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1.
Orphanet J Rare Dis ; 19(1): 172, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38641814

ABSTRACT

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.


Subject(s)
Delivery of Health Care , Rare Diseases , Humans , Child , Rare Diseases/diagnosis , Caregivers , Health Personnel
2.
BMC Med Educ ; 24(1): 338, 2024 Mar 26.
Article in English | MEDLINE | ID: mdl-38532384

ABSTRACT

BACKGROUND: The midwifery continuity of care model is one of the care models that have not been evaluated well in some countries including Iran. We aimed to assess the effect of a program based on this model on the clinical competence of midwifery students and delivery outcomes in Ahvaz, Iran. METHODS: This sequential embedded mixed-methods study will include a quantitative and a qualitative phase. In the first stage, based on the Iranian midwifery curriculum and review of seminal midwifery texts, a questionnaire will be developed to assess midwifery students' clinical competence. Then, in the second stage, the quantitative phase (randomized clinical trial) will be conducted to see the effect of continuity of care provided by students on maternal and neonatal outcomes. In the third stage, a qualitative study (conventional content analysis) will be carried out to investigate the students' and mothers' perception of continuity of care. Finally, the results of the quantitative and qualitative phases will be integrated. DISCUSSION: According to the nature of the study, the findings of this research can be effectively used in providing conventional midwifery services in public centers and in midwifery education. TRIAL REGISTRATION: This study was approved by the Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (IR.AJUMS.REC.1401.460). Also, the study protocol was registered in the Iranian Registry for Randomized Controlled Trials (IRCT20221227056938N1).


Subject(s)
Midwifery , Students, Nursing , Female , Humans , Infant, Newborn , Pregnancy , Clinical Competence , Continuity of Patient Care , Iran , Midwifery/education , Randomized Controlled Trials as Topic
3.
J Music Ther ; 61(2): 102-131, 2024 May 16.
Article in English | MEDLINE | ID: mdl-38484183

ABSTRACT

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p < .001), and the global QoL Indicator (p < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p < .001), and the Overall Quality of Life (p < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.


Subject(s)
Music Therapy , Quality of Life , Terminal Care , Humans , Music Therapy/methods , Female , Male , Terminal Care/psychology , Terminal Care/methods , Taiwan , Middle Aged , Aged , Adult , Family/psychology , Aged, 80 and over
4.
Front Psychol ; 15: 1334875, 2024.
Article in English | MEDLINE | ID: mdl-38510302

ABSTRACT

Introduction: Informal caregivers of elderly people with dependency (EPD) provide intensive care that can affect their quality of life (QoL). Psychosocial interventions such as music therapy are important to work on their self-care. The aim of this study is to analyze, with a mixed method approach, the experience of participating in a Songwriting Group Music Therapy (SGMT) intervention on informal caregivers of EPD. Methods: A total of 11 groups, with a convenience sample of 61 caregivers, received 10 SGMT sessions. Quantitative information related to QoL variables (anxiety, depression, spirituality, burden, and coping) was collected before and after the intervention and at 3 months of follow-up. Regarding qualitative data, an open-ended question about the experience of participating was asked. Results: Significant changes were shown, sustained over time, in trait anxiety and depression and subscales including inner peace, social functioning, and mental health. Three themes were generated from the thematic analysis, including that SGMT participation can enhance personal growth, bring out and enable work on emotions, and promote helpful interpersonal dynamics. Discussion: The findings indicate that SGMT is a useful intervention for informal caregivers of EPD, promoting psychological adjustment, enhanced coping, emotional regulation, and social support. This study reinforces the findings with caregivers of other populations, providing new results and highlighting the benefits of SGMT for caregivers of EPD.

5.
Cancer Causes Control ; 35(6): 963-971, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38402506

ABSTRACT

PURPOSE: Community engagement has benefits for cancer centers' work and for its researchers. This study examined the experiences and perceptions of community engagement by members of the Case Comprehensive Cancer Center (Case CCC) to create and implement a framework to meet the needs of the entire cancer center. METHODS: This study included three phases: 1) Semi-structured interviews with 12 researchers from a basic science program to identify needs and suggestions for the support of community engagement; 2) Preliminary interview results informed the development of a survey of 86 cancer center members' about their awareness of and readiness to integrate community outreach and engagement into their research; and 3) The Case CCC Office of Community Outreach and Engagement reviewed the results from phases 1 and 2 to develop and then utilize a framework of engagement opportunities. RESULTS: In the interviews and surveys, cancer center members recognized the importance of community engagement and expressed an interest in participating in COE-organized opportunities for bidirectional engagement. While participation barriers include communication issues, limited awareness of opportunities, and competing priorities, members were open to learning new skills, changing approaches, and utilizing services to facilitate engagement. The framework outlines engagement opportunities ranging from high touch, low reach to low touch, and high reach and was used to develop specific services. CONCLUSION: This study identified varying needs around community engagement using an approach aimed at understanding the perspectives of a community of scientists. Implementing the framework enables reaching scientists in different ways and facilitates scientists' recognition of and engagement with opportunities.


Subject(s)
Cancer Care Facilities , Humans , Cancer Care Facilities/organization & administration , Neoplasms/psychology , Neoplasms/therapy , Community Participation/methods , Surveys and Questionnaires , Capacity Building , Community-Institutional Relations
6.
Support Care Cancer ; 32(3): 169, 2024 Feb 20.
Article in English | MEDLINE | ID: mdl-38374447

ABSTRACT

PURPOSE: Foundational research demonstrates that spirituality may affect the way people with cancer experience pain. One potential route is through alterations in thoughts and beliefs, such as pain-related catastrophizing. The purpose of this study is to understand whether spirituality impacts pain experiences through pain-related catastrophizing. METHODS: This explanatory sequential mixed methods study was informed by an adapted Theory of Unpleasant Symptoms. Data were collected via online surveys (N = 79) and follow-up qualitative interviews (N = 25). Phase 1 employed Empirical Bayesian analysis. Phase 2 used deductive content analysis. Phase 3 involved creating a mixed methods joint display to integrate findings and draw meta inferences. RESULTS: Results indicate that total spiritual well-being was directly negatively associated with pain-related catastrophizing, and indirectly negatively associated with the outcomes of pain interference, pain severity, and pain-related distress. Qualitative categories highlight the supportive role of spirituality when facing pain, while also shedding light on the limitations of spirituality in the context of some pain (i.e., severe, neuropathic, and/or chronic). Mixed methods findings reveal the importance of spirituality for some people as they face cancer and cancer-related pain, as well as the need for integrating spirituality as part of a larger pain management plan. CONCLUSIONS: This research advances supportive cancer care by exploring the complex role of spirituality in pain experiences. Findings will inform further exploration into the role of spirituality in supporting holistic symptom management in the context of cancer, as well as developing and testing interventions to enhance spirituality and address symptom-related suffering.


Subject(s)
Cancer Pain , Neoplasms , Spiritual Therapies , Adult , Humans , Spirituality , Bayes Theorem , Pain/complications , Cancer Pain/therapy , Cancer Pain/complications , Neoplasms/complications
7.
HIV Res Clin Pract ; 25(1): 2312319, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38348872

ABSTRACT

Person-centered care (PCC) aims to improve client's experiences in HIV care while advancing outcomes. This study team developed the PCC assessment tool (PCC-AT) to assess PCC service performance in HIV treatment settings in Ghana. Study objectives aimed to describe the range of PCC-AT scores within and across study facilities and examine the feasibility of PCC-AT implementation in diverse HIV treatment settings. The PCC-AT was piloted at five health facilities providing HIV services among 37 staff. Immediately following each pilot, focus group discussions (FGDs) were conducted to gather feasibility data. Thematic qualitative analysis was conducted on translated FGD transcripts. Across facilities, providers scored highest in the staffing domain, followed by service provision, and direct client support. Time required to implement the PCC-AT averaged 62 minutes. Providers described the tool as well-structured, user-friendly, relevant, reflective of the core PCC delivery elements, and useful in elucidating actions to improve PCC service delivery across domains. The PCC-AT holds potential to strengthen activities that support clients' broader clinical, mental and psychosocial wellbeing by offering friendly services that attend to each client's holistic needs while contributing progress towards epidemic control.


Subject(s)
HIV Infections , Patient-Centered Care , Humans , Ghana , Feasibility Studies , Focus Groups , HIV Infections/drug therapy , HIV Infections/psychology
8.
Brain Inj ; 38(5): 355-360, 2024 Apr 15.
Article in English | MEDLINE | ID: mdl-38318793

ABSTRACT

OBJECTIVE: This pilot study tested the feasibility and stress reduction effectiveness of a one-time virtual reality mindfulness module (VRMM) in individuals with mild-to-moderate traumatic brain injury (TBI). METHODS: Thirty-eight participants participated in a pilot study utilizing a mixed methods convergent parallel design. Pretest and posttest stress levels were collected; participants engaged in a brief 4-question qualitative interview. Mann Whitney U and Wilcoxon Signed Rank Tests were used. Qualitative analysis utilized grounded theory. RESULTS: Post-VRMM, two-thirds (24) of participants had a statistically significant decrease in stress levels. A key qualitative finding indicated that participants found the immersiveness and realism of the VR environments helpful in compensating for cognitive deficits resulting from TBI. There were no adverse side effects reported, indicating that well-designed VRMMs that minimize motion-induced adverse effects are well tolerated in persons with TBI. CONCLUSION: A guided mindfulness activity in a VR environment was well tolerated, and participants overall found VRMM effective in reducing stress levels. VR-based environments have potential to harness guided mindfulness practice and may support persons with TBI to enhance concentration. Further application of this technology in TBI rehabilitation is promising and warrants future research to explore the benefit of VR in improving rehabilitation outcomes.


Subject(s)
Brain Injuries, Traumatic , Cognitive Dysfunction , Mindfulness , Virtual Reality , Humans , Mindfulness/methods , Pilot Projects , Brain Injuries, Traumatic/psychology
9.
J Appl Gerontol ; : 7334648241236236, 2024 Feb 29.
Article in English | MEDLINE | ID: mdl-38423075

ABSTRACT

Reminiscence therapy and music are often used to improve the wellbeing of older people; however, we do not know how these interventions are used in practice. This study explored how those working with older people view and use verbal Reminiscence Therapy (VRT) and Music-assisted Reminiscence Therapy (MRT). A total of 110 participants who worked or volunteered with older people in Australia were surveyed in this descriptive, mixed-method study. VRT and MRT were frequently and spontaneously used to respond to the varied needs of older adults. VRT and MRT lead to reported positive outcomes including better care practices, positive affect and mood, and improved social connections. MRT was used as a compensatory strategy when traditional VRT was not possible. This study describes the current practices of VRT and MRT, and an overview of how reminiscence-based approaches are used in Australia to address the health and wellbeing of older people.

10.
Fam Process ; 63(2): 749-767, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38258316

ABSTRACT

How Black Americans in the United States (U.S.) make sense of a sociopolitical climate marked by racist imagery, tensions, and police violence is important to understand given the numerously documented detrimental effects of racism-related stress on the well-being of Black parents and children. Informed by Racism-Related Stress Theory, the current study employed a convergent parallel mixed methods design to better understand the ways racism-related stressors in the sociopolitical climate impacted the daily lives and mental health of a sample of Black families with low income. Seventy-eight Black American preadolescents (Mage = 11.0; 43.6% girls) and their parents (79% mothers; 76% living below the U.S. federal poverty level [FPL]) from the southwestern U.S. reported their symptoms of depression and how they had been affected by racial stressors in the sociopolitical climate between Fall 2018 and Summer 2019. A nested sample of 10 parents (80% mothers; 80% living below the FPL) from the quantitative sample also participated in a semi-structured interview. Meta-inferences across methods were drawn pertaining to the influence of child gender on parents' interpretation of effects for children, the toll racism-related stress in the sociopolitical climate takes on Black families, and the transferal of effects on parents to children through parenting and parental depressive symptoms. Findings spotlight the need for policies and family-centered programming that address the racism-related stress faced by many Black youth and their families. Providing families with opportunities and tools that can potentially mitigate harmful effects and foster empowerment could promote positive and lasting change.


Subject(s)
Black or African American , Racism , Humans , Female , Male , Black or African American/psychology , Child , Racism/psychology , Adult , Stress, Psychological/psychology , Stress, Psychological/ethnology , Politics , Parents/psychology , Depression/ethnology , Depression/psychology , Poverty/psychology , United States , Southwestern United States
11.
JMIR Form Res ; 8: e46284, 2024 Jan 09.
Article in English | MEDLINE | ID: mdl-38194252

ABSTRACT

BACKGROUND: In Canada, 1 in 3 women and people of gestational age undergo an abortion in their lifetime. Despite the liberal legal context, barriers continue to exist for women and people who can become pregnant to access this service. OBJECTIVE: This study aims to (1) conduct a pilot study to demonstrate the feasibility and acceptability of myPostCare to support follow-up care after a procedural abortion; (2) use the findings to understand whether myPostCare has the potential to improve contraceptive behavior and knowledge, emotional well-being, and sexual health knowledge; and (3) develop a better understanding of how innovative mobile solutions can support integrative health programs in British Columbia with the goal of expanding to other sites across Canada. METHODS: People of gestational age (aged 14-45 y) who underwent a procedural abortion were recruited from 2 urban abortion facilities in British Columbia. The participants completed a baseline quantitative survey and were provided access to myPostCare for up to 30 days. A follow-up quantitative survey was sent via email on day 30. Qualitative interviews were conducted to explore user satisfaction and usability of myPostCare. Responses to the survey questions were summarized using descriptive statistics, and the system usability scale (SUS) was scored according to the instructions. A secure analytics platform was implemented to obtain data on the overall use of the website by users. Qualitative analysis was conducted with NVivo using a thematic analysis approach. This study was approved by the Women's and Children's Research Ethics Board. RESULTS: Overall, 62 participants were recruited (average age 30 y); 40% (25/62) of the participants completed the exit surveys, and 24% (6/25) consented to participate in the semistructured interviews; 40 participants had undergone an immediate postabortion intrauterine device (IUD) insertion, and 22 did not have an IUD inserted. Participants were satisfied with myPostCare. The SUS average score was 81.5 (SD 9.7; median 82.5, IQR 77.5-87.5), indicating high usability of the tool. Overall, 88% (22/25) of the participants changed their contraceptive method to an IUD. Web-based analytics demonstrated that there were 61 unique visitors to the site, and the top pages visited were Postprocedure Care, Emotional Well-Being, and Contraception Explorer. The longest time spent on the website was 56 minutes. The overall email open rate was 80%, with a click rate of 36%. CONCLUSIONS: This study demonstrates that communities and individuals are important collaborators in developing a mobile innovation that facilitates access to high-quality patient-centered abortion care. Through the cocreation process, a digital platform such as myPostCare highlighted a gap in abortion care in Canada, particularly around follow-up support after a procedural abortion.

12.
Can J Occup Ther ; 91(1): 65-77, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37654201

ABSTRACT

Background. There is a need for the occupational therapy profession to respond to the Truth and Reconciliation Commission of Canada Calls to Action and work towards supporting the health and well-being of Indigenous Peoples. Purpose. (1) To determine the knowledge gaps of occupational therapists about Indigenous health and (2) to create recommendations to address identified gaps and inform responses from the profession. Method. A national needs survey was created and distributed to occupational therapists across Canada to determine the knowledge of occupational therapists about Indigenous health. Survey results were analyzed using thematic analysis and descriptive statistics. Findings. Data collected from 364 survey responses informed six distinct themes representing knowledge gaps of occupational therapists related to Indigenous health as follows: lack of foundational knowledge, power relations, lifelong learner, need for appropriate tools/approaches, respectful collaboration, and environmental influences. Implications. The project offers insight into the role of the occupational therapy profession in the process of reconciliation. Insights are focused on decolonizing occupational therapy practice, building trusting relationships with Indigenous Peoples, and the provision of appropriate training for occupational therapists to engage in culturally safer practices.


Subject(s)
Occupational Therapy , Humans , Canada , Occupational Therapists , Surveys and Questionnaires , Indigenous Canadians
13.
J Integr Complement Med ; 30(2): 157-164, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37585621

ABSTRACT

Background: The COVID-19 pandemic was a time of rapid change and uncertainty, with individual jurisdictions within countries implementing a variety of preventative measures. At the onset of the pandemic, as little was known about how COVID-19 was transmitted, restrictions, such as lockdowns, were implemented to prevent further spread of this virus. In many jurisdictions, massage therapists were deemed as nonessential for a period. This disruption to their livelihood, as a professional group and without autonomy to decide, was unprecedented. This prompted the question as to whether this experience had impacted massage therapists' professional identity. Methods: A sequential explanatory mixed methods design was used and massage therapists in Australia and Canada were recruited to participate. Results from a quantitative questionnaire completed by 649 respondents and from 31 semistructured interviews from a subset of the questionnaire participants were used in the mixed analysis. Results: Massage therapists, impacted by the pandemic, experienced a discord between what it means to be a massage therapist, providing patient-centered care and the public health initiatives implemented during the pandemic. This discord occurred in multiple situations and the type of discord was influenced by a number of factors, including how therapists identified themselves within the workforce (i.e., as a health care provider or a service provider). Conclusion: This study sought to understand how the COVID-19 pandemic impacted massage therapists' professional identity. Massage therapists reported that the pandemic impacted their professional identity through a lack of congruence and discord between their identity-constituting beliefs and what it means to be a massage therapist. The sequela to this discord was therapists experiencing different types of moral distress and or moral injury. Future research is needed to determine the longer-term impacts of COVID-19 on massage therapists.


Subject(s)
COVID-19 , Pandemics , Humans , Massage , COVID-19/epidemiology , Communicable Disease Control , Canada/epidemiology , Australia/epidemiology
14.
J Eval Clin Pract ; 30(2): 268-280, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38037502

ABSTRACT

INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.


Subject(s)
Caregivers , Tissue and Organ Procurement , Adult , Humans , Female , Male , Caregivers/psychology , Canada , Living Donors/psychology , Focus Groups
15.
Health Soc Care Deliv Res ; 11(23): 1-164, 2023 Nov.
Article in English | MEDLINE | ID: mdl-38140881

ABSTRACT

Objectives: To understand the impact of multicomponent interventions to improve recovery of older adults following planned hospital treatment, we conducted two systematic reviews, one of quantitative and one of qualitative evidence, and an overarching synthesis. These aimed to: • understand the effect of multicomponent interventions which aim to enhance recovery and/or reduce length of stay on patient-reported outcomes and health and social care utilisation • understand the experiences of patients, carers and staff involved in the delivery of interventions • understand how different aspects of the content and delivery of interventions may influence patient outcomes. Review methods: We searched bibliographic databases including MEDLINE ALL, Embase and the Health Management Information Consortium, CENTRAL, and Cumulative Index to Nursing and Allied Health Literature and Allied and Complementary Medicine Database, conducted forward and backward citation searching and examined reference lists of topically similar qualitative reviews. Bibliographic database searches were completed in May/June 2021 and updated in April 2022. We sought primary research from high-income countries regarding hospital inpatients with a mean/median age of minimum 60 years, undergoing planned surgery. Patients experienced any multicomponent hospital-based intervention to reduce length of stay or improve recovery. Quantitative outcomes included length of stay and any patient-reported outcome or experience or service utilisation measure. Qualitative research focused on the experiences of patients, carers/family and staff of interventions received. Quality appraisal was undertaken using the Effective Public Health Practice Project Quality Assessment Tool or an adapted version of the Wallace checklist. We used random-effects meta-analysis to synthesise quantitative data where appropriate, meta-ethnography for qualitative studies and qualitative comparative analysis for the overarching synthesis. Results: Quantitative review: Included 125 papers. Forty-nine studies met criteria for further synthesis. Enhanced recovery protocols resulted in improvements to length of stay, without detriment to other outcomes, with minimal improvement in patient-reported outcome measures for patients admitted for lower-limb or colorectal surgery. Qualitative review: Included 43 papers, 35 of which were prioritised for synthesis. We identified six themes: 'Home as preferred environment for recovery', 'Feeling safe', 'Individualisation of structured programme', 'Taking responsibility', 'Essential care at home' and 'Outcomes'. Overarching synthesis: Intervention components which trigger successful interventions represent individualised approaches that allow patients to understand their treatment, ask questions and build supportive relationships and strategies to help patients monitor their progress and challenge themselves through early mobilisation. Discussion: Interventions to reduce hospital length of stay for older adults following planned surgery are effective, without detriment to other patient outcomes. Findings highlight the need to reconsider how to evaluate patient recovery from the perspective of the patient. Trials did not routinely evaluate patient mid- to long-term outcomes. Furthermore, when they did evaluate patient outcomes, reporting is often incomplete or conducted using a narrow range of patient-reported outcome measures or limited through asking the wrong people the wrong questions, with lack of longer-term evaluation. Findings from the qualitative and overarching synthesis will inform policy-making regarding commissioning and delivering services to support patients, carers and families before, during and after planned admission to hospital. Study registration: This trial is registered as PROSPERO registration number CRD42021230620. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 130576) and is published in full in Health and Social Care Delivery Research; Vol. 11, No. 23. See the NIHR Funding and Awards website for further award information.


More patients aged 60 or over need planned surgery. These patients are more likely to experience difficulties, such as urinary infections or falls, whilst in hospital, so should not spend more time in hospital than necessary. Hospitals use strategies that shorten hospital stay, but we do not know how older patients, or carers, feel about these, or whether they help patients recover in the long term. We wanted to know: how leaving hospital sooner affects how older patients feel and recover after planned surgery; how older patients, carers and staff feel about strategies designed to support older patients to go home earlier; which parts of these hospital care strategies work best? We brought together research about hospital care strategies that shorten the length of time older patients spend in hospital. We looked at patient questionnaires and interviews with patients, carers and hospital staff. Patients and carers helped us plan our research, understand our findings and consider who to share these with. hospital strategies to reduce hospital stay achieve this, without increasing risk of complications; information and follow-up care for patients and carers after discharge are essential; strategies which consider the individual needs of patients and help them understand their treatment, focus on their recovery goals and develop supportive relationships with staff were linked to better outcomes; lots of studies were excluded because they did not use patient questionnaires. Studies using questionnaires often focused on aspects of care delivered whilst patients were in hospital. Carers' voices were often overlooked. Research is needed to develop patient questionnaires to more fully capture the experiences of patients and carers and support hospitals to develop care strategies focused on the needs of individual patients and carers.


Subject(s)
Hospitalization , Patient Discharge , Humans , Aged , Middle Aged , Qualitative Research , Quality of Life , Hospitals
16.
Digit Health ; 9: 20552076231211552, 2023.
Article in English | MEDLINE | ID: mdl-37936956

ABSTRACT

Background: A major challenge in healthcare is the interpretation of the constantly increasing amount of clinical data of interest to inpatients for diagnosis and therapy. It is vital to accurately structure and represent data from different sources to help clinicians make informed decisions. Objective: We evaluated the usability of our tool 'Triptychon' - a three-part visualisation dashboard of essential patients' medical data provided by a direct overview of their hospitalisation information, laboratory, and vital parameters over time. Methods: The study followed a cohort of 20 participants using the mixed-methods approach, including interviews and the usability questionnaires, Health Information Technology Usability Evaluation Scale (Health-ITUES), and User Experience Questionnaire (UEQ). The participant's interactions with the dashboard were also observed. A thematic analysis approach was applied to analyse qualitative data and the quantitative data's task completion time and success rates. Results: The usability evaluation of the visualisation dashboard revealed issues relating to the terminology used in the user interface and colour coding in its left and middle panels. The Health-ITUES score was 3.72 (standard deviation (SD) = 1.0), and the UEQ score was 1.6 (SD = 0.74). The study demonstrated improvements in intuitive dashboard use and overall satisfaction with using the dashboard daily. Conclusion: The Triptychon dashboard is a promising new tool for medical data presentation. We identified design and layout issues of the dashboard for improving its usability in routine clinical practice. According to users' feedback, the three panels on the dashboard provided a holistic view of a patient's hospital stay.

17.
Front Psychol ; 14: 1258967, 2023.
Article in English | MEDLINE | ID: mdl-37915522

ABSTRACT

There is an increased interest in whether online arts interventions support mental health and social connections. This study explored eight weeks of online group dance as support for young people (aged 16-24) living with anxiety. The applicability of the 'social cure' theoretical framework to the novel context of an online dance class was sought. The study utilised an embedded QUAL+quan design, incorporating participatory focus group discussions (n = 3 groups; n = 11 participants) and one-on-one interviews (n = 2 participants), creative reflections (n = 16 participants) and ethnographic fieldnotes, and a repeated measures design with surveys at three timepoints (week 1, n = 27; week 4, n = 18; week 8, n = 14). Thematic analysis identified two overarching themes demonstrating how the dance classes (i) provided the opportunity to co-construct a meaningful shared identity and (ii) supported holistic wellbeing. The quantitative findings supported this, suggesting lower anxiety, depression, and loneliness and higher wellbeing, self-esteem, self-efficacy, and group closeness. This study expands the social cure to its application to an online dance context for the first time.

18.
Biomedicines ; 11(11)2023 Nov 01.
Article in English | MEDLINE | ID: mdl-38001951

ABSTRACT

Fibromyalgia syndrome (FMS) is a chronic condition characterized by chronic widespread pain, persistent fatigue, and disrupted sleep, significantly impacting well-being. Mild water-filtered infrared-A (wIRA) whole-body hyperthermia (WBH) is emerging as a promising pain management approach to FMS. Within the present randomized controlled trial (ClinicalTrials ID: NCT05135936), FMS patients underwent six sessions of mild wIRA-WBH over 3 weeks. Their pain levels were assessed at baseline and at week 12, while body core temperature and plateau phase duration were monitored during WBH. Qualitative interviews were conducted at week 12. Results from this mixed-methods study revealed that baseline pain intensity and plateau phase duration significantly predicted pain intensity at week 12. Thematic analysis of the interviews revealed diverse patient experiences with the treatment, with all patients reporting improvements in perceived pain and overall well-being. The onset and duration of pain relief varied among individuals. Overall, the findings suggest that the duration of the plateau phase may serve as an indicator for long-term pain reduction, although individual factors may influence treatment outcomes. Despite varying experiences, a prevailing trend of positive patient evaluations emerged. This study sheds light on the potential of wIRA-WBH as a therapeutic option for alleviating pain for and enhancing the well-being of FMS patients.

19.
J Evid Based Soc Work (2019) ; : 1-31, 2023 Nov 20.
Article in English | MEDLINE | ID: mdl-37982391

ABSTRACT

BACKGROUND: This study assessed the potential effectiveness, acceptability and feasibility of a tailored mindfulness-based intervention (MBI, REMIND 2.0) for personal recovery among people with mental illness during the COVID-19 pandemic. METHODS: In this pilot mixed methods randomized controlled trial, participants were assigned to either the MBI (n = 14) or the relaxation training (RT) (n = 14). Quantitative measures were used to assess primary outcomes, including personal recovery, mindfulness, self-compassion, resilience, and secondary outcomes, including depression, stress, anxiety, positive and negative moods, quality of life and general health at baseline (T0), post-intervention (T1) and one-month follow-up (T2). Quantitative interviews were conducted to explore the experiences and perceptions toward the MBI. RESULTS: Results indicated significant group and time interactions for all outcomes except anxiety and stress. MBI participants showed significant improvements in all outcomes at T1, which were maintained at T2, except for positive mood. RT participants showed a significant decline in resilience but significant improvements in all secondary outcomes at T1, but all outcomes significantly declined at T2, except for anxiety and stress. MBI participants were receptive toward the programme in all aspects of personal recovery. CONCLUSIONS: The tailored MBI is a potentially effective, feasible and acceptable approach to facilitate personal recovery among people with mental illness. Differences between MBI and RT are discussed.

20.
Trials ; 24(1): 689, 2023 Oct 24.
Article in English | MEDLINE | ID: mdl-37875962

ABSTRACT

BACKGROUND: A significant proportion of Canadian adults is impacted by chronic noncommunicable diseases. These conditions may be improved by peer-led health promotion interventions that target modifiable risk factors; however, to date, there is mixed evidence on the effectiveness of these interventions. Unlike other health promotion programs, Hans Kai is grounded in a holistic model of health that simultaneously addresses multiple determinants of health at different levels of human ecology. In Hans Kai, a set of informational sessions that are delivered in a group setting by healthcare professionals are followed by regular peer-led group meetings in a self-governed support group setting that is designed to promote implementation of newly learned health competences. The Hans Kai trial described here aims to evaluate the efficacy of the Hans Kai program in promoting the health and wellbeing of its participants and investigate the experiences of the Hans Kai participants and facilitators. METHODS: This research will involve a mixed methods trial combining an experimental component with a qualitative component. The experimental component will involve a 6-month 2-group parallel superiority randomized controlled trial (RCT) in which 105 participants will be randomly assigned to two conditions, an intervention group (n = 70) that will participate in the Hans Kai program and a control group (n = 35) that will have access to standard care using a computer-generated random sequence; blinding will not occur. The RCT will test the impact of the program on several health outcomes and will be followed by a 12-18-month observational follow-up study that will provide data on the long-term durability of the 6-month RCT health outcomes. The qualitative component will investigate the experiences of program participants (n = 30) and facilitators (n = 15) to identify the main strengths and limitations of Hans Kai, uncover potential implementation issues, and elucidate the mechanisms through which the program works. The population of interest will include adults aged 18 + with or without chronic health conditions who self-report an interest in taking control of their own health and improving their lifestyle. In the RCT, all outcomes of interest will be measured using a multi-method approach, involving self-report questionnaires and objective indicators, and within-subject mean changes in outcomes over time between the two groups will be compared to address the RCT aims. Similarly, in the qualitative component, a multi-method approach, involving in-depth individual interviews, photovoice, and online surveys, will be used to reach a deeper and more nuanced understanding of the program strengths, how the program works, and for which people it is more effective. Adaptable components of the program will also be investigated and modified according to the feedback provided by the RCT participants. In the mixed methods integration of evidence, the qualitative findings will be used to explain the quantitative RCT results. DISCUSSION: The RCT findings will help support the further development and use of Hans Kai as well as other peer-led health promotion interventions. TRIAL REGISTRATION: United Stated Clinical Trial Registry ClinicalTrials.gov (registration# NCT03949725; Protocol version 2, June 22nd, 2022).


Subject(s)
Noncommunicable Diseases , Humans , Adult , Noncommunicable Diseases/prevention & control , Canada , Health Promotion , Self-Help Groups , Chronic Disease , Randomized Controlled Trials as Topic
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