Promoting patient-centered care in CAR-T therapy for hematologic malignancy: a qualitative meta-synthesis.

BACKGROUND: CAR-T therapy has emerged as a potentially effective treatment for individuals diagnosed with hematologic malignancies. Understanding patients' unique experiences with this therapeutic approach is essential. This knowledge will enable the development of tailored nursing interventions that align with the increasing importance of patient-centered care. OBJECTIVE: To examine and synthesize qualitative data on patients and their family caregivers' experiences during the treatment journey. DESIGN: We conducted a systematic review and qualitative meta-synthesis. Eligible studies contained adult patient or family caregiver quotes about experiences of CAR-T therapy, published in English or Chinese in a peer-reviewed journal since 2015. Data sources included MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, Scopus, Cochrane Library, CNKI, and WanFang. METHODS: Systematic search yielded 6373 identified articles. Of these, 12 reports were included in the analysis, which covered 11 separate studies. Two reviewers independently extracted data into NVIVO 12.0. Qualitative meta-synthesis was performed through line-by-line coding of full text, organization of codes into descriptive themes, and development themes. RESULTS: The qualitative meta-synthesis yielded eight primary themes. Noteworthy revelations from patients and their family caregivers regarding the CAR-T therapy journey encompassed various aspects. Prior to CAR-T therapy, patients experienced a lack of actual choice, struggled with expectations for treatment outcomes, and encountered intricate emotional experiences. During or immediately after CAR-T therapy, patients reported both comfortable and uncomfortable experiences. Additionally, patients emphasized that concerns regarding treatment efficacy and adverse reactions intensified treatment-related distress. After CAR-T therapy, significant changes were observed, and the burden of home-based rehabilitation. Additionally, we found factors contributed to the high CAR-T therapy cost. CONCLUSIONS: To ensure the safety and sustainability of CAR-T therapy, it is crucial to address the physical and psychological aspects of the patient's experience. Effective communication and comprehensive management are highly valued by patients and their caregivers. Further research should investigate ways to reduce burdens and develop self-management education programs for patients and their families.

Exploring older people's experiences of the interpersonal care relationship between nurses and patients during hospitalization in the pandemic period: A qualitative study.

AIM: This article presents the findings of a qualitative study focusing on the experiences of people aged over 70 years in the interpersonal nurse-patient care relationship in hospital settings during and after the COVID-19 pandemic. The aim was to analyse different aspects of this relationship, including nurses' behaviour and caring attitudes, the person-centred model of care, patients' involvement in their own care and communication in the hospital context. DESIGN: An exploratory qualitative study was conducted on the basis of an interpretative framework. METHODS: Six focus groups were conducted. A total of 34 participants were purposively recruited from three nursing homes in Spain, Italy and Portugal. Specific inclusion criteria were used to select participants. RESULTS: Five main categories were identified. Analysis revealed the importance of empathy and sensitivity in caring relationships, as well as the need for personalized and patient-centred care. The importance of effective communication and recognition of ageist behaviour by professionals was highlighted. In addition, independent of the pandemic, situational factors in the hospital environment were identified that influence the interpersonal care relationship. CONCLUSIONS: The study highlights the need to promote a person-centred model of care that takes into account the specific preferences and needs of older people. This is achieved by identifying elements of the interpersonal nurse-patient relationship. In addition to highlighting the disparity of opinion regarding an active or passive role in self-care and decision making, the importance of addressing ageism and improving communication is emphasized. WHAT PROBLEM DID THE STUDY ADDRESS?: The importance of the patient-nurse relationship in hospital care has been highlighted in previous studies. Critical elements of the patient care experience have been identified as empathy and effective communication. Ageism in healthcare has been recognized as a potential barrier to patient-centred care. WHAT WERE THE KEY FINDINGS?: The main findings highlight the importance of empathy and personalized care, emphasize the importance of effective communication and address ageist behaviours in the nurse-patient relationship. WHERE AND WHO WILL THE RESEARCH IMPACT?: By highlighting the need for person-centred care and improved communication strategies, particularly in the context of caring for older patients during and after the COVID-19 pandemic, this research will have an impact on healthcare professionals, policy makers and carers. REPORTING METHOD: The COREQ guideline was used. PATIENT OR PUBLIC CONTRIBUTION: This study adopted a collaborative approach to ensure that patient perspectives were integrated into the research process. We organized regular focus groups. Patients were actively involved in shaping the research questions, refining the study design and interpreting the emerging findings. Their valuable input helped us to understand the nuances of their experience and to prioritize the aspects that were critical to their well-being. In addition, their insights guided the development of practical recommendations aimed at improving the interpersonal care relationship between nurses and patients in hospital settings, ensuring that their voices were heard and reflected in the proposed interventions. This patient-centred approach fostered a sense of empowerment among the participants. It reinforced the notion that their experiences and opinions are integral to shaping healthcare practice.

Healthcare providers' attitudes and associated factors on palliative care referral: A qualitative systematic review and meta-aggregation.

BACKGROUND: Early referral to palliative care has been viewed as providing opportunity for accomplishing end-of-life care goals of life closure, comfortable dying and effective grieving. However, previous studies have shown that palliative care referrals are being made too late. Healthcare providers play important role in helping terminally ill patients to early access and being referred to palliative care. It is necessary to understand healthcare providers' attitudes on palliative care referral and associated factors regarding referrals. OBJECTIVES: This review aimed to identify and synthesise healthcare providers' attitudes and associated factors on palliative care referrals systematically. DESIGN: A systematic review of qualitative evidence and meta-aggregation was conducted and guided according to PRISMA guideline. DATA SOURCES: PubMed, CINAHL, PsycINFO, EMBASE, Web of Science and Cochrane databases from inception to 24 October 2022. RESULTS: Database searches yielded 5856 references. Twenty-two studies met eligibility criteria and of moderate to high methodological quality were included. Studies occurred in USA, UK, Australia and France with 716 healthcare providers participants were included. A total of 378 codings were finally extracted and integrated into 41 categories, forming three synthesised findings: (1) Healthcare providers' attitudes towards palliative care referrals, (2) the influence of subjective norms on palliative care referral behaviour and (3) perceived behavioural control on palliative care referral behaviour. CONCLUSION: This review demonstrates a series of factors that affect the palliative care referrals, including the attitudes of healthcare providers, the participation of patients and families, the support of colleagues and supervisors, inter-professional collaboration, the availability of hospice resource, disease trajectory and socio-economic factors. Further research that addresses these factors and design relevant trainings on improving healthcare providers' attitudes, enhancing patient and family engagement, strengthening support networks and optimising resource allocation may aid to meet increasing demands of patients. RELEVANCE TO CLINICAL PRACTICE: This review not only guides healthcare providers in making better decisions about patient referrals by identifying and addressing barriers but also aids in the development of effective interventions that facilitate the early initiation of referrals. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The Experiences and Perceptions of Older Adults with Multimorbidity Toward E-Health Care: A Qualitative Evidence Synthesis.

Background: Given the growing population of older adults globally, e-Health plays an indispensable role in the chronic disease management of multimorbidity. However, qualitative evidence that synthesizes the experiences of older adults with multimorbidity using e-Health service is currently lacking. The objective was to explore the experiences and perceptions of e-Health care in community-based settings among the older adults with multimorbidity. Methods: Seven electronic databases including PubMed, The Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, Embase, Web of Science, China National Knowledge Infrastructure, and Chinese BioMedical Literature were searched, and the search was limited to studies from inception to September 1, 2023. Screening, data extraction, and quality appraisal were conducted independently by two reviewers. Thomas and Harden's thematic synthesis methodology was applied to synthesize the original themes. The methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research, and the confidence of synthesized themes was evaluated by the Confidence in the Evidence from Reviews of Qualitative Research approaches. Results: Ten studies with moderate methodological quality met eligibility criteria and were included finally. Studies were conducted in four countries with 235 participants who were living with multiple chronic conditions. Among the 10 included studies, 37 credible findings were extracted and interpreted into 3 synthesized themes and 12 subthemes: (1) advantages and benefits perceived during e-Health service, (2) multidimensional challenges and negative experience posed by e-Health service, and (3) preferences, suggestions, and expectations for future e-Health improvement. The confidence in the majority of the three final synthesized themes was rated between "low" and "moderate" scales. Conclusions: The findings of this study provide new insights into implementing tailored e-Health care for older adults with multimorbidity. Further research should emphasize on realizing the potential value of e-Health service based on users' needs and perspectives to promote age-friendliness in geriatric practice.

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

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

A Qualitative Systematic Review of Healthcare Practitioners' Experience of Workplace Violence.

Healthcare practitioners face significant risks of workplace violence due to various reasons such as hospital congestion, miscommunication, and aggressive behaviours of patients and relatives. Exposure to workplace violence may disrupt the workflow process and compromise patient care in healthcare facilities, ultimately affecting job performance, reducing job satisfaction, and negatively affecting the physical and mental health of healthcare practitioners. This study aimed to review all the published studies conducted on the experiences of workplace violence among healthcare practitioners. This study is a systematic review of qualitative studies. Data were collected through online databases including ScienceDirect, PubMed, MEDLINE and JSTOR were searched from the year 2015-2021. The inclusion criteria were: qualitative methods and mixed methods of data collection and analysis; studies that were carried out among healthcare practitioners who have been experience on workplace violence; scope of the primary studies included experience of workplace violence; and published in English/Malay in academic journal between 2015 and 2021. A total of 15 papers were included in the final analysis. The overall quality of the included papers was high. Of the 15 papers, 12 studies fully met the CASP criteria. The results of the 15 included studies were organised into the thematic groups of: i) verbal violence as the common workplace violence; ii) perceived causes of workplace violence and iii) seeking help. Across different countries, verbal violence was the most common type of workplace violence reported by healthcare practitioners. This review also identified that a lack of information, failure to meet patient expectations, and delayed treatment were the main contributing factors to workplace violence.

Twenty Years of Unspecified Kidney Donation: Unspecified Donors Looking Back on Their Donation Experiences.

The Netherlands was the first European country to implement unspecified kidney donation in 2000. This qualitative study aimed to evaluate the experiences of unspecified kidney donors (UKDs) in our transplant institute to improve the care for this valuable group of donors. We conducted semi-structured interviews with 106 UKDs who donated between 2000-2016 (response rate 84%). Interviews were audio-recorded, transcribed verbatim and independently coded by 2 researchers in NVivo using thematic analysis. The following 14 themes reflecting donor experiences were found: Satisfaction with donation; Support from social network; Interpersonal stress; Complaints about hospital care; Uncertainty about donor approval; Life on hold between approval and actual donation; Donation requires perseverance and commitment; Recovery took longer than expected; Normalization of the donation; Becoming an advocate for living kidney donation; Satisfaction with anonymity; Ongoing curiosity about outcome or recipient; Importance of anonymous communication; Anonymity is not watertight. The data reinforced that unspecified kidney donation is a positive experience for donors and that they were generally satisfied with the procedures. Most important complaints about the procedure concerned the length of the assessment procedure and the lack of acknowledgment for UKDs from both their recipients and health professionals. Suggestions are made to address the needs of UKDs.

The experiences of adolescents and young adults with epilepsy: A systematic review and meta-synthesis of qualitative studies.

BACKGROUND: Epilepsy is one of the most common and severe chronic neurological disorders and is associated with psychosocial problems. Several qualitative studies have investigated the experiences of adolescents and young adults with epilepsy. However, the findings were conflicting to some extent. This study examined and synthesized qualitative research data to understand the experiences of adolescents and young adults living with epilepsy, improving the development of targeted interventions and enhancing these experiences. OBJECTIVE: To synthesize qualitative evidence about the experiences of adolescents and young adults suffering from epilepsy. METHODS: This systematic review and qualitative evidence synthesis used the Joanna Briggs methodology for qualitative systematic reviews [1]. PubMed, PsychINFO, EMBASE, and Web of Science were searched for studies indexed until March 2022. Qualitative data were extracted, analyzed, and aggregated using meta-synthesis. RESULTS: Seventeen studies were included in the review. Three distinct themes were identified: "impact of epilepsy," "emotions associated with epilepsy," and "self-management of epilepsy." The results show that adolescents and young adults with epilepsy develop different strategies to manage epilepsy and associated problems. CONCLUSION: The results improved our understanding of the experiences of adolescents and young adults suffering from epilepsy. Several approaches are encouraged to improve these experiences and the quality of life, including granting more autonomy to affected children, providing individualized care and advice, improving public awareness of epilepsy to avoid stigma, and strengthening legal frameworks to safeguard the rights of affected people.

Experiences of breast cancer survivors with exercise rehabilitation: qualitative systematic review and meta-synthesis.

PURPOSE: This study aimed to synthesize and evaluate the available qualitative literature on posttreatment participation in exercise rehabilitation among breast cancer survivors. METHODS: This systematic review followed the Joanna Briggs Institute (JBI) meta-aggregation approach guided by ENTREQ, graded according to the ConQual approach, and evaluated using the JBI Qualitative Assessment and Review Instrument (JBI-QARI). We searched qualitative or mixed methods studies related to the experiences of exercise rehabilitation among breast cancer survivors conducted until April 13, 2023, in nine English and Chinese databases. The selected studies were reviewed independently, and the data were collaboratively synthesized into core themes. RESULTS: A total of 24 studies were included, and 88 findings resulted in five synthesis findings: (a) benefits of participating in exercise rehabilitation, (b) facilitators of participation in exercise rehabilitation, (c) obstacle factors for participating in exercise rehabilitation, (d) evaluation of the exercise program, and (e) recommendations. CONCLUSION: Breast cancer survivors need exercise to recover physically and mentally and to transition from cancer treatment to a normal life. The factors affecting exercise participation in breast cancer survivors are complex. Breast cancer survivors require timely and continuous effective exercise intervention forms, including online, offline, instrumental, and emotional support from others, especially healthcare providers and family members. Moreover, multidisciplinary collaboration is required to develop more effective and convenient exercise interventions.

"As If There Are Two of Us": The Battle of Borderline Personality Disorder Diagnosis in Lived Time.

BACKGROUND: Although the experience of reception of borderline personality disorder (BPD) diagnosis was previously researched, the process of mental adjustment to this diagnosis remains both empirically and theoretically unexplored. Theoretical concepts describing the structure of lived time in borderline patients, which underlies adjustment to diagnosis, living with the diagnosis, and recovery from the disorder, namely, immediacy and instantaneity are not empirically verified. AIM: This study aimed to phenomenologically describe the process of mental adjustment to the diagnosis of BPD and to uncover its underlying temporal structure. METHODS: Semi-structured phenomenological interviews based on Giorgi's descriptive phenomenological psychological method and Cottle's Circles Test. The participants were 10 white, adult women diagnosed with BPD aged 20-32 years. RESULTS: The process of adjustment to BPD diagnosis comprises three following stages: (1) a cumulative feeling of inadequacy preceding the diagnosis, (2) the outburst of diagnosis, (3) a battle of Self fragments while adjusting to the diagnosis. Simultaneously, the diagnosis modifies the relationship between the self and illness in a way that previously scattered problematic issues become inscribed into the self as symptoms. At the same time, these symptoms are relatively separated from its "healthy" part. The temporal structure underlying this process is discontinuous. Particular temporal dimensions are distanced from one another, and the inner images of the past and present consist of unconnected, emotional peaks. The present resembles waking up from the lethargy of the past, while the future consists of two colliding scenarios - either being free of or in control of symptoms. CONCLUSION: Clinicians should pay more attention to the pathway of identification with BPD diagnosis and its underlying temporality. This is crucial for recovery and may allow adjusting therapeutic interventions to the patients' needs. Treatment should aim to enhance the patients' abilities to reflect upon their temporal experience to merge their fragmented narrative identity and better situate them in the recovery process.

Breast Cancer Survivors' Experiences of Managers' Actions During the Return to Work Process: A Scoping Review of Qualitative Studies.

PURPOSE: Managers' actions can facilitate the return to work (RTW) process for breast cancer survivors (BCS). However, data on BCS' experiences of managers' actions regarding RTW are dispersed across multiple qualitative studies and do not offer useful insights for managers to support employees returning to work. This study aimed to summarize and map managers' actions experienced by BCS over three RTW phases (before, during, after) and categorize them as facilitating or hindering RTW. METHODS: A scoping review of qualitative studies was conducted. Four databases (MEDLINE, PsycINFO, Cochrane Library, EMBASE) were systematically searched for articles published between 2000 and 2022. Studies and participant characteristics were extracted using an excel spreadsheet. A thematic analysis with a predominantly deductive and semantic approach was conducted. RESULTS: Twenty-nine studies were included after screening 1042 records. Five themes were generated from the data. Two themes addressed the phase 'before RTW': 'managers' interpersonal skills' and 'preparing for RTW'; three in the 'during RTW' phase: 'managers' interpersonal skills', 'offering work flexibility', and 'offering work accommodations', and only one, 'paying attention to follow-up', was addressed in the 'after RTW' phase. CONCLUSION: This review mapped managers' actions experienced by BCS in three phases of the RTW process. Results suggested that, according to BCS, managers need to mobilize specific skills to provide appropriate support during the RTW process. Further research is needed to better understand the skills underlying managers' actions facilitating the RTW process.

Antenatal care experiences of uninfected pregnant women during the COVID-19 pandemic: A qualitative systematic review.

BACKGROUND: There is a limited understanding of pregnant women's antenatal care experiences during the COVID-19 pandemic. PURPOSE: To review and synthesize qualitative studies on uninfected pregnant women's antenatal care experiences during the COVID-19 pandemic. METHODS: Five databases were searched for qualitative studies published between January 2020 and January 2023. This study used a thematic synthesis of qualitative evidence and was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Furthermore, this review was registered with PROSPERO and a quality appraisal was assessed. RESULTS: Nine published qualitative studies were included in this review. The studies were conducted in eight countries and included 3,709 participants. Five themes were identified: (a) disruptions of normal antenatal care services, (b) feelings of uncertainty, (c) desire for sufficient spousal support, (d) coping strategies, and (e) trust in health care providers. DISCUSSION AND CONCLUSION: The themes can be utilized to reform current interventions for pregnant women by nurse-midwife managers and by health care policymakers to improve current practice and direct new research to prepare for future pandemics.

Barriers to nurses health advocacy role.

BACKGROUND: Speaking up to safeguard patients is a crucial ethical and moral obligation for nurses, but it is also a difficult and potentially dangerous component of nursing work. Health advocacy is gaining impetus in the medical literature, despite being hampered by barriers resulting in many nurses in Ghana remaining mute when faced with advocacy-required situations. We explored situations that thwart nurses from performing their health advocacy role. RESEARCH QUESTION: What would cause nurses to take no action when they witness situations that require them to act as health advocates for their clients or communities? RESEARCH DESIGN: An inductive, descriptive qualitative design was used to collect and analyse data on barriers that prevent nurses from practising their health advocacy role in Ghana. Individual one-on-one in-depth interviews were conducted using a semi-structured interview guide. The data were analysed using qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Twenty-four professional nurses and midwives registered with the Nursing and Midwifery Council were recruited from three regional hospitals in Ghana. These public hospitals were chosen from the upper, middle and coastal regions. ETHICAL CONSIDERATIONS: The UKZN Ethics Review Committee in South Africa and the GHS Ethics Review Committee in Ghana both gave their approval for this study. FINDINGS: Intrapersonal barriers, interpersonal barriers, and structural barriers emerged as major obstacles that nurses experience when performing their health advocacy role. CONCLUSIONS: Barriers to health advocacy have undermined nurses' ability to function as health advocates and are preventing them from utilising their health advocacy position in nursing practise. Giving nursing students positive role models in the classroom and in the clinic can help them become more effective health advocates.

Experiences of bowel symptoms in patients with rectal cancer after sphincter-preserving surgery: a qualitative meta-synthesis.

PURPOSE: This study is to identify and synthesize the available evidence of bowel symptom experiences of patients with rectal cancer after sphincter-preserving surgery (SPS). METHODS: This qualitative meta-synthesis was conducted following the Joanna Briggs Institute (JBI) qualitative systematic review methodology and reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Seven databases were searched on 22 December 2021. The selected studies were reviewed by two independent reviewers, and disagreements were resolved by discussion or with a third reviewer. RESULTS: Seven qualitative articles were included in the meta-synthesis with 192 total rectal cancer patients. The review summarized 53 qualitative findings into three synthesized findings: (a) Patients experienced bowel symptoms and triggered additional physiological problems, and they underestimated bowel symptoms; (b) patients had many negative emotions, and their daily life and social interaction were disturbed; and (c) patients adopted strategies to adapt or control their bowel symptoms. According to the ConQual evidence grading approach, the confidence of the synthesized findings was rated as moderate to low. CONCLUSIONS: The bowel symptoms of patients with rectal cancer after SPS have troubled their lives. Timely acquisition of symptom-related knowledge and enhancement of their coping abilities are important for the control and management of bowel symptoms. Healthcare professionals should clearly understand the bowel symptoms that patients may experience after SPS and provide supportive care for patients to improve patients' self-management abilities and quality of life. TRIAL REGISTRATION: PROSPERO: CRD42021242610.

"I Lost My Gift to Him": The Consequences of Female Sexual Dysfunction on Breast Cancer Survivors in Malaysia.

Sexuality is currently neglected in the medical care of cancer patients although female sexual dysfunction (FSD) and sexual problems are highly prevalent among breast cancer patients in Malaysia. This paper explores the consequences of breast cancer and its treatment on the sexuality and sexual health of women with breast cancer using a qualitative design and a phenomenological methodology. Fourteen married women with breast cancer who fulfill the criteria for FSD from Kelantan, Malaysia participated in two interviews: in-depth interview and followed by photo-elicitation interview after two weeks duration. The interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. We identified overlapping themes that can be explained by sexual script theory. Breast cancer treatments disturb the sex response cycle, leading to changes in sexuality, from intimacy in marriage to women preferring physical affection to intercourse. The women struggled with a perceived imperfection about symbol of femininity after noticing changes in their husbands' sexual performance and after experiencing their own sentiments of inadequacy as a wife. Fear and guilt surfaced as part of the journey, accompanied by frustration on the part of the spouse, or him becoming more attentive. This study highlights the problem of breast cancer and its treatment as regards the sexual well-being of patients and their spouses. Hence, recognizing and addressing sexual health will improve the overall experience for survivors.

Home-based training technology for persons with dementia: a qualitative study of barriers and facilitators for mobility-based training at home.

BACKGROUND: Physical training is increasingly used in rehabilitation for older people with dementia and several studies have documented positive results. Currently, welfare nations promote motion-based technology (MBT) at home to replace group training in various rehabilitation interventions. Research on the use of MBT by people with dementia is sparse. Therefore, this study explores how people with mild dementia and their relatives experience home-based MBT training in an intervention facilitated by a Danish municipality. METHODS: The study is part of a feasibility study and builds on participant observation and interviews with people with dementia (n = 4), their relatives (n = 4), and health care workers (n = 3) engaged in the project. RESULTS: Participants compared MBT training to group training and found that MBT was not a satisfactory replacement for group training. Some participants used and enjoyed MBT daily while others were challenged by the technology, the placement of the device, or motivation to independently complete the training program. CONCLUSION: MBT is possibly best considered as a supplement to group training, suitable for individuals able to use it in daily life.

Beyond the control of the care home: A meta-ethnography of qualitative studies of Infection Prevention and Control in residential and nursing homes for older people.

OBJECTIVE: This study aimed to develop interpretive insights concerning Infection Prevention and Control (IPC) in care homes for older people. DESIGN: This study had a meta-ethnography design. DATA SOURCES: Six bibliographic databases were searched from inception to May 2020 to identify the relevant literature. REVIEW METHODS: A meta-ethnography was performed. RESULTS: Searches yielded 652 records; 15 were included. Findings were categorized into groups: The difficulties of enacting IPC measures in the care home environment; workload as an impediment to IPC practice; the tension between IPC and quality of life for care home residents; and problems dealing with medical services located outside the facility including diagnostics, general practice and pharmacy. Infection was revealed as something seen to lie 'outside' the control of the care home, whether according to origins or control measures. This could help explain the reported variability in IPC practice. Facilitators to IPC uptake involved repetitive training and professional development, although such opportunities can be constrained by the ways in which services are organized and delivered. CONCLUSIONS: Significant challenges were revealed in implementing IPC in care homes including staffing skills, education, workloads and work routines. These challenges cannot be properly addressed without resolving the tension between the objectives of maintaining resident quality of life while enacting IPC practice. Repetitive staff training and professional development with parallel organisational improvements have prospects to enhance IPC uptake in residential and nursing homes. PATIENT OR PUBLIC CONTRIBUTION: A carer of an older person joined study team meetings and was involved in writing a lay summary of the study findings.

The lived experience of healthcare workers in quarantine: Findings of a systematic review, meta-synthesis and meta-summary.

AIMS: In pandemics, infection exposure and quarantine represent critical occupational risks for healthcare workers (HCWs). However, while the psychological consequences of HCWs' quarantine have been reviewed, other potential implications of quarantine on HCWs, such as those that are work-, professional-, social- and private-related, have not been summarised to date. Summarising quarantined HCWs' experiences in the current and past pandemics, as investigated with qualitative studies, might improve awareness of their needs, concerns, and the consequences of quarantine on their personal lives. Therefore, the lived experience of quarantined HCWs was reviewed and subjected to meta-synthesis and -summary. METHODS: A systematic review of qualitative studies followed by a meta-synthesis and -summary allowing an interpretative integration of the findings of qualitative studies, was performed. PubMed, CINHAL and Scopus databases were explored up to 31 January, 2021, without any limitation in time. The methodological quality of the studies was assessed using the Critical Appraisal Skills Programme. Methods and findings are reported according to the Enhancing transparency in reporting the synthesis of qualitative research statement. RESULTS: A total of 635 records were retrieved and five studies were included. Overall, five themes summarised the lived experience of quarantined HCWs: 1) Being emotionally challenged; 2) Living the quarantine limitations; 3) Losing freedom; 4) Accepting the quarantine; and 5) Staying away from me. The most frequent categories across studies were 'Feeling stressed' and 'Being constrained' (both 100%). The least frequent were 'Feeling sad' (20%), 'Enjoying my family' (20%) and 'Being refused as a family member' (20%). CONCLUSIONS: The lived experience of HCWs is multidimensional, the implications of which also affect private spheres of life: the immediate family and wider relatives. Understanding and learning from HCWs' lived experiences might support policymakers, public health authorities and managers with the goal of maintaining the highest physical and mental health of staff during outbreaks. Timely services supporting HCWs, both during and after episode(s) of quarantine, are suggested to prevent additional burdens on frontline professionals.

Interdisciplinary clinicians' attitudes, challenges, and success strategies in providing care to transgender people: a qualitative descriptive study.

BACKGROUND: Access to clinicians competent in transgender health remains a significant barrier and contributor toward health inequity for transgender people. Studies on access and barriers to care have predominantly evaluated transgender patients' perceptions, but scant research has included the perspectives of clinicians. AIMS: We conducted a qualitative study to explore how clinicians (meaning physicians and advanced practice providers, in this paper) in the United States: (1) attain and utilize information, (2) perceive barriers and facilitators, and (3) understood gaps in their professional training, in regard to practicing transgender health care. METHODS: A Qualitative Descriptive approach guided our conventional content analysis of field notes and interviews with clinicians within a parent study that explored health care access among transgender adults. Transcripts were coded into meaning units that were iteratively abstracted into themes. Standard measures were performed to promote the trustworthiness of the analysis and reduce bias. RESULTS: Participants (n = 13) consisted of physicians (n = 8), physician assistants (n = 3), and nurse practitioners (n = 2). The majority were women (n = 11), identified as White (n = 9), cisgender (n = 13), and ages ranged from 31 - 58 years. Five main themes were identified: (1) Knowledge Acquisition: Formal and Informal Pathways to Competency; (2) Perceived Challenges and Barriers: I didn't know what I was doing; (3) Power to Deny: Prescriptive Authority and Gatekeeping; (4) Stigma: This is really strange, and I can't really understand it; (5) Reflections: Strategies for Success, Rewards, and Personal Motivations. DISCUSSION: Clinicians gained a sense of comfort and competence with mentorship, self-directed learning, clinical experience, and person-centered, harm-reduction approaches. Stigma, bias, and structural-level factors were barriers to providing care. This study offers a unique perspective of clinicians' motivations and strategies for providing gender-affirming care and elucidates how stigma impacts the delivery of gender-affirming care.

Control in patients with advanced cancer: an interpretative phenomenological study.

BACKGROUND: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. METHODS: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent. RESULTS: We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients. CONCLUSIONS: The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.