implications propose strategies to target instability at the micro-level and how that may facilitate positive outcomes. The study revealed insights that may be helpful for frontline professionals and highlight to policy makers the importance of ensuring environmental and relational stability. An awareness of attachment theory to implement effective caregiving, should be a priority for training parents, caregivers, professionals and policy makers. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to understand how people living with Parkinson's and healthcare professionals perceived their care management and interactions with health services were affected during the COVID‐19 pandemic. Background: During the COVID‐19 pandemic, many governments introduced restrictions and services that support Parkinson's care management had to cease or be delivered remotely. These changes may have had an impact on the well‐being of people living with Parkinson's. Methods: A qualitative exploratory UK study was carried out. Semi‐structured individual interviews with people living with Parkinson's and health professionals were recorded, transcribed verbatim and analysed using Braun´s and Clarke´s thematic analysis. Eleven patients and 10 health professionals were recruited between April and September 2020. The study was reported using the COREQ. Results: Two main themes were identified. In the first theme, many patients and professionals reported that the COVID‐19 pandemic made some people living with Parkinson's feel isolated and vulnerable due to disruptions to their social networks and usual activities related to Parkinson's disease care. However, other patients remained connected with their networks. In the second theme, patients and most professionals mentioned that some clinical practices were cancelled, delayed or transformed to remote consultation. Conclusion: The COVID‐19 restrictions had an impact on how people living with Parkinson's managed their care and in their interactions with healthcare services. Health professionals should assess the risk of vulnerability, social isolation, physical inactivity and confidence with remote consultations in people living with Parkinson's. This might inform a rethinking of existing clinical interactions with people living with Parkinson's towards a flexible, sustainable, person‐centred care model. Relevance to clinical practice: This study has shown that Parkinson's care management and interactions with healthcare services should provide personalised and flexible support. To meet this challenge, the design of the organisation of health services should include greater involvement of patients and person‐centred care models. [ABSTRACT FROM AUTHOR]

Older adults are a major Emergency Department (ED) user group who may be especially vulnerable to the consequences of crowding and sub-optimal care. Patient experience is a critical component of high-quality ED care and has previously been conceptualised using a framework focusing on patients' needs. This study aimed to explore the experiences of older adults attending the ED in relation to the existing needs-based framework. Semi-structured interviews were conducted during an emergency care episode with 24 participants aged over 65 years in a United Kingdom ED with an annual census ~100,000. Questions exploring patient experiences of care confirmed that meeting the communication, care, waiting, physical, and environmental needs were prominent determinants of experience for older adults. A further analytical theme emerged which did not align to the existing framework, focused on 'team attitudes and values'. This study builds on existing knowledge relating to the experience of older adults in the ED. In addition, data will also contribute to the generation of candidate items for the development of a patient reported experience measure for older adults attending the ED. [ABSTRACT FROM AUTHOR]

The aim of this study is to critique and extend psychological approaches to resilience by examining retrospective accounts of LGBT people in England who had directly experienced or witnessed events that were salient as significantly negative or traumatic. Pre-screening telephone interviews identified ten individuals who matched inclusion criteria (mean age: 39 years; range 26–62 years) as part of a larger study. Interviews were semi-structured and informed by a literature review undertaken at the start of the study. We identified three themes of that extend the resilience literature for LGBTQ+ people: (1) identifying and foregrounding inherent personal traits – how non-contextual inborn qualities or attributes needed external effort to be recognised and operationalised; (2) describing asymmetric sources of social support and acceptance – the importance of positive environment is unequally available to LGBT people compared to heterosexuals, and uneven within the LGBT group; and (3) blurring distinctions between resilience and coping – experiential approaches to moving beyond distress. We suggest that narratives of resilience in the accounts of LGBT people can inform the development of resilience promotion models for minoritized individuals and support movement away from deficit-focused approaches to health policy. [ABSTRACT FROM AUTHOR]

Aim: To explore the experiences of living with symptomatic atrial fibrillation. Design: This study, with a descriptive qualitative design, was performed using semi‐structured individual interviews. Method: Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed. Results: The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self‐image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision‐making, were uninformed about self‐care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care. [ABSTRACT FROM AUTHOR]

Abdominal surgery carries with it risks of complications. Little is known about patients' experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants' experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants' experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants' vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants' experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients' concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes. [ABSTRACT FROM AUTHOR]

Aims: To explore the experience of physical restraints during mechanical ventilation in intensive care from the perspectives of patients and family members. Design: This research was a qualitative study with a naturalistic inquiry framework adhering to the Consolidated Criteria for Reporting Qualitative Research guidelines. Method: In‐depth, semi‐structured conversations were conducted with five patients and six family members who had either personally experienced or witnessed their loved ones being physically restrained during mechanical ventilation in intensive care. Data collection occurred between March 2018 and June 2019. These conversations were audio‐recorded and transcribed. Reflexive thematic analysis was used to analyse the data. Results: Three major themes emerged from the data. These themes were: Being tied down; Feeling helpless; and Finding light in the darkness. Conclusion: The experience of physical restraints during mechanical ventilation in intensive care leads to traumatic experiences which can impact patients and families long after their ICU stay. Holistic care, which considers the physical, emotional and psychological needs of patients and families, should be more thoroughly explored when managing treatment interference to minimize harm. Impact This study gained insight into the physical, emotional and psychological consequences of applying physical restraints to patients who are mechanically ventilated as an intervention for preventing treatment interference. The findings of this study have the potential to improve ICU patient and family outcomes by influencing current physical restraint practices. Recommendations from this research can contribute to practice change by informing policy, shifting workplace culture and norms about restraints, and encouraging education and training. [ABSTRACT FROM AUTHOR]

Anxiety during pregnancy is highly prevalent in low‐ and middle‐income countries. The relative importance of different sources and types of perceived support in the Pakistani context is unknown. We explored social support during pregnancy and the role of social isolation in Pakistani women's experiences of antenatal anxiety. We conducted semi‐structured interviews with 19 pregnant women with symptoms of anxiety and 10 female healthcare providers at a public urban hospital. We used inductive and deductive thematic coding to analyse the data. Many pregnant women reported feelings of physical and social isolation, even when living in joint families with larger social networks. Often fearing censure by their in‐laws and peers for sharing or seeking help with pregnancy‐related anxieties, women reported relying on husbands or natal family members. Normative expectations around pregnancy such as male gender preference, perceived immutability of wives' domestic responsibilities and expectations of accompanied travel by women may serve as sources of disconnectedness in the antenatal period. Providers viewed social isolation and deficits in social support during pregnancy as contributing to worse anxiety symptoms, reduced access to care and poorer health behaviours. One limitation is that the hospital setting for this study may have resulted in underreporting of abuse or neglect and limited inclusion of pregnant women who do not utilise facility‐based antenatal care. In conclusion, husbands and natal families were key in reducing social isolation in pregnancy and mitigating anxiety, while in‐laws did not always confer support. Targeted strategies should enhance existing support and strengthen in‐law family relationships in pregnancy. [ABSTRACT FROM AUTHOR]

This qualitative evaluation study examined the impact of unstructured intervention on people with depression in a community mental health centre in Hong Kong. In the intervention, service users initiated groups and designed group activities by themselves, with social workers as facilitators. Semi‐structured interviews were conducted with service users enrolled in unstructured intervention, their family members, and service providers in 2019. Overall, 32 participants were recruited through purposive sampling. The results revealed that peer interactions helped participants to feel accepted and understood. Participants also acquired experience with emotional coping strategies and practised their interpersonal skills, and by learning new skills from peers, they were able to rebuild their self‐esteem and improve their relationships with friends and family. To cater to clients' different needs and concerns, unstructured activities should be diversified. Family and social functioning should also be emphasised in the development of unstructured intervention because the generic skills and knowledge acquired from unstructured activities with peers could help to enhance family relationships, self‐confidence, and the ability to manage issues related to working and socialising. [ABSTRACT FROM AUTHOR]

Background: Low back pain (LBP) is one of the most common reasons for disability globally. Digital interventions are a promising means of supporting people to self-manage LBP, but implementation of digital interventions has been suboptimal. An artificial intelligence-driven app, selfBACK, was developed to support self-management of LBP as an adjunct to usual care. To better understand the process of implementation from a participant perspective, we qualitatively explored factors influencing embedding, integrating, and sustaining engagement with the selfBACK app, and the self-perceived effects, acceptability, and satisfaction with the selfBACK app. Methods: Using a qualitative interview study and an analytic framework approach underpinned by Normalization Process Theory (NPT), we investigated the experiences of patients who participated in the selfBACK randomized controlled trial (RCT). Interviews focused on the motivation to participate in the RCT, experiences of using the selfBACK app, and views about future intended use and potential of using digital health interventions for self-management of LBP. Participants were purposively sampled to represent diversity in age, sex, and implementation reflected by a proxy measure of number of app-generated self-management plans during the first three months of RCT participation. Results: Twenty-six participants aged 21–78, eleven females and fifteen men, with two to fourteen self-management plans, were interviewed between August 2019 and April 2020. A broad range of factors influencing implementation of selfBACK within all constructs of NPT were identified. Key facilitating factors were preferences and beliefs favoring self-management, a friendly, motivational, and reassuring supporter, tailoring and personalization, convenience and ease of use, trustworthiness, perceiving benefits, and tracking achievements. Key impeding factors were preferences and beliefs not favoring self-management, functionality issues, suboptimal tailoring and personalization, insufficient time or conflicting life circumstances, not perceiving benefits, and insufficient involvement of health care practitioners. Self-perceived effects on pain and health, behavior/attitude, and gaining useful knowledge varied by participant. Conclusions: The high prevalence of LBP globally coupled with the advantages of providing help through an app offers opportunities to help countless people. A range of factors should be considered to facilitate implementation of self-management of LBP or similar pain conditions using digital health tools. [ABSTRACT FROM AUTHOR]

Exploring perinatal women's experience of nonfatal suicidal behaviour (NFSB) could help illuminate the contexts in which perinatal suicide occurs and new ways to conceptualise maternal suicide prevention. Our aim was to explore perinatal women's subjective experience of NFSB in South Africa. Data were collected via in-depth interviews with seven perinatal women hospitalised following NFSB. Thematic analysis showed how poverty and gender norms shape experiences of pregnancy and highlighted the need for eco-systemic interventions for perinatal women in resource scarce environments to increase social support, assist with childcare, improve educational retention, challenge gender norms and increase paternal involvement. Pregnancy can precipitate biographical disruption by disturbing women's view of themselves and their futures. An inability to reconstruct a coherent narrative and re-imagine the future impedes the transition to motherhood and provides a context for suicide. Using the concept of biographical disruption to frame perinatal suicide, could identify novel approaches to suicide prevention. [ABSTRACT FROM AUTHOR]

Background: Social participation can be described as engaging in activities that provide interaction with others, and support for social participation may reduce loneliness and improve health. However, there is limited knowledge about social participation in a home care context. Aim: To explore the perceptions and experiences of community-dwelling older adults with regard to aspects related to social participation in a home care context. Materials and methods: Seven home care recipients, aged 79–94 years, from two Swedish municipalities participated in semi-structured interviews. The interviews were analyzed using qualitative content analysis. Results: The study identified the central theme, Personhood in aloneness and in affinity, as important in accomplishing satisfactory social participation. The results incorporated cultivating personal interests and navigating occupations, as well as having one's needs seen and experiencing mutuality in social encounters. Conclusions: The study nuances existing knowledge about social participation among older home care recipients, and the findings strengthen the importance of framing a home care environment where recipients can cultivate personhood and be recognized as valuable individuals with relevant needs. Significance: This study extends current understandings of the variety and richness of the social participation and occupational engagement enjoyed by older home care recipients, to be considered in research and practice. [ABSTRACT FROM AUTHOR]

This study aimed to explore the experiences of adaptation in heart failure (HF) patients according to the Roy adaptation model. A qualitative study was conducted between December 2020 and March 202 I in China. A total of 21 patients with HF were recruited at of two general hospitals. Semi structured face-to-face interviews were conducted with each participant. NVivo I I was used to encode the transcription and thematic analysis was preformed to analyze the transcripts. Eleven minor themes emerged from the data, namely unbalanced nutrition, inappropriate activities, unrestricted liquid intake, excessive sodium intake, worrying about the future, negative emotions, poor spiritual aspect, unable to fulfill social roles, forced to stop work, interpersonal alienation, and less communication with friends or family. Most participants with HF experienced poor disease adaptation. The themes that emerged offer a new perspective on the experiences of disease adaptation in patients with HF. [ABSTRACT FROM AUTHOR]

This study aims to investigate the experiences of survivors of COVID‐19 in Turkey. The research questions and results are structured according to Watson's Theory of Human Caring. The study was conducted using a descriptive qualitative research design. The phenomenological method was used to explore the experiences of survivors of COVID‐19. A total of 34 survivors of COVID‐19 were included in the study. Data were collected using semistructured and open‐ended questions online and via telephone interviews between February and March 2020. Data were evaluated using thematic analysis and descriptive analysis. Six main themes and 25 subthemes were defined that describe the experiences of survivors of COVID‐19 regarding the illness: (a) denial and adaptation, (b) fear, (c) feeling of hopelessness, (d) preventions, (e) meaning attribution, and (f) metaphors about COVID‐19. Information from this research may be used by healthcare professionals to develop new strategies for the care of survivors of COVID‐19. Moreover, it can be said that Watson's Theory of Human Caring is suitable for monitoring the psychosocial development of patients with COVID‐19. [ABSTRACT FROM AUTHOR]

Aim: To explore the experience of people with idiopathic pulmonary fibrosis living through the COVID‐19 pandemic. Design A qualitative descriptive design using semi‐structured interviews. Method: Purposive sampling was employed to recruit 13 participants with idiopathic pulmonary fibrosis attending the respiratory department of a large urban teaching hospital in Limerick, Ireland. Data were collected between January 2021 and February 2021 through semi‐structured interviews, using an online platform. Reflective thematic analysis was used for data analysis. Results: Four key themes were identified from participant's experience of living through the COVID‐19 pandemic: (1) fear of contracting COVID‐19 disease, (2) living with reduced social interaction, (3) the adjustment in the relationship with healthcare professionals (HCP) and (4) navigating an altered landscape. Conclusion: Healthcare professionals have a key role in protecting the physical and psychological health of the person with idiopathic pulmonary fibrosis during this time and into the future. Through being cognisant of the additional supportive care needs of people with idiopathic pulmonary fibrosis, HCP can focus on developing targeted interventions aimed to enhance care provision. Impact This study considers people with idiopathic pulmonary fibrosis as a particularly vulnerable group whose experiences of living through the COVID‐19 pandemic warrant specific attention. Participants felt compelled to self‐isolate due to fear and anxiety of contracting COVID‐19 disease. Participants reported increased social isolation with some experiencing anger and resentment at loss of precious time with loved ones. Participants felt an increased responsibility for self‐monitoring their condition and had concerns about differentiating symptoms of COVID‐19 disease from an exacerbation. A variety of strategies that helped them cope through the pandemic were identified and also the important role these played. The results from this study can be used to inform HCP' understanding of challenges experienced by people with idiopathic pulmonary fibrosis during enforced restrictions related to the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Rapid weight gain is common with antipsychotic medication. Lost confidence, low mood and medication non‐adherence often follow. Yet, the dynamic interactions between the physical and psychological consequences of weight gain, and implications for intervention, are unknown. Objectives: We examined first‐person accounts of weight gain to identify preferences for weight change interventions. Design: A qualitative design was used to explore patients' experiences of weight change in the context of psychosis. Method: Semi‐structured interviews, analysed using grounded theory, were conducted with 10 patients with psychosis. Sample validation was conducted with peer researchers with lived experience of psychosis. Results: Patients described that initially the extent and speed of weight gain was overshadowed by psychotic experiences and their treatment. This led to a shocking realisation of weight gain. The psychological impact of weight gain, most strikingly on the self‐concept, was profound. Loss of self‐worth and changed appearance amplified a sense of vulnerability. There were further consequences on mood, activity and psychotic experiences, such as voices commenting on appearance, that were additional obstacles in the challenging process of weight loss. Sedative effects of medication also contributed. Unsuccessful weight loss left little hope and few preferences for interventions. Early information about common weight gain trajectories and working with experts‐by‐experience were valued. Rebuilding self‐confidence, efficacy and worth may be a necessary first step. Conclusions: The journey of weight gain in patients with psychosis is characterised by loss of self‐worth, agency and hope. There are multiple stages in the journey, each with different psychological reactions, that may need different treatment responses. [ABSTRACT FROM AUTHOR]

Background: Perioperative experience can be very distressing in adolescence if not managed properly by healthcare professionals. In the clinical context, the emotional expression of the adolescent is less spontaneous, which makes the assessment of anxiety, pain or even the desire to be involved in the perioperative process, difficult. Listening to their perioperative experiences will permit an understanding of their difficulties and expectations, regardless of the surgical intervention undergone. Aim: To explore the adolescents' perioperative experiences in relation to inpatient and outpatient elective surgery. Methods: Qualitative exploratory study, with thematic analysis approach. A purposive sample of 40 adolescents aged 14–18 years and in the perioperative period, from two paediatric surgery settings in a university hospital, was questioned from January to July 2020. Data were collected using a semi‐structured interview and analysed inductively with qualitative thematic analysis. Results: The data yielded one major theme, five themes, and 14 sub‐themes. The major theme, Adolescent in perioperative period, included the five themes: (1) emotional and psychological aspects; (2) physical aspects; (3) social aspects; (4) organizational aspects; (5) previous surgical experience. Adolescents expressed fear of the unknown, anxiety, difficulty in pain control, and feelings of autonomy loss. Issues related to withdrawal from school and friends is also a focus of adolescent concern during the perioperative period. Despite showing satisfaction with the way they were cared for, they complained about the lack of pre‐ and post‐operative preparation. Conclusion: There are aspects that should be considered when caring for adolescents in perioperative period. As far as possible, programmes to prevent adolescents' anxiety in perioperative period should be designed in a holistic perspective, with aim at the psychological, physical, sociocultural, and organisational aspects. [ABSTRACT FROM AUTHOR]

Background: As advancements in intensive care treatment have resulted in decreased mortality rates, more attention has been given to the experience of life after critical illness. Despite an increase in literature describing the physical, psychological, and cognitive health problems arising after critical illness, there is a shortage of research exploring the lifeworld of patients and relatives, including its internal and external interplay in everyday life. Addressing this is essential for gaining insights into the experience of everyday life and recovery after critical illness. Aims and objectives: To explore patients' and relatives' experiences of everyday life after critical illness. Design: Data were collected using semi‐structured interviews with 7 relatives and 12 patients. Interviews were audiotaped and transcribed verbatim. Methods: Drawing on the phenomenological‐hermeneutic tradition, data were analysed using Ricoeur's theory of interpretation, as described by Dreyer and Pedersen. Findings: The lifeworld of everyday life was disclosed in the theme "Finding oneself after critical illness," described as an overall comprehensive understanding. This theme was divided into the subthemes (a) redefining the self, (b) reintegrating with family, and (c) resuming everyday life, which followed the trajectory of the three phases: the known past, the uncertain present, and the unknown future. Conclusion: Critical illness and physical, psychological, and cognitive health problems create new and emerging difficulties in patients' and relatives' experiences of everyday life after intensive care. These experiences affect their understanding of themselves, their families, and their ability to resume pre‐intensive care unit everyday life. Implications for practice: The study underlines the need to supplement the affirmed domains in post‐intensive care syndrome with a social domain to enhance family‐centred care within the intensive care unit and across sectoral borders. Additionally, it highlights the need to develop rehabilitation strategies aimed at patients' and relatives' multifactorial health problems. [ABSTRACT FROM AUTHOR]

Background and Objectives: The COVID-19 crisis has caused a wave of stress, psychological disorders and physical problems in the world, but some people experience post-traumatic growth despite these problems. The aim of this study was to explain the religious coping strategies of growth based on the experiences of patients with COVID-19. Methods: A qualitative research design was conducted using content analysis method. Twenty-five participants were selected using purposive sampling and interviewed using semi-structured and in-depth interviews. Purposeful sampling was used to achieve data saturation. Data were analyzed according to the step-by-step process of Brown and Clark content analysis using MAXQDA software. Results: Data analysis resulted in 386 primary codes, 18 basic themes, 11 organizing themes. Religious coping strategies of post-traumatic growth in patients with COVID-19 were: "Spiritual reflection", "Positive religious framing", "Prayer", "Religious benevolence", "Invocation", "Trusting", "Religious hope", "Religious modeling", "Religious acceptance", "Preparation for Death", and "Seeking Religious support". Conclusion: Positive religious coping strategies significantly contribute to post-traumatic growth in patients with COVID-19. The findings of the present study can be used to design scales for measuring religious coping strategies, design and effectiveness of intervention programs to help COVID-19 patients to cope with disease stress and facilitate post-traumatic growth. [ABSTRACT FROM AUTHOR]

Objective: To improve patient experience of chemotherapy‐induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experience of the provision of care, information and support for CIPN. Methods: Data were collected between July and November 2019 using multiple qualitative methods. Non‐participant observations were undertaken in colorectal and breast cancer clinics and at clinician stations, including the observation of chemotherapy consultations between patients and clinicians. Semi‐structured interviews with people with cancer and clinicians were also conducted. Data were analysed using inductive reflexive thematic analysis. Results: Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. Conclusion: Findings show the need to address the lack of patients' overall familiarity with CIPN. Echoing earlier studies, our findings suggest that knowledge and understanding about CIPN among clinicians are limited or lacking. These insights from patient and clinicians' CIPN experiences can inform future interventions that may address the genuine needs of patients and enhance CIPN support. [ABSTRACT FROM AUTHOR]

Background: Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, ‘Momotamoy Korail’ run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. Methods: This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semistructured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Results: Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Conclusion: Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable. [ABSTRACT FROM AUTHOR]

Working in agriculture may cause serious health problems due to heavy working conditions and chemical exposure. This Husserlian phenomenological qualitative study was conducted with 22 women working in greenhouse agriculture to investigate the health and social problem(s). In the evaluation of the data, Colaizzi's seven‐step content analysis method and thematic analysis were used. The Kappa analysis was performed with two independent experts to measure the reliability of comparative fit, and the value obtained in the analysis was 1.00 (perfect fit). Based on the content analysis, six themes were defined. All participants indicated that they had different reproductive health‐related problems. Some participants stated that their children had respiratory system‐related problems and that they were subjected to physical, verbal/emotional and sexual violence by their husbands. It is important to provide health education, counselling services and screening programmes for women who work in greenhouse agriculture and thus are in the at‐risk group for poor health. [ABSTRACT FROM AUTHOR]

Background: Due to the rapid ageing of the population, there is increasing demand for long‐term care in the people's home environment. Such care aims to allow the people to stay at home and avoid hospitalisation or other institutional care. In home health care, care must be provided at the highest possible quality, with the focus on the people's needs and experiences. Objectives: This study explores the experiences and needs of frail older people receiving home health care. Design and methods: An exploratory descriptive qualitative approach was chosen. Audio‐taped semi‐structured interviews were conducted with fifteen older people receiving home health care. A content analysis was used to analyse the data collected. Results: The content analysis identified one main theme, three categories and seven subcategories related to frail older people's needs and experiences of home health care. The main theme was quality of care. The first category, Safe and Secure Care, consisted of three subcategories: Education and Experience of Nurses, Information, and Continuity of Care in terms of personnel continuity and regular care. The second category, Autonomy, contained two subcategories: Decision‐making and Self‐sufficiency. The last category, Relationship with Professionals, consisted of two subcategories: Personality of Nurse and Partnerships. Conclusion: Older people are able to express their satisfaction or dissatisfaction with home health care. The results of this study revealed that the quality of care is crucial for frail older people. Implication for practice: The provision of home health care is inherently highly specific; home care nurses should work to provide the highest possible quality of care. In particular, nurses should focus on ensuring that the care they provide is safe, effective, timely, efficient and person‐centred. [ABSTRACT FROM AUTHOR]

Aims: To explore adult experiences of fatigue after discharge from an intensive care unit and identify potential management strategies. Design: An exploratory qualitative study. Methods: One to one audio‐recorded semi‐structured interviews with 17 adult survivors of critical illness in the United Kingdom, lasting up to 1 h, between September 2019 and January 2020. Anonymised and verbatim‐transcribed interview data underwent a standard process of inductive thematic analysis as described by Braun and Clarke. Findings: Three themes were identified: fatigue is different for everyone; complex interrelating interactions; and personalised fatigue strategies. Fatigue was described as a distressing symptom, unique to the individual that causes an array of complex, often long‐term interrelating impacts on the survivor and their wider family, made worse by a lack of understanding, empathy and support resources. Support from others, alongside interventions such as exercise, good nutrition, information and alternative therapies are used by survivors with variable degrees of success. Conclusions: This qualitative study reports peoples' experiences of fatigue after critical illness. Findings highlight the significant impact it has on people's lives and those of their family and friends. [ABSTRACT FROM AUTHOR]

Bronchiectasis is a chronic respiratory disease that impacts significantly on quality of life for those who have it. There is a paucity of literature exploring the perspectives of children and young people. The aim of this study was to examine the day-to-day life experience of a group of young people with bronchiectasis. A qualitative study using semi-structured interviews explored fifteen young people's perspectives of life with bronchiectasis. Key themes were identified using an inductive iterative approach through constant comparative analysis guided by Thorne's interpretive description. Life with bronchiectasis was conceptualized by participants as "Pretty Normal". This consisted of two co-existing life views which represented how young people balanced the ups and downs of adolescence while learning to accommodate the demands of living with bronchiectasis. Three key thematic elements "sore and tired", 'life interrupted and "looking after self", influenced and challenged these two views of life. Young people with bronchiectasis portray life as being the same as their peers. Despite this, they recognized that the symptoms, interruptions, and self-management responsibilities led them to find ways of coping and integrating their experience into a new and modified view of normal. [ABSTRACT FROM AUTHOR]