Systematic Review of Telehealth Survey Instruments to Assess Patient and Family Caregiver Communication Experience

The COVID19 pandemic has resulted in rapid upsurge in telehealth use without clear knowledge of patient or family caregiver communication experiences using telehealth. This poster reports on a systematic review of quantitative and qualitative research inclusive of telehealth survey instruments following PRISMA guidelines using a PROSPERO registered protocol . 13 well-designed telehealth communication surveys were included in the final analysis. The findings from this systematic review reveal the need for development of survey instruments inclusive of communication experience in addition to current emphasis on technology interface and survey instruments relevant to pediatric family cohorts.https://digitalcommons.unmc.edu/surp2020/1018/thumbnail.jp

The Altered States Database: Psychometric data from a systematic literature review

In this paper, we present the development of the Altered States Database (ASDB), an open-science project based on a systematic literature review. The ASDB contains psychometric questionnaire data on subjective experiences of altered states of consciousness (ASC) induced by pharmacological and non-pharmacological methods. The systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Scientific journal articles were identified through PubMed and Web of Science. We included studies that examined ASC using the following validated questionnaires: Altered States of Consciousness Rating Scale (APZ, 5D-ASC, 11-ASC), Phenomenology of Consciousness Inventory (PCI), Hallucinogen Rating Scale (HRS), or Mystical Experience Questionnaire (MEQ30). The systematic review resulted in the inclusion of a total of 165 journal articles, whereof questionnaire data was extracted and is now available on the Open Science Framework (OSF) website (https://osf.io/8mbru) and on the ASDB website (http://alteredstatesdb.org), where questionnaire data can be easily retrieved and visualized. This data allows the calculation of comparable psychometric values of ASC experiences and of dose-response relationships of substances inducing ASC

Invisible Experts: A Systematic Review & Thematic Synthesis of Informal Carer Experiences of Inpatient Mental Health Care

Background: The negative impact of caregiving on carers’ physical and psychological wellbeing is well documented. Carers of mental health inpatients face additional burden, and report predominantly negative experiences of inpatient services. It remains unclear why, despite policies intended to improve inpatient experiences. A comprehensive review of carers’ inpatient experiences is needed to understand carer needs. As such, we aimed to conduct a systematic review and thematic synthesis of carer experiences of inpatient mental health care. Methods: We searched MEDLINE, PsycINFO, Embase and CINAHL for qualitative studies examining carer experiences of mental health inpatient care. Searches were supplemented by reference list screening and forward citation tracking of included studies. Results were synthesised using thematic synthesis. Our protocol was registered on PROSPERO (CRD42020197904) and our review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Findings: 12 studies were included from 6 countries. Four themes were identified: the emotional journey of inpatient care, invisible experts, carer concerns about quality of care for their loved one and relationships and partnership Interpretation: Greater attention must be paid to ensure carers are well-supported, well-informed, and included in care. More emphasis must be placed on fostering positive relationships between carers, service users and staff and in facilitating continuity of care across inpatient and community services to provide carers with a sense of security and predictability. Further research is needed to explore differences in experiences based on carer and service user characteristics and global context, alongside co-production with carers to develop and evaluate future guidelines and policies

Attitudes toward and experiences of clinical and non-clinical services among individuals who self-harm or attempt suicide: a systematic review

The prevalence of self-harm has increased substantially in recent decades. Despite the development of guidelines for better management and prevention of self-harm, service users report that quality of care remains variable. A previous systematic review of research published to June 2006 documented largely negative experiences of clinical services among patients who self-harm. This systematic review summarized the literature published since then to July 2022 to examine contemporary attitudes toward and experience of clinical and non-clinical services among individuals who self-harm and their relatives. We systematically searched for literature using seven databases. Quality of studies was assessed using the Mixed-Methods Appraisal Tool and findings were summarized using a narrative synthesis. We identified 29 studies that met our inclusion criteria, all of which were from high- or middle-income countries and were generally of high methodological quality. Our narrative synthesis identified negative attitudes toward clinical management and organizational barriers across services. Generally, more positive attitudes were found toward non-clinical services providing therapeutic contact, such as voluntary sector organizations and social services, than clinical services, such as emergency departments and inpatient units. Views suggested that negative experiences of service provision may perpetuate a cycle of self-harm. Our review suggests that in recent years there has been little improvement in attitudes toward and experiences of services for patients who self-harm. These findings should be used to reform clinical guidelines and staff training across clinical services to promote patient-centered and compassionate care and deliver more effective, acceptable and accessible services

Exercise adherence in men with prostate cancer undergoing androgen deprivation therapy: a systematic review and meta-analysis.

Androgen deprivation therapy (ADT) for prostate cancer treatment is associated with adverse physiological changes; however, exercise can improve outcomes. This systematic review and meta-analysis aimed to determine exercise intervention adherence and its effects on physiological outcomes in men diagnosed with prostate cancer undergoing ADT. Uniquely, this review incorporated a meta-aggregation of qualitative data, providing perspectives from the men’s experiences. A systematic review and meta-analysis were completed following PRISMA guidelines. Databases (CINAHL, Cochrane, PubMed) were searched for studies using "prostate cancer", "exercise intervention", and "androgen deprivation therapy". Quantitative randomised controlled trials describing adherence to exercise interventions were selected, with qualitative articles selected based on descriptions of experiences around participation. Subgroup meta-analyses of adherence, exercise mode, and intervention duration were completed for quality of life, aerobic fitness, fatigue, and strength. In total, 644 articles were identified, with 29 (n = 23 quantitative; n = 6 qualitative) articles from 25 studies included. Exercise had no effects (p 12-weeks

Invisible experts: a systematic review & thematic synthesis of informal carer experiences of inpatient mental health care

Background: The negative impact of caregiving on carers’ physical and psychological wellbeing is well documented. Carers of mental health inpatients have particularly negative experiences and largely report being dissatisfied with how they and their loved one are treated during inpatient care. It remains unclear why, despite policies intended to improve inpatient experiences. A comprehensive review of carers’ inpatient experiences is needed to understand carer needs. As such, we aimed to conduct a systematic review and thematic synthesis of carer experiences of inpatient mental health care. Methods: We searched MEDLINE, PsycINFO, Embase and CINAHL for qualitative studies examining carer experiences of mental health inpatient care. Searches were supplemented by reference list screening and forward citation tracking of included studies. Results were synthesised using thematic synthesis. Our protocol was registered on PROSPERO (CRD42020197904) and our review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Findings: Twelve studies were included from 6 countries. Four themes were identified: the emotional journey of inpatient care; invisible experts; carer concerns about quality of care for their loved one; and relationships and partnership between carers, service users and staff. Interpretation: Greater attention should be paid to ensure carers are well-supported, well-informed, and included in care. More emphasis must be placed on fostering positive relationships between carers, service users and staff and in facilitating continuity of care across inpatient and community services to provide carers with a sense of security and predictability. Further research is needed to explore differences in experiences based on carer and service user characteristics and global context, alongside co-production with carers to develop and evaluate future guidelines and policies

What are the unmet supportive care needs of men and their partner/caregivers living with and beyond penile cancer?

Globally, cancer of the penis is an uncommon malignancy with reported incidence in Western countries of 1 per 100,000 in Europe. More recently, epidemiological data in United Kingdom (UK) has identified a 21% increase in cases of penile cancer incidence over recent years. An existing systematic review, identified that 50% of men affected by penile cancer experienced psychological problems, 40% reported a negative impact on quality of life, and 70% of patients experienced difficulties with sexual function. This review does not identify the lived experienced of penile cancer, the impact that penile cancer can have on partner/caregivers, or importantly, the areas of unmet supportive care needs in care delivery. Gaining more knowledge of the experiences of men and their loved ones affected by penile cancer will provide additional insights for healthcare providers to create a holistic model of care and clinical practice guidelines. Therefore, this systematic review will address the following research questions: 1. What are the different domains of unmet supportive care needs of men and their partner/caregivers affected by penile cancer? 2. What are the most frequently reported individual domains of unmet need in the current available literature? This review will be conducted using the systematic review methodology provided by the European Association of Urology for clinical guidelines practice

Delivering unexpected news via obstetric ultrasound: A systematic review and meta‐ethnographic synthesis of expectant parent and staff experiences

Expectant parents report negative experiences of receiving unexpected news via ultrasound. There is a need to improve communication in this setting, but a lack of understanding on how to achieve this. This systematic review aimed to synthesise findings from qualitative studies exploring experiences of expectant parents or healthcare professionals when a fetal abnormality or unexpected finding was identified via ultrasound. MEDLINE, EMBASE, CINAHL and PsycINFO were searched using three blocks of terms (fetal abnormalities; ultrasound; experiences). Qualitative studies exploring the disclosure of pregnancy complications during ultrasound examinations were included and analysed using meta‐ethnographic synthesis. The review was conducted according to PRISMA and eMERGe guidelines. The review identified 28 studies. News delivered via ultrasound can be viewed as a journey involving five phases (expectations of ultrasound scans; discovery; shock; decisions and planning; adaptation). How well this is navigated depends upon the extent to which information needs and support needs are met. Ultrasound is a uniquely challenging situation to communicate difficult news as there is the potential for news to be communicated immediately. Care quality could be improved by the provision of written information and the use of correct terminology to describe abnormalities

Online Learning for Vocational Education: Uncovering Emerging Themes on Perceptions and Experiences

The worldwide spread of the COVID19 pandemic has shifted the teaching of theory and practical sessions in all schools, including in the field of vocational education, to online learning. Theoretical and practical learning in vocational education become more flexible and is not confined to physical space.  A systematic literature review of selected research articles was conducted using Systematic Reviews and Meta-Analyses (PRISMA) guidelines based on important keywords of online learning in vocational education. Initially, the research identified 89 articles from Scopus databases by using a specific keywords search. After the screening phase, ten articles were finalized to meet the criteria for review and discussion in this paper. The thematic analysis conducted reveals several exciting topics discussed in this paper; students' experiences, teaching and learning performances, and the teacher and students' perception of online learning for vocational education. The study implies the cruciality of understanding the role of teachers and students in vocational education so online learning can be optimized and conducted efficiently

Identifying experiences of supportive care of children and young people affected by kidney failure: a qualitative systematic review.

Children and young people affected by kidney failure experience complexities in their care. Little is known about the unique needs of this young patient population group living with a long-term condition. A meta-aggregation of all qualitative studies was conducted to identify experiences of supportive care among children and young people living with kidney failure. A systematic review of qualitative studies was conducted following the Joanna Briggs Institute meta-aggregation method. This review has been reported according to the PRISMA statement guidelines. Six electronic databases (CINAHL, Cochrane Library, MEDLINE, Proquest, PsycINFO, and Scopus) were comprehensively searched by an expert systematic review librarian using keywords and subject headings, from inception to September 2022. All studies were accessed using a predetermined inclusion and exclusion criteria. Methodological quality assessment and data extraction performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories which created the overall synthesised findings. A total of 34 studies were included in this review representing a total of 613 children and young people affected by kidney failure. There was a total of 190 findings which created 13 categories representing experiences of supportive care. The meta-aggregation developed five synthesised findings namely: 'physical needs', 'information and technology', 'treatment and healthcare', 'social needs' and 'psychological impacts'. This systematic review identified that children and young people affected by kidney failure can experience a range of unmet supportive care needs in routine clinical services. Kidney failure impacted children and young people's self-identify, social and peer networks, introduced daily practical needs because of inherent physical and psychological burden due to the failure and associated treatments. Despite improvements in the medical management of kidney failure in children and young people, further attention is needed to optimise supported self-management in this young patient group