1,910 results
Search Results
2. Protocol paper: Multi-site, cluster-randomized clinical trial for optimizing functional outcomes of older cancer survivors after chemotherapy.
- Author
-
Yilmaz, S., Janelsins, M.C., Flannery, M., Culakova, E., Wells, M., Lin, P.-J., Loh, K.P., Epstein, R., Kamen, C., Kleckner, A.S., Norton, S.A., Plumb, S., Alberti, S., Doyle, K., Porto, M., Weber, M., Dukelow, N., Magnuson, A., Kehoe, L.A., and Nightingale, G.
- Abstract
Cancer survivors over the age of 65 have unique needs due to the higher prevalence of functional and cognitive impairment, comorbidities, geriatric syndromes, and greater need for social support after chemotherapy. In this study, we will evaluate whether a Geriatric Evaluation and Management-Survivorship (GEMS) intervention improves functional outcomes important to older cancer survivors following chemotherapy. A cluster-randomized trial will be conducted in approximately 30 community oncology practices affiliated with the University of Rochester Cancer Center (URCC) National Cancer Institute Community Oncology Research Program (NCORP) Research Base. Participating sites will be randomized to the GEMS intervention, which includes Advanced Practice Practitioner (APP)-directed geriatric evaluation and management (GEM), and Survivorship Health Education (SHE) that is combined with Exercise for Cancer Patients (EXCAP©®), or usual care. Cancer survivors will be recruited from community oncology practices (of participating oncology physicians and APPs) after the enrolled clinicians have consented and completed a baseline survey. We will enroll 780 cancer survivors aged 65 years and older who have completed curative-intent chemotherapy for a solid tumor malignancy within four weeks of study enrollment. Cancer survivors will be asked to choose one caregiver to also participate for a total up to 780 caregivers. The primary aim is to compare the effectiveness of GEMS for improving patient-reported physical function at six months. The secondary aim is to compare effectiveness of GEMS for improving patient-reported cognitive function at six months. Tertiary aims include comparing the effectiveness of GEMS for improving: 1) Patient-reported physical function at twelve months; 2) objectively assessed physical function at six and twelve months; and 3) patient-reported cognitive function at twelve months and objectively assessed cognitive function at six and twelve months. Exploratory health care aims include: 1) Survivor satisfaction with care, 2) APP communication with primary care physicians (PCPs), 3) completion of referral appointments, and 4) hospitalizations at six and twelve months. Exploratory caregiver aims include: 1) Caregiver distress; 2) caregiver quality of life; 3) caregiver burden; and 4) satisfaction with patient care at six and twelve months. If successful, GEMS would be an option for a standardized APP-led survivorship care intervention. ClinicalTrials.gov NCT05006482 , registered on August 9, 2021. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
3. Feasibility and acceptability of an acceptance and commitment therapy for caregivers of dementia: a single arm trial emphasizing adult protection
- Author
-
Gul, Mahvia, Kanwal, Aniqa, and Chaudhry, Husnain Ali
- Published
- 2024
- Full Text
- View/download PDF
4. Understanding communicative relationships between caregivers and foreign retirees: a diffractive vignettes approach
- Author
-
Phanthaphoommee, Narongdej and Siwapathomchai, Sunida
- Published
- 2024
- Full Text
- View/download PDF
5. Follow-up for Alzheimer patients: European Alzheimer disease consortium position paper
- Author
-
Nourhashémi, F., Olde Rikkert, M. G., Burns, A., Winblad, B., Frisoni, G. B., Fitten, J., and Vellas, B.
- Published
- 2010
- Full Text
- View/download PDF
6. Spousal support and working woman’s career progression: a qualitative study of woman academicians in the University of Kashmir
- Author
-
Wani, Ambreen Khursheed
- Published
- 2023
- Full Text
- View/download PDF
7. Exploration of caregiver experience for children with ASD: an in-depth perspective
- Author
-
Gupta, Neha, Khanna, Manya, Garg, Rashi, Sethi, Vedantika, Khattar, Shivangi, Tekkar, Purva, Maria, Shwetha, Gupta, Muskan, Saxena, Akash, Gupta, Parul, and Ann Schuchert, Sara
- Published
- 2023
- Full Text
- View/download PDF
8. Caregivers’ perspectives on preparing girls to leave care in Ethiopia
- Author
-
Van Breda, Adrian D., Takele, Anduamlak Molla, and Kotecho, Messay Gebremariam
- Published
- 2022
- Full Text
- View/download PDF
9. Hosting persons with mental illness: narrative study on the experiences of a female caregiver managing a mental home in Ghana
- Author
-
Amissah-Essel, Salome, Ebu Enyan, Nancy Innocentia, and Asiedu, Christiana
- Published
- 2022
- Full Text
- View/download PDF
10. A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice.
- Author
-
Ugalde, Anna, Gaskin, Cadeyrn J., Rankin, Nicole M., Schofield, Penelope, Boltong, Anna, Aranda, Sanchia, Chambers, Suzanne, Krishnasamy, Meinir, and Livingston, Patricia M.
- Subjects
- *
META-analysis , *ELECTRONIC paper , *DATA extraction , *CANCER , *CAREGIVERS - Abstract
Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation. [ABSTRACT FROM AUTHOR]- Published
- 2019
- Full Text
- View/download PDF
11. The elderly caregiver questionnaire for COVID-19 (ECQC-24)
- Author
-
Abdul Rahman, Hanif, Bani Issa, Wegdan, Rababa, Mohammad, Idris, Deeni Rudita, Abdul-Mumin, Khadizah H., and Naing, Lin
- Published
- 2022
- Full Text
- View/download PDF
12. Dementia care partners’ reported outcomes after adaptive riding: a theoretical thematic analysis
- Author
-
Lassell, Rebecca, Fields, Beth, Cross, Jennifer E., and Wood, Wendy
- Published
- 2022
- Full Text
- View/download PDF
13. Getting the cues of elder abuse: an identification through dependency and modernization
- Author
-
Bajpai, Naval, Kulshreshtha, Kushagra, Dubey, Prince, and Sharma, Gunjan
- Published
- 2020
- Full Text
- View/download PDF
14. Health of caregiver-employees in Canada : Determining the value of caregiver-friendly workplace policies and social support
- Author
-
Wang, Li, Williams, Allison, and Kitchen, Peter
- Published
- 2018
- Full Text
- View/download PDF
15. Occupational therapy interventions for adult informal carers and implications for intervention design, delivery and evaluation: A systematic review.
- Author
-
Micklewright, Kerry and Farquhar, Morag
- Subjects
SERVICES for caregivers ,CINAHL database ,PSYCHOLOGY information storage & retrieval systems ,MEDICAL databases ,MEDICAL information storage & retrieval systems ,SYSTEMATIC reviews ,OCCUPATIONAL therapy ,HUMAN services programs ,PSYCHOLOGY of caregivers ,MEDLINE - Abstract
Introduction: Informal carers provide vital support for patients, reducing strain on health and social care services. However, caring can detrimentally affect carers' health and wellbeing, thus policy advocates for improved carer support. Objective: to establish the published international evidence base regarding interventions for carers delivered by occupational therapists. Method: English language studies published January 2010–January 2021 were identified against predetermined inclusion/exclusion criteria via searches of MEDLINE, EMBASE, CINAHL, PsychINFO, OTSeeker, Scopus, Web of Science and the Cochrane Library. Supplemental strategies: database alerts, hand-searching, searching of included papers' reference lists and citations, and contacting key authors. Two reviewers completed critical appraisal and produced a textual narrative synthesis of data using a convergent integrated method. Results: 38 papers were included, reporting 21 interventions. Most were dyadic, home-based interventions for carers of people living with dementia. Common intervention components included: assessment and goal-setting, skill training, education, coping strategies, equipment provision, environmental adaptation and signposting. Interventions improved outcomes for carers, however, intervention design and evaluation require careful consideration to maximise carer benefits and capture intervention effects. Conclusion: Occupational therapist delivered carer interventions enhance support and improve carer outcomes. Intervention and evaluation designs should include careful selection of outcome measures, avoidance of increased carer burden in dyadic interventions and acknowledgement of known barriers and facilitators to both carer and therapist intervention engagement. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
16. What makes a nursing home a home? Insights from family members and friends
- Author
-
Weeks, Lori, Chamberlain, Stephanie, and Keefe, Janice
- Published
- 2017
- Full Text
- View/download PDF
17. CAREERS Conference Paper Abstracts.
- Subjects
OCCUPATIONS ,CAREER development ,EXECUTIVES ,ORGANIZATIONAL structure - Abstract
This section presents several conference paper abstracts on careers. The research entitled 'Using Intelligent Networks to Advance Careers in a Knowledge Economy,' by Suzanne C. de Janasz, Sherry E. Sullivan and Vicki Whiting, argues that because organizational structures have changed and careers have become boundaryless, individuals must make use of an intelligent network of multiple and diverse mentors in order to succeed in the knowledge economy. 'Structuration Theory in Careers Research,' by Mary Mallon, Joanne Duberley and Laurie Cohen focuses on how Barley's (1989) model of the structuring process in careers was used as a sensitizing device to analyze individuals' sense-making of the transition from managerial work to independent work arrangements. The model is based heavily on Giddens' Structuration theory and, to a lesser extent, on Symbolic Interactionism. 'Corporate Restructuring and Career Advancement: Learning From Job Experiences in Hong Kong,' by Alicia S. M. Leung, examines the factors that contribute to career advancement in a sample of 44 Hong Kong managers working in three local companies that had undergone restructuring. The findings indicate that they were acutely aware of shifts in the nature of their career paths but generally were reactive to changes rather than proactive.
- Published
- 2003
- Full Text
- View/download PDF
18. Assessing the burden of childhood asthma: validation of electronic versions of the Mini Pediatric and Pediatric Asthma Caregiver's Quality of Life Questionnaires.
- Author
-
Minard, Janice, Thomas, Nicola, Olajos-Clow, Jennifer, Wasilewski, Nastasia, Jenkins, Blaine, Taite, Ann, Day, Andrew, Lougheed, M., Minard, Janice P, Thomas, Nicola J, Olajos-Clow, Jennifer G, Wasilewski, Nastasia V, Taite, Ann K, Day, Andrew G, and Lougheed, M Diane
- Subjects
ASTHMA in children ,CAREGIVERS ,QUALITY of life ,COEFFICIENTS (Statistics) ,ASTHMA treatment ,PSYCHOLOGY of asthma ,MENTAL health ,PSYCHOLOGY of caregivers ,COMPARATIVE studies ,COMPUTERS ,EMOTIONS ,RESEARCH methodology ,MEDICAL cooperation ,PEDIATRICS ,QUESTIONNAIRES ,RESEARCH ,EVALUATION research - Abstract
Purpose: To validate electronic versions of the Mini Pediatric and Pediatric Asthma Caregiver's Quality of Life Questionnaires (MiniPAQLQ and PACQLQ, respectively), determine completion times and correlate QOL of children and caregivers.Methods: A total of 63 children and 64 caregivers completed the paper and electronic MiniPAQLQ or PACQLQ. Agreement between versions of each questionnaire was summarized by intraclass correlation coefficients (ICC). The correlation between MiniPAQLQ and PACQLQ scores from child-caregiver pairs was assessed using Pearson's correlation coefficient.Results: There was no significant difference (mean difference = 0.1, 95% CI -0.1, 0.2) in MiniPAQLQ Overall Scores between paper (5.9 ± 1.0, mean ± SD) and electronic (5.8 ± 1.0) versions, or any of the domains. ICCs ranged from 0.89 (Overall) to 0.86 (Emotional Function). Overall PACQLQ scores for both versions were comparable (5.9 ± 0.9 and 5.8 ± 1.0; mean difference = 0.0; 95% CI -0.1, 0.2). ICCs ranged from 0.81 (Activity Limitation) to 0.88 (Emotional Function). The electronic PACQLQ took 26 s longer (95% CI 11, 41; p < 0.001). Few participants (3-11%) preferred the paper format. MiniPAQLQ and PACQLQ scores were significantly correlated (all p < 0.05) for Overall (r paper = 0.33, r electronic = 0.27) and Emotional Function domains (r paper = 0.34, r electronic = 0.29).Conclusions: These electronic QOL questionnaires are valid, and asthma-related QOL of children and caregivers is related. [ABSTRACT FROM AUTHOR]- Published
- 2016
- Full Text
- View/download PDF
19. Unequal care provision: Evidence from the SHARE-Corona Survey
- Author
-
Bassoli, Elena and Brugiavini, Agar
- Published
- 2024
- Full Text
- View/download PDF
20. ‘Triadic’ shared decision making in mental health: Experiences and expectations of service users, caregivers and clinicians in Germany
- Author
-
Florian Schuster, Fabian Holzhüter, Stephan Heres, and Johannes Hamann
- Subjects
Medicine (General) ,Motivation ,family involvement ,shared decision making ,Decision Making ,triadic decision making ,Original Research Paper ,R5-920 ,Cross-Sectional Studies ,Mental Health ,Caregivers ,quality of care ,Germany ,Humans ,Public aspects of medicine ,RA1-1270 ,Original Research Papers ,Decision Making, Shared ,caregiver - Abstract
Background Shared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users' caregivers. Aim This study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties' expectations towards the prospects of triadic SDM. Design The current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians. Results All three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver's role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases). Conclusion Triadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken. Public Contribution Early results were discussed with a local peer support group for caregivers of individuals living with mental illness.
- Published
- 2021
21. Wireless sensor technology in dementia care : Caregiver perceptions, technology take‐up and business model innovation
- Author
-
Delbreil, Elizabeth and Zvobgo, Gilbert
- Published
- 2013
- Full Text
- View/download PDF
22. The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review.
- Author
-
Hughes, Michelle, Hanna, Kerry, Wiles, Akpevwoghene, Taylor, Ellie, and Giebel, Clarissa
- Subjects
FAMILIES & psychology ,HEALTH literacy ,QUALITATIVE research ,CINAHL database ,CONTINUUM of care ,SERVICES for caregivers ,FAMILY attitudes ,EXPERIENCE ,SYSTEMATIC reviews ,MEDLINE ,THEMATIC analysis ,BURDEN of care ,MEDICAL databases ,PSYCHOLOGY of caregivers ,NEEDS assessment ,ONLINE information services ,DEMENTIA ,FAMILY support ,CAREGIVER attitudes ,DEMENTIA patients ,LEARNING disabilities ,PSYCHOLOGY information storage & retrieval systems - Abstract
Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
23. Assessing decision regret in caregivers of deceased German people with cancer—A psychometric validation of the Decision Regret Scale for Caregivers
- Author
-
Ariane Preibsch, Markus W. Haun, Alexander Schakowski, Mechthild Hartmann, and Hans-Christoph Friederich
- Subjects
Male ,confirmatory factor analysis ,Psychometrics ,Closeness ,Decision Making ,Emotions ,03 medical and health sciences ,0302 clinical medicine ,Germany ,Neoplasms ,Surveys and Questionnaires ,Criterion validity ,Humans ,cancer ,Measurement invariance ,030212 general & internal medicine ,caregiver ,lcsh:R5-920 ,aggressiveness of care ,030503 health policy & services ,lcsh:Public aspects of medicine ,Gold standard ,Public Health, Environmental and Occupational Health ,Discriminant validity ,Reproducibility of Results ,Regret ,lcsh:RA1-1270 ,Confirmatory factor analysis ,decision regret ,Original Research Paper ,measurement invariance ,Distress ,Cross-Sectional Studies ,Caregivers ,Female ,0305 other medical science ,Psychology ,lcsh:Medicine (General) ,Original Research Papers ,Clinical psychology - Abstract
Background Decisional regret during or after medical treatments is linked to significant distress. Regret affects not only patients but also caregivers having an active or passive role during decision making. The Decision Regret Scale (DRS) is a self-report measure for regret in patients after treatment decisions. However, practical and psychometrically robust instruments assessing regret in caregivers are lacking. Objective To develop and validate a caregiver version of the DRS (Decision Regret Scale for Caregivers [DRS-C]). Design Psychometric validation based on a web survey. Setting and participants 361 caregivers of deceased German people/patients with cancer. Main variables studied Besides structural validity and test-retest reliability, we evaluated measurement invariance accounting for gender, age and closeness of relationship, and tested hypotheses on convergent/discriminant validity. Results Forty-five per cent of all caregivers demonstrated decision regret. Confirmatory factor analyses strongly supported the unidimensional structure of the DRS-C and pointed to strict invariance. The DRS-C demonstrated very good internal consistency (α = 0.83, 95% CI [0.81, 0.86]) and test-retest reliability (ICC [A,1] = 0.73, 95% CI [0.59, 0.83]) along with sound convergent/discriminant validity. Concerning responsiveness, DRS-C scores remained stable over a 12-week period in 83.3% of all caregivers. Receiver operating characteristic analysis yielded a cut point of 43 for the identification of significant decision regret (AUC = 0.62, 95% CI [0.56, 0.68]). Discussion and conclusions The lack of a gold standard instrument prevented us from examining the criterion validity and determining a minimally important difference. Nevertheless, the DRS-C provides valid and reliable information regarding caregiver regret following medical decisions. Above all, it captures a crucial aspect of the treatment experience in caregivers.
- Published
- 2019
24. How Values Are Discussed, Reflected Upon, and Acted On by Patients and Family Caregivers in the Context of Heart Failure: A Scoping Review.
- Author
-
Bechthold, Avery C., Knoepke, Christopher E., Ejem, Deborah B., McIlvennan, Colleen K., Wells, Rachel D., Matlock, Daniel D., Bakitas, Marie A., and Dionne-Odom, J. Nicholas
- Abstract
Purpose: Values are critical to how individuals make decisions and cope, yet the values of heart failure (HF) patients and their family caregivers (FCGs) remain understudied. We sought to report the state of the science on how values are discussed, reflected upon, and acted on by patients with HF, their FCGs, or both related to health-related decision making and coping. Method: A scoping review was conducted of empirical studies using the following keywords: "heart failure," "values," "decision-making," and "coping." PubMed, PsycINFO, and Scopus were searched from inception to June 2022 in English. Included articles reported values as a key finding (outcome/theme) in their abstract. Results: Of 448 articles screened for eligibility, 16 met the inclusion criteria. Twelve articles reported findings addressing patient values, 3 addressed patient and FCG values, and 1 addressed FCG values. Values were reported to influence patient self-care behaviors and left ventricular assist device (LVAD) implantation decisions, although their prioritization varied across time and contexts. When prioritized values conflicted with recommended self-care activities, some patients modified their approach to achieving the value. Others modified or abandoned tasks in favor of the value and accompanying goals. Low motivation and alignment between unhealthy behaviors and values often led to nonadherent decisions. Five of 8 articles focusing on cardiac devices reported patient survival as the most prioritized value during implantation decisions. FCG values were rarely reported or evaluated separately from patient values. Patients leveraged several coping strategies, although the processes through which values affected coping was not described. Conclusions: Prioritized values influenced HF-related decisions, including self-care and LVAD implantation. While several articles reported on coping and values, none described processes through which values affect coping, which highlights a research gap. Highlights: Family caregiver values were rarely reported or evaluated separately from patient values, highlighting a gap in the literature. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
25. Caregivers of Children With Disabilities in the Northern Territory, Australia: Experiences of Educational Non-Inclusion.
- Author
-
Rheinberger, Sarah, Staley, Bea, and Nutton, Georgie
- Subjects
CHILDREN with disabilities ,CAREGIVER attitudes ,MAINSTREAMING in special education ,LEGAL literature ,INCLUSIVE education ,CAREGIVERS - Abstract
Inclusive education is enshrined in law and supported by the literature as best practice in education. Inclusive education has been shown to provide better academic, social and behavioural outcomes for children with disabilities than segregated learning environments. In the Northern Territory, Australia, however, the dual system of mainstream and special education persists and so too does segregation and exclusion. The Northern Territory education strategy commits to strengthening inclusion and empowering families in educational decision-making by listening to their voices. In this paper, we highlight some of these voices, examining the experiences and perspectives of caregivers of children with disabilities as they participate in education in the Northern Territory. Caregivers' experiences were coded into categories of inclusion and exclusion. Those that were not clearly inclusion nor exclusion were identified and the theme of non-inclusion was created. Non-inclusion was analysed thematically and is discussed as a nebulous space that exists for caregivers, presenting significant challenges that threaten their child's inclusion at school as they navigate this dual system. If Australian education systems are to provide genuine inclusive education, we need to understand the experiences of caregivers better so we can remediate the issues creating non-inclusion for children with disabilities and caregivers. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
26. Perceptions of Educational Needs in an Era of Shifting Mental Health Care to Primary Care: Exploratory Pilot Study
- Author
-
Dahn Jeong, Stephanie Sutherland, Alireza Jalali, Michael Cheng, and Mireille St-Jean
- Subjects
Original Paper ,Canada ,media_common.quotation_subject ,Medicine (miscellaneous) ,Health Informatics ,Primary care ,Computer Science Applications ,Nursing ,Perception ,Mental health care ,Preprint ,family physician ,Psychology ,mentorship ,mental health ,qualitative research ,caregiver ,media_common - Abstract
Background There is an unmet need for mental health care in Canada. Primary care providers such as general practitioners and family physicians are the essential part of mental health care services; however, mental health is often underestimated and underprioritized by family physicians. It is currently not known what is required to increase care providers’ willingness, comfort, and skills to adequately provide care to patients who present with mental health issues. Objective The aim of this study was to understand the need of caregivers (family members overseeing care of an individual with a mental health diagnosis) and family physicians regarding the care and medical management of individuals with mental health conditions. Methods A needs assessment was designed to understand the educational needs of caregivers and family physicians regarding the provision of mental health care, specifically to seek advice on the format and delivery mode for an educational curriculum to be accessed by both stakeholder groups. Exploratory qualitative interviews were conducted, and data were collected and analyzed iteratively until thematic saturation was achieved. Results Caregivers of individuals with mental health conditions (n=24) and family physicians (n=10) were interviewed. Both the caregivers and the family physicians expressed dissatisfaction with the status quo regarding the provision of mental health care at the family physician’s office. They stated that there was a need for more educational materials as well as additional support. The caregivers expressed a general lack of confidence in family physicians to manage their son’s or daughter’s mental health condition, while family physicians sought more networking opportunities to improve and facilitate the provision of mental health care. Conclusions Robust qualitative studies are necessary to identify the educational and medical management needs of caregivers and family physicians. Understanding each other’s perspectives is an essential first step to collaboratively designing, implementing, and subsequently evaluating community-based mental health care. Fortunately, there are initiatives underway to address these need areas (eg, websites such as the eMentalHealth, as well as the mentorship and collaborative care network), and information from this study can help inform the gaps in those existing initiatives.
- Published
- 2022
27. Family involvement to support cardiovascular self-management care for people with severe mental illness: a systematic review.
- Author
-
Zabeen, Sara, Phua, Delphine, Mohammadi, Leila, and Lawn, Sharon
- Subjects
SERVICES for caregivers ,CINAHL database ,PSYCHOLOGY information storage & retrieval systems ,MEDICAL databases ,PSYCHOLOGY of cardiac patients ,SELF-management (Psychology) ,FAMILY support ,CONVALESCENCE ,SYSTEMATIC reviews ,CARDIOVASCULAR diseases ,FAMILY roles ,SEVERITY of illness index ,FAMILY relations ,MEDLINE ,MENTAL illness ,COMORBIDITY - Abstract
Family members play a pivotal role in supporting cardiovascular self-management-based care of community-living adults with severe mental illness (SMI). However, little is known about what strategies caregivers employ as part of their caring roles. This paper aims to explore what caregiving strategies work (or not), why and how by collating and synthesising existing evidence on this issue. A systematic search of peer-reviewed qualitative and mixed-method studies published between 2000 and 2019 was employed. This comprehensive process generated only nine papers for subsequent meta-synthesis of qualitative data. Findings suggested that caregivers have a complex yet comprehensive role to play in initiating and perpetuating self-management-based cardiovascular care. The elements of recovery such as promoting hope, normality, autonomy and identity were flagged as critical underpinning factors that motivated the person with SMI to adopt a healthy lifestyle. However, it was evident that caregivers needed to walk alongside the person, at times, to help them reach their maximum potential in sustaining improved self-management behaviours. Caregivers sit in a favourable bridging position between healthcare systems and community-living individuals with SMI, to support their cardiovascular health. However, this powerful but invisible 'workforce' clearly needs further support involving finance, skill-development and acknowledgement. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
28. Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.
- Author
-
Dehpour, Tara and Koffman, Jonathan
- Subjects
PSYCHOLOGY information storage & retrieval systems ,CINAHL database ,MEDICAL information storage & retrieval systems ,SYSTEMATIC reviews ,DEMENTIA patients ,ANTICIPATORY grief ,PSYCHOLOGY of caregivers ,MEDLINE - Abstract
Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers – the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments. [ABSTRACT FROM AUTHOR]
- Published
- 2023
- Full Text
- View/download PDF
29. A digital mobile community app for caregivers in Singapore : predevelopment and usability study
- Author
-
Anita Sheldenkar, May O. Lwin, Chitra Panchapakesan, and Wee Kim Wee School of Communication and Information
- Subjects
internet technology ,caregiving ,elderly ,Digital media ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Mobile community ,mobile app ,Technological Solution ,medicine ,030212 general & internal medicine ,caregiver ,aging population ,Original Paper ,Medical education ,communication ,Community network ,Information seeking ,business.industry ,easy communication ,Loneliness ,Usability ,Communication [Social sciences] ,mobile application ,community network ,technological solution ,network ,Caregiving ,The Internet ,medicine.symptom ,Psychology ,business ,030217 neurology & neurosurgery - Abstract
Background With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers’ Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health–related issues of the caregiver, digital media use, information seeking, and support. This pre–app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results From the feedback garnered from the caregivers, the developers were able to identify several caregivers’ needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers’ Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions In general, the caregivers liked the Caregivers’ Circle app and were confident that this app could help them have a better quality of life. The Caregivers’ Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly.
- Published
- 2021
30. Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1)
- Author
-
Anneke L. Francke, Paul Jeroen Verkade, Iris van Asch, Rob Bm Groot Zwaaftink, Bernadette Willemse, Judith G. Huis in het Veld, Marco M. Blom, Anne Margriet Pot, Public and occupational health, APH - Quality of Care, APH - Aging & Later Life, Clinical Psychology, and APH - Mental Health
- Subjects
Male ,Coping (psychology) ,020205 medical informatics ,Health Behavior ,Psychological intervention ,Nurses ,Health Informatics ,02 engineering and technology ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,SDG 3 - Good Health and Well-being ,Surveys and Questionnaires ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,eHealth ,Humans ,Dementia ,030212 general & internal medicine ,caregiver ,Original Paper ,Self-management ,Family caregivers ,Data Collection ,Self-Management ,Process Assessment, Health Care ,Behavior change ,medicine.disease ,Telemedicine ,Caregivers ,ComputingMilieux_COMPUTERSANDSOCIETY ,Female ,internet ,Psychology ,Qualitative research ,dementia - Abstract
BackgroundCoping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.ObjectiveThe aim of this study was to understand (1) family caregivers’ actual use of various elements of the online self-management support, (2) family caregivers’ evaluation and satisfaction with the various elements, and (3) nurses’ usage and evaluations of the online support through the tailored email contacts.MethodsA mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses’ registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts.ResultsThe actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses’ evaluations about providing self-management support online were mixed as it was a relatively new task for them.ConclusionsAn important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.
- Published
- 2019
31. Validation of the Communication Profile-Adapted in Ethiopian children with neurodevelopmental disorders
- Author
-
Caterina Ceccarelli, Ioannis Bakolis, Bethlehem Tekola, Mersha Kinfe, Anton Borissov, Fikirte Girma, Rehana Abdurahman, Tigist Zerihun, Charlotte Hanlon, and Rosa A. Hoekstra
- Subjects
Original Research Paper ,psychometrics ,sub-Saharan Africa ,03 medical and health sciences ,0302 clinical medicine ,neurodevelopmental disorders ,communication disorders ,030212 general & internal medicine ,Other ,Caregiver ,030217 neurology & neurosurgery - Abstract
Background Neurodevelopmental disorders (NDDs) are conditions affecting a child's cognitive, behavioural, and emotional development. Appropriate and validated outcome measures for use in children with NDDs in sub-Saharan Africa are scarce. The aim of this study was to validate the Communication Profile Adapted (CP-A), a measure developed in East Africa to assess caregivers' perception of communication among children with NDDs. Methods We adapted the CP-A for use in Ethiopia, focusing on the communicative mode (CP-A-mode) and function (CP-A-function) scales. The CP-A was administered to a representative sample of caregivers of children with NDDs and clinical controls. We performed an exploratory factor analysis and determined the internal consistency, test-retest reliability, within-scale, known-group, and convergent validity of the identified factors. Results Our analysis included N = 300 participants (N = 139 cases, N = 139 clinical controls, N = 22 who did not meet criteria for either cases or controls). Within the CP-A-mode, we identified two factors (i.e. verbal and physical communication); the CP-A-function scale was unidimensional. Combining both scales into one summary variable (the CP-A-total) resulted in a scale with excellent internal consistency and test-retest reliability (Cronbach's alpha = 0.97; Kappa = 0.60–0.95, p < 0.001; ICC = 0.97, p < 0.001). Testing known-group validity, the CP-A-total scores were significantly higher for controls than cases (Δ mean = 33.93, p < 0.001). Convergent validity assessment indicated that scores were negatively and moderately correlated with clinical severity (ρ = −0.25, p = 0.04). Conclusion The CP-A is a valid tool for the assessment of communication among children with NDDs in Ethiopia. It holds promise as a brief, quantitative, and culturally appropriate outcome measure for use in sub-Saharan Africa.
- Published
- 2021
32. A novel mobile app ('CareFit') to support informal caregivers to undertake regular physical activity from home during and beyond COVID-19 restrictions : co-design and prototype development study
- Author
-
William Hodgson, Roma Maguire, Alison Kirk, Mark D. Dunlop, Gennaro Imperatore, and Kieren J. Egan
- Subjects
Physical fitness ,Applied psychology ,Medicine (miscellaneous) ,physical activity ,Health Informatics ,RA773 ,Scrum ,Android ,Health care ,Requirements analysis ,app ,development ,intervention ,caregiver ,Government ,Original Paper ,support ,exercise ,business.industry ,Behavior change ,Transtheoretical model ,COVID-19 ,Usability ,Computer Science Applications ,co-design ,business ,Psychology - Abstract
Background Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. Objective The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. Methods We co-designed a mobile app, “CareFit,” by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. Results Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-to-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. Conclusions Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings.
- Published
- 2021
33. Collaborative practice with parents in occupational therapy for children: A scoping review.
- Author
-
Lage, Carla R., Wright, Shelley, Monteiro, Rafaelle G. de S., Aragão, Luisa, and Boshoff, Kobie
- Subjects
- *
OCCUPATIONAL therapy for children , *PARENTS , *PARENTING education , *ACADEMIC dissertations , *OCCUPATIONAL therapy students , *CHILDREN with autism spectrum disorders , *LITERATURE reviews - Abstract
Introduction Methods Results Conclusion PLAIN LANGUAGE SUMMARY In childhood intervention, parent–therapist collaboration is central to the family‐centred approach. Despite long‐standing discussion in occupational therapy literature, the field faces challenges, including inconsistent terminology and difficulties in translating theory into practice. This paper represents the first part of a comprehensive scoping review study aimed at developing foundational concepts for collaborative practices with parents in occupational therapy for children. Therefore, this paper focusses on mapping existing practices, types, and approaches articulated in the literature.We searched English‐language sources published worldwide from 1998 to 2022 discussing collaborative practices with parents in occupational therapy for children aged 0–10 with any diagnosis, including multidisciplinary practices. Seven databases were searched. Data from peer‐reviewed indexed literature, theses and dissertations, and book chapters were extracted and analysed through basic numerical and descriptive analyses before being synthesised into similar categories. The Joanna Briggs Institute Manual and the Preferred Reporting Items for Systematic reviews and Meta‐Analysis—extension for Scoping Reviews were used.The scoping review yielded 299 papers. Parent–therapist collaboration was prominent in clinics, family homes, schools, and hospitals, particularly during therapy implementation, goal setting, and planning. Most reported practice types included ‘interventions with parent engagement’, ‘parent‐directed interventions’, and ‘parent education’. ‘Family‐centred’, ‘occupational‐focussed’, and ‘client–therapist collaborative’ approaches were frequently mentioned. There were inconsistencies in the terms used to describe collaborative practice characteristics.Over the past 24 years, the collaborative practice literature has expanded and evolved, with parent–therapist collaboration observed across various occupational therapy settings. Inconsistencies in this collaboration across different therapeutic stages were revealed, which could impact intervention success and sustainability. Further research is needed to explore parent–therapist collaboration mechanisms within and across stages. This scoping review also underscores the need for a common framework to guide practice and research.This literature review explores how occupational therapists and parents work together in childhood intervention. Collaboration is essential for understanding and meeting children's needs within their family and community settings. However, occupational therapists and parents face challenges in applying family‐centred practices and using a common language to bridge theory with practice. To address these challenges, we examined 299 papers published between 1998 and 2022 to understand how collaborative practices with parents have been described in the literature. Our review revealed that therapists and parents collaborate across various settings, such as clinics, schools, homes, and hospitals, mainly during therapy sessions, goal setting, and planning interventions. Collaborative practices take different forms. For instance, therapists often encourage parents to actively engage and take the lead in therapy, requiring therapists to recognise and respect parents' priorities and learning preferences. They often develop strategies together to support the child within family routines. While we found several studies on therapist–parent collaboration, the review outlined inconsistencies in how this practice was described and applied, which could affect its success. Therefore, more research is needed to understand the best ways in which collaboration can occur at each stage of therapy. The need for a core guideline for collaborative practice with parents in occupational therapy was also observed. While therapist–parent collaboration is used in occupational therapy for children, there is a clear need to minimise inconsistencies and gaps found in the literature, as well as to ensure a common language to promote intervention quality and success. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
34. The experience of caregiving for adults with benign brain tumors: An integrative review.
- Author
-
McDaniel, Amanda Kate, Carlson, Barbara, Dunn, Ian F, and Nipp, Ryan
- Subjects
- *
BENIGN tumors , *BRAIN tumors , *ADULTS , *CAREGIVERS , *DISEASE complications - Abstract
Background Caregiving for the adult benign brain tumor (aBBT) population is unique, as patients' extended period of survivorship poses significant challenges related to the long-term sequelae of the disease and the foreboding possibility of recurrence. In this integrative review, we examined the caregiving experience across the spectrum of the aBBT population. Methods We searched OVID, CINAHL, and PubMed databases from 2000 to 2022. We included studies primarily focused on caregivers of aBBT and written in English. Results Among 594 papers identified in the initial review, we included a final list of 7 papers. Among these 7 papers, 5 central themes emerged. First, we identified a theme surrounding psychosocial and emotional needs, which included the social isolation of caregiving. The second theme related to informational care needs, including what is considered to be the normal course of recovery after surgery. The third theme focused on access to services, including specialist neurosurgical care, and the fourth theme related to financial strain and the economic burdens associated with long-term follow-up. Lastly, we found a theme surrounding family role changes, which included the shift from spouse to caregiver. Conclusions In this review, we identified themes highlighting similarities to the high-grade glioma population. However, we uncovered distinct differences in terms of caregiver characteristics, length of survivorship, and the burden of caregiving over time. Collectively, our findings underscore the incomplete understanding of the caregiving experience across the spectrum of the aBBT population. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
35. A Systematic Review of Quality of Life in Patients with Short Bowel Syndrome and Their Caregivers.
- Author
-
Chen, Ying, Yan, Mengxia, Chen, Haoyan, Sheng, Yanan, Wang, Zhenhua, and Wu, Bin
- Subjects
SHORT bowel syndrome ,CAREGIVERS ,QUALITY of life ,PHYSICAL mobility ,SMALL intestine - Abstract
Purpose: Understanding the quality of life and the factors that influence it for patients with short bowel syndrome (SBS) and their caregivers is of utmost importance in order to enhance their well-being. Therefore, This study aimed to provide a comprehensive understanding of the impact of SBS on patients and their caregivers, as well as its associated factors, by synthesizing the available evidence. Methods: A systematic review of the literature was done using PubMed, Embase databases, CNKI, and ISPOR conference papers. Included articles were manually searched to identify any other relevant studies. Quality was assessed using appropriate Joanna Briggs Institute critical appraisal tools. Results: This review included 16 studies, comprising 15 observational studies and 1 randomized controlled trial. The findings revealed that the QoL of patients with SBS was lower than that of the general population regarding physical functioning and psychological domain. Meanwhile, caregivers experienced challenges in maintaining their QoL. The QoL of SBS patients was found to be influenced by various factors such as treatment, age, sex, stoma, and small intestine length. Among them, the treatment is the most noteworthy factor that can be effectively improved through external interventions. Conclusion: While numerous studies have provided insights into the compromised QoL experienced by individuals with SBS and their caregivers, there remains a scarcity of large-sample quantitative investigations examining the determinants of QoL. The existing body of literature on caregivers is also notably deficient. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
36. 'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.
- Author
-
Price, Jayne, Hurley, Fiona, and Kiernan, Gemma
- Abstract
Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. 'Managing an unexpected life' was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child's condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of 'Managing an unexpected life' helping us enhance our understanding of parents' experiences: 'Striving for normality', 'Becoming the expert' and 'Fighting for your child'. Findings suggest that the central concept of 'Managing an unexpected life' appeared to be in keeping with a caregiver's career. Findings likewise suggest the need for improved and focused support and services to enhance parents' career caregiving. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
37. Coaching as a method of support for informal and formal caregivers in palliative care.
- Author
-
Sułkowska, Joanna, Kuźmicz, Ilona, Kawalec-Kajstura, Ewa, Palmer, Stephen, and Brzostek, Tomasz
- Subjects
CAREGIVER attitudes ,PALLIATIVE treatment ,SELF-efficacy ,CAREGIVER education ,EDUCATIONAL programs - Abstract
Literature suggests that palliative care professionals and informal caregivers could be at risk of side effects of active participation in care. Therefore, different methods of support that can be offered to carers should be sought. Coaching is an intervention that facilitates another person to learn, grow and take responsibility for the level to which results are achieved. There are arguments which indicate the possibility and need to use coaching interventions to support nurses in their development and daily practice. Moreover, coaching can be used to implement interventions to improve informal caregivers’ knowledge and skills, as well as to increase their sense of self-efficacy and psychological resilience. Consequently, this paper is aimed at introducing coaching as a method for enhancing work and well-being among formal and informal carers, especially in palliative care. Coaching might be an appropriate approach in the context of palliative care. Regarding end-of-life care and its complexity, it is worth considering implementing it as a part of an interdisciplinary program. Consequently, it would be tailored to caregivers’ needs. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
38. Development of a Mobile Health App (TOGETHERCare) to Reduce Cancer Care Partner Burden: Product Design Study
- Author
-
Oxana Palesh, Michelle Longmire, Sharon Davis, Rachel J. Mesia, Jena Daniels, Allison W. Kurian, Lisa G. Rosas, Vasu Divi, Ingrid Oakley-Girvan, and Arif H. Kamal
- Subjects
medicine.medical_specialty ,cancer survivor ,symptom reporting ,Medicine (miscellaneous) ,Health Informatics ,smartphone ,Underserved Population ,mobile app ,medicine ,cancer ,Mobile technology ,mHealth ,caregiver ,Cancer survivor ,Original Paper ,caregiver burden ,business.industry ,Usability ,Caregiver burden ,Computer Science Applications ,Test (assessment) ,Family medicine ,oncology ,Anxiety ,medicine.symptom ,business ,feasibility - Abstract
Background Approximately 6.1 million adults in the United States serve as care partners for cancer survivors. Studies have demonstrated that engaging cancer survivors and their care partners through technology-enabled structured symptom collection has several benefits. Given the high utilization of mobile technologies, even among underserved populations and in low resource areas, mobile apps may provide a meaningful access point for all stakeholders for symptom management. Objective We aimed to develop a mobile app incorporating user preferences to enable cancer survivors’ care partners to monitor the survivors’ health and to provide care partner resources. Methods An iterative information gathering process was conducted that included (1) discussions with 138 stakeholders to identify challenges and gaps in survivor home care; (2) semistructured interviews with clinicians (n=3), cancer survivors (n=3), and care partners (n=3) to identify specific needs; and (3) a 28-day feasibility field test with seven care partners. Results Health professionals noted the importance of identifying early symptoms of adverse events. Survivors requested modules on medication, diet, self-care, reminders, and a version in Spanish. Care partners preferred to focus primarily on the patient’s health and not their own. The app was developed incorporating quality-of-life surveys and symptom reporting, as well as resources on home survivor care. Early user testing demonstrated ease of use and app feasibility. Conclusions TOGETHERCare, a novel mobile app, was developed with user input to track the care partner’s health and report on survivor symptoms during home care. The following two clinical benefits emerged: (1) reduced anxiety among care partners who use the app and (2) the potential for identifying survivor symptoms noted by the care partner, which might prevent adverse events. Trial Registration ClinicalTrials.gov NCT04018677; https://clinicaltrials.gov/ct2/show/NCT04018677
- Published
- 2021
39. Tobacco use and related behaviors among staff and students in a university hospital: A large cross-sectional survey
- Author
-
Emmanuel Grolleau, Véronique Fonteille, Caroline Lebourgeois, Marie Darrason, Philippe Michel, Delphine Ragonnet, Gilles Freyer, Amélie Deculty, Carine Gippet, Céline Leclerq, Carole Neugnot, Radoudja Malek, Odile Perdriolat, Michele Rigaud, Séverine Torrecillas, Maud-Catherine Barral, Pierre-Jean Souquet, Jean-Baptiste Fassier, Lénaïck Tanguy, Benjamin Rolland, Sébastien Couraud, and for the Hospices Civils de Lyon COLT committee
- Subjects
medicine.medical_specialty ,Health (social science) ,Tobacco use ,Multivariate analysis ,Epidemiology ,Cross-sectional study ,media_common.quotation_subject ,Population ,education ,e-cigarette ,Health Professions (miscellaneous) ,tobacco ,Medicine ,caregiver ,media_common ,education.field_of_study ,business.industry ,Public Health, Environmental and Occupational Health ,Univariate ,University hospital ,Feeling ,medical student ,Family medicine ,Cohort ,Public aspects of medicine ,RA1-1270 ,business ,tobacco quitting ,Research Paper - Abstract
Introduction Smoking prevalence in the overall population in France was 27% in 2017. There are few data about smoking prevalence in hospital workers. The aim of this study was to assess prevalence of current smoking in student and staff populations at Lyon University Hospital. Secondary objectives were to identify main variables associated with current smoking and willingness to quit. Methods We designed a single center, cross-sectional survey, using printed questionnaires. During one day, all registered staff and students were surveyed. We used optical reading to extract information from questionnaires. We performed univariate and multivariate analysis adjusted on most relevant factors. Results We analyzed 9712 questionnaires. The participating rates were high: 40.6% in the student cohort and 51.5% in the staff cohort. The proportion of current cigarette users was 26% in students and 25% in staff. In multivariate analysis, current smoking was significantly associated with: younger age, male sex, occupation type (e.g. logistical staff, and paramedical students), overnight work, and e-cigarette use. Among smokers, 53% reported a willingness to quit. In multivariate analysis, number of quit attempts, and feeling symptoms from tobacco were associated with willingness to quit. Conclusions Current smoking is less frequent in our cohorts of hospital staff and students than in the general French population. However, there are deep disparities in current smoking prevalence underlining a heterogeneous population. Among smokers, the majority reported a willingness to quit and some predictive factors may help to target this audience.
- Published
- 2021
40. A Care Knowledge Management System Based on an Ontological Model of Caring for People With Dementia: Knowledge Representation and Development Study
- Author
-
Gyungha Kim, Hwawoo Jeon, Sung-Kee Park, Yong Suk Choi, and Yoonseob Lim
- Subjects
Knowledge management ,Knowledge representation and reasoning ,semantic reasoning ,Computer applications to medicine. Medical informatics ,R858-859.7 ,ComputingMethodologies_IMAGEPROCESSINGANDCOMPUTERVISION ,Health Informatics ,Ontology (information science) ,03 medical and health sciences ,0302 clinical medicine ,caregiver for person with dementia ,Surveys and Questionnaires ,Republic of Korea ,medicine ,Dementia ,Humans ,030212 general & internal medicine ,ontology ,Semantic Web ,knowledge model ,caregiver ,Original Paper ,business.industry ,Caring for people with dementia ,Usability ,Semantic reasoner ,medicine.disease ,Knowledge sharing ,Knowledge Management ,Caregivers ,ComputingMilieux_COMPUTERSANDSOCIETY ,Public aspects of medicine ,RA1-1270 ,business ,Psychology ,030217 neurology & neurosurgery - Abstract
Background Caregivers of people with dementia find it extremely difficult to choose the best care method because of complex environments and the variable symptoms of dementia. To alleviate this care burden, interventions have been proposed that use computer- or web-based applications. For example, an automatic diagnosis of the condition can improve the well-being of both the person with dementia and the caregiver. Other interventions support the individual with dementia in living independently. Objective The aim of this study was to develop an ontology-based care knowledge management system for people with dementia that will provide caregivers with a care guide suited to the environment and to the individual patient’s symptoms. This should also enable knowledge sharing among caregivers. Methods To build the care knowledge model, we reviewed existing ontologies that contain concepts and knowledge descriptions relating to the care of those with dementia, and we considered dementia care manuals. The basic concepts of the care ontology were confirmed by experts in Korea. To infer the different care methods required for the individual dementia patient, the reasoning rules as defined in Semantic Web Rule Languages and Prolog were utilized. The accuracy of the care knowledge in the ontological model and the usability of the proposed system were evaluated by using the Pellet reasoner and OntOlogy Pitfall Scanner!, and a survey and interviews were conducted with caregivers working in care centers in Korea. Results The care knowledge model contains six top-level concepts: care knowledge, task, assessment, person, environment, and medical knowledge. Based on this ontological model of dementia care, caregivers at a dementia care facility in Korea were able to access the care knowledge easily through a graphical user interface. The evaluation by the care experts showed that the system contained accurate care knowledge and a level of assessment comparable to normal assessment tools. Conclusions In this study, we developed a care knowledge system that can provide caregivers with care guides suited to individuals with dementia. We anticipate that the system could reduce the workload of caregivers.
- Published
- 2021
41. Systematic review of caregiver responses for patient health-related quality of life in adult cancer care.
- Author
-
Roydhouse, Jessica, Wilson, Ira, Roydhouse, Jessica K, and Wilson, Ira B
- Subjects
CANCER patient medical care ,CAREGIVERS ,QUALITY of life ,SYSTEMATIC reviews ,MEDICAL care surveys ,TUMORS & psychology ,GUARDIAN & ward ,PSYCHOLOGY of caregivers ,RESEARCH funding ,SICKNESS Impact Profile ,CROSS-sectional method ,PSYCHOLOGY - Abstract
Purpose: In surveys and in research, proxies such as family members may be used to assess patient health-related quality of life. The aim of this research is to help cancer researchers select a validated health-related quality of life tool if they anticipate using proxy-reported data.Methods: Systematic review and methodological appraisal of studies examining the concordance of paired adult cancer patient and proxy responses for multidimensional, validated HRQOL tools. We searched PubMed, CINAHL, PsycINFO and perused bibliographies of reviewed papers. We reviewed concordance assessment methods, results, and associated factors for each validated tool.Results: A total of 32 papers reporting on 29 study populations were included. Most papers were cross-sectional (N = 20) and used disease-specific tools (N = 19), primarily the FACT and EORTC. Patient and proxy mean scores were similar on average for tools and scales, with most mean differences <10 points but large standard deviations. Average ICCs for the FACT and EORTC ranged from 0.35 to 0.62, depending on the scale. Few papers (N = 15) evaluated factors associated with concordance, and results and measurement approaches were inconsistent. The EORTC was the most commonly evaluated disease-specific tool (N = 5 papers). For generic tools, both concordance and associated factor information was most commonly available for the COOP/WONCA (N = 3 papers). The MQOL was the most frequently evaluated end-of-life tool (N = 3 papers).Conclusions: Proxy and patient scores are similar on average, but there is large, clinically important residual variability. The evidence base is strongest for the EORTC (disease-specific tools), COOP/WONCA (generic tools), and MQOL (end-of-life-specific tools). [ABSTRACT FROM AUTHOR]- Published
- 2017
- Full Text
- View/download PDF
42. The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.
- Author
-
Finucane, Anne M., Lugton, Jean, Kennedy, Catriona, and Spiller, Juliet A.
- Subjects
CAREGIVERS ,DELIRIUM ,PALLIATIVE treatment ,TERMINALLY ill ,COGNITION disorders ,PSYCHOLOGY of caregivers ,PSYCHOLOGY of the terminally ill ,SYSTEMATIC reviews ,PSYCHOLOGICAL factors - Abstract
Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review.Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2017
- Full Text
- View/download PDF
43. Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study
- Author
-
Lilian Yahng, Sung Won Choi, Minakshi Raj, Vibhuti Gupta, Flora Hoodin, and Thomas Braun
- Subjects
Cancer Research ,medicine.medical_specialty ,Coping (psychology) ,EHR ,online portal ,Patient advocacy ,03 medical and health sciences ,0302 clinical medicine ,Intervention (counseling) ,Medicine ,cancer ,survey ,transplant ,030212 general & internal medicine ,Cognitive interview ,app ,caregiver ,RC254-282 ,mobile apps ,Original Paper ,business.industry ,Family caregivers ,questionnaire ,Patient portal ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,electronic health record ,Transplantation ,stem cell ,Oncology ,030220 oncology & carcinogenesis ,Family medicine ,hematopoietic stem cell transplantation ,Anxiety ,medicine.symptom ,business ,management - Abstract
Background As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID) RR2-10.2196/4918
- Published
- 2021
44. Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study
- Author
-
Miriana C Duran, Chester Pabiniak, Linda Teri, Kelly Hansen, Susan M. McCurry, Robert B. Penfold, Magaly Ramirez, James D. Ralston, and Ann Kelley
- Subjects
caregivers ,Health (social science) ,020205 medical informatics ,behavioral symptoms ,media_common.quotation_subject ,digital health ,Health Informatics ,02 engineering and technology ,psychology ,lcsh:Geriatrics ,03 medical and health sciences ,Face-to-face ,0302 clinical medicine ,Nursing ,virtual care ,Intervention (counseling) ,Health care ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,Personality ,Dementia ,030212 general & internal medicine ,caregiver ,intervention ,media_common ,Original Paper ,education ,training ,Modalities ,behavior ,business.industry ,Family caregivers ,internet-based intervention ,medicine.disease ,symptom ,Digital health ,lcsh:RC952-954.6 ,qualitative ,Alzheimer disease ,Geriatrics and Gerontology ,business ,Psychology ,Gerontology ,dementia - Abstract
Background Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.
- Published
- 2021
45. A Mobile App–Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial
- Author
-
Laia Raigal-Aran, Teresa Lluch-Canut, Mar Lleixà-Fortuño, Núria Albacar-Riobóo, Montserrat Puig-Llobet, Jael Lorca-Cabrera, Maria Dolores Miguel-Ruiz, Carme Ferré-Grau, and Maria Ferré-Bergadà
- Subjects
Male ,Activities of daily living ,020205 medical informatics ,health promotion ,02 engineering and technology ,Burnout ,law.invention ,0302 clinical medicine ,Randomized controlled trial ,nursing ,law ,Surveys and Questionnaires ,Outcome Assessment, Health Care ,0202 electrical engineering, electronic engineering, information engineering ,030212 general & internal medicine ,caregiver ,clinical trial ,Caregiver burden ,Middle Aged ,Mobile Applications ,Mental Health ,Caregivers ,technology ,Female ,Smartphone ,Adult ,medicine.medical_specialty ,caregiving ,Health Informatics ,03 medical and health sciences ,Young Adult ,positive mental health ,Intervention (counseling) ,medicine ,Humans ,mobile phone app ,mobile health ,Aged ,Original Paper ,Motivation ,business.industry ,Infant ,Mental health ,Clinical trial ,Health promotion ,intervention program ,randomized controlled trial ,Physical therapy ,Quality of Life ,business ,Program Evaluation - Abstract
Background While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective The aim of this study was to evaluate the effectiveness of a smartphone app–based intervention program to increase positive mental health for nonprofessional caregivers. Methods This study was a randomized controlled trial of 3 months’ duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months’ experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users’ satisfaction was also measured. Results In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1–Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P Conclusions The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app–based intervention programs may be useful tools for increasing nonprofessional caregivers’ well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID) RR2-10.1186/s12889-019-7264-5
- Published
- 2021
46. Living alone for people on dementia medication: related use of drugs
- Author
-
A. Peter Passmore, Bernadette McGuinness, Alan J McMichael, and Evi Zafeiridi
- Subjects
Gerontology ,Male ,Aging ,living arrangements ,Northern Ireland ,Northern ireland ,Logistic regression ,Affect (psychology) ,Residence Characteristics ,mental disorders ,medicine ,Dementia ,Humans ,Donepezil ,caregiver ,Aged ,National health ,Aged, 80 and over ,treatment ,business.industry ,Cell Biology ,medicine.disease ,Comorbidity ,Caregivers ,Honest Broker ,Female ,medication ,business ,medicine.drug ,Research Paper - Abstract
Approximately one-third of people with dementia in the United Kingdom live alone. People living alone with dementia may receive different treatment for dementia and may have different comorbidities compared to people who live with a caregiver. This study explored differences in medication and demographic characteristics between people living alone with dementia and those living with a caregiver in Northern Ireland. People with dementia were identified through the first date that a dementia management medication was prescribed between 2010 and 2016. In total, 25,418 people were prescribed a dementia management medication. Data for whether people with dementia lived alone was extracted through the National Health Application and Infrastructure Services and from national datasets through the Honest Broker Service. Approximately 35% (n= 8,828) of people with dementia in Northern Ireland lived alone. People with dementia who lived alone were younger (mean= 75 years, SD= 8.50) compared to people who lived with a caregiver (mean= 77 years, SD= 7.82). Binary logistic regression highlighted that people who lived alone were more likely to be treated with donepezil medication for dementia and less likely to receive antidepressants. These findings indicate that living alone did not affect treatment for dementia and comorbidity medication in people on dementia medication.
- Published
- 2020
47. Considerations for paediatric student‐led telepractice in speech‐language therapy: A pilot observational study from South Africa.
- Author
-
Watermeyer, Jennifer, Nattrass, Rhona, Beukes, Johanna, Madonsela, Sonto, and Scott, Megan
- Subjects
- *
SPEECH therapists , *QUALITATIVE research , *OCCUPATIONAL adaptation , *MEDICAL technology , *RESEARCH funding , *HEALTH occupations students , *PILOT projects , *SCIENTIFIC observation , *UNIVERSITIES & colleges , *DIGITAL divide , *SOCIAL role , *DESCRIPTIVE statistics , *PEDIATRICS , *STUDENTS , *TELEMEDICINE , *THEMATIC analysis , *CLIENT relations , *INFORMATION literacy , *RESEARCH , *RESOURCE-limited settings , *SOCIAL support , *INTERNET service providers , *SPEECH therapy , *VIDEO recording - Abstract
Background: COVID‐19 necessitated emergency telepractice for student‐led speech‐language therapy clinical practicals in training institutions, with limited preparation and evidence‐based guidelines. Beyond the pandemic, practitioners and university training sites are likely to continue to offer telepractice necessitating thorough preparation for telepractice services underpinned by a comprehensive understanding of the complexities involved in online therapy. Aims: Adopting realist evaluation principles, our aim in this paper was to explore broadly what works and does not work in a set of student‐led telepractice sessions in a diverse, resource‐limited context. The broader goal of this project was to provide evidence‐based support to enhance the efficiency and success of telepractice sessions in student clinical training contexts. Methods & Procedures: We used qualitative observational methods with reflexive thematic analysis to analyse 28 video recordings and 61 observation notes of student‐led paediatric telepractice sessions from a South African university clinic as part of a pilot study. Outcomes & Results: We identified four overarching considerations for student‐led telepractice: (1) additional, specific preparation is required, (2) with greater management of technology and adaptation of tasks, especially during times of poor connectivity; (3) telepractice relies heavily on caregiver input and collaboration; and (4) promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical skills that are complicated by the lack of face‐to‐face contact. Conclusions & Implications: Our findings indicate that telepractice pedagogy needs to be explicitly taught and students require practical assistance as they learn how to use this service delivery approach effectively. There are some aspects peculiar to telepractice that require unique consideration and planning, especially in contexts where service providers and users may be unfamiliar with this form of service provision. The findings of this pilot study can be used by clinical educators and student clinicians to enhance clinical training opportunities involving telepractice. WHAT THIS PAPER ADDS: What is already known on this subject: Many speech‐language therapy (SLT) student clinicians had to transition quickly to telepractice service provision during COVID‐19 with limited existing guidelines and support, especially in contexts where teletherapy is typically non‐existent or difficult to access. Although there is some literature available on experiences of telepractice, there is very little evidence‐based research which explores the mechanics of such sessions in real‐time and which offers practical support to student clinicians and clinical educators engaging in this mode of service delivery. What this study adds: This pilot study examined video‐recorded, student‐led, paediatric, speech‐language teletherapy sessions to understand challenges and considerations involved in using telepractice as a clinical training tool. Findings show that additional preparation for telepractice sessions is required, particularly in contexts of poor digital literacy; students must learn to manage technology, especially when connectivity poses a challenge, and adapt therapy tasks for online work with clients; telepractice relies heavily on caregiver input and collaboration, more so than in in‐person consultations, and this relationship requires careful management; and promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical yet challenging skills in telepractice. What are the potential or actual clinical implications of this work?: Our findings highlight a need to teach telepractice pedagogy explicitly and support students practically in learning how to provide therapy effectively via this mode of service delivery. Observational methods for studying practices in recorded telepractice sessions can be used as part of a reflective approach to clinical training. Using already available data allowed us to unpack the 'messy reality' of clinical training using telepractice. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
48. A feasibility study of a manualized resilience-based telehealth program for persons with multiple sclerosis and their support partners
- Author
-
Kim T. Mueser, Damian Fiore, Elizabeth J. Halstead, and Victoria M Leavitt
- Subjects
Gerontology ,030506 rehabilitation ,telehealth ,education ,Protective factor ,Telehealth ,Disease ,Multiple sclerosis ,03 medical and health sciences ,Cellular and Molecular Neuroscience ,0302 clinical medicine ,Quality of life (healthcare) ,Intervention (counseling) ,medicine ,Resilience (network) ,resilience ,caregiver ,intervention ,support ,business.industry ,Stressor ,medicine.disease ,Original Research Paper ,quality of life ,Neurology (clinical) ,0305 other medical science ,business ,030217 neurology & neurosurgery - Abstract
Background Resilience is a protective factor that emerges when individuals are faced with challenges and stressors. Multiple sclerosis (MS) is a chronic neurological disease that introduces a great deal of stress for the individual and his/her support partner. We designed a telehealth resilience-building dyadic program for persons with MS (PwMS) and their support partners. Objectives To evaluate the feasibility of the resilience intervention. The secondary objective was to assess the benefits of the intervention. Methods Sixty-two participants ( M = 49.5 years, 31 dyads of PwMS) and support partners) were recruited to participate. Out of the 31 dyads, 26 were spouses, 2 were cohabiting partners, and 3 were parent–child dyads. Results The feasibility goals of the intervention were met, as determined by high participant satisfaction and acceptable completion rates. Preliminary outcomes relating to resilience were positive, suggesting that this intervention had a positive impact on participants. Conclusions To the best of our knowledge, this is the first resilience-building intervention delivered via telehealth for both PwMS and their support partners. The study showed an increase in resilience-building skills for addressing the challenges faced by PwMS and their support partners. These skills can be promoted and taught, clinically supported by telehealth, an affordable, accessible healthcare solution. Trial Registration at ClinicalTrials.gov (NCT03555253).
- Published
- 2020
49. Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial
- Author
-
Craig A. Olsson, Delyse Hutchinson, Tanja Capic, Robert A. Cummins, Keriann Little, Matthew Fuller-Tyszkiewicz, Sarah Khor, Samantha Teague, Linda Hartley-Clark, and Ben Richardson
- Subjects
medicine.medical_specialty ,020205 medical informatics ,Psychological intervention ,02 engineering and technology ,law.invention ,03 medical and health sciences ,Social support ,0302 clinical medicine ,Randomized controlled trial ,Quality of life ,law ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,Psychology ,030212 general & internal medicine ,mHealth ,psychological stress ,caregiver ,Original Paper ,mobile phone ,Family caregivers ,business.industry ,medicine.disease ,BF1-990 ,Clinical trial ,Psychiatry and Mental health ,Physical therapy ,Caregiver stress ,business ,mental health - Abstract
Background Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app–based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being. Objective This study aims to evaluate the effectiveness of a self-guided mobile app–based psychological intervention for people providing care to family or friends with a physical or mental disability. Methods In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed. Results In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=−2.07; P=.04) and depressive symptoms (b=−1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=−1.82; P=.03) and higher levels of emotional well-being (b=6.13; P Conclusions This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design. Trial Registration Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170
- Published
- 2020
50. Perspectives From Municipality Officials on the Adoption, Dissemination, and Implementation of Electronic Health Interventions to Support Caregivers of People With Dementia: Inductive Thematic Analysis
- Author
-
Frans R.J. Verhey, Marja Y. Veenstra, Mignon Chloë Philomela Schichel, Hannah Liane Christie, Huibert Tange, Marjolein E. de Vugt, RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, Psychiatrie & Neuropsychologie, Family Medicine, RS: CAPHRI - R6 - Promoting Health & Personalised Care, and MUMC+: MA Med Staf Spec Psychiatrie (9)
- Subjects
Health (social science) ,020205 medical informatics ,Brand awareness ,media_common.quotation_subject ,senior friendly communities ,Psychological intervention ,Health Informatics ,Context (language use) ,02 engineering and technology ,lcsh:Geriatrics ,implementation, senior friendly communities ,03 medical and health sciences ,0302 clinical medicine ,Nursing ,Intervention (counseling) ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,eHealth ,Dementia ,030212 general & internal medicine ,implementation ,caregiver ,media_common ,Original Paper ,Enthusiasm ,medicine.disease ,lcsh:RC952-954.6 ,internet ,Geriatrics and Gerontology ,Thematic analysis ,Psychology ,Gerontology ,dementia - Abstract
BackgroundVery few evidence-based electronic health (eHealth) interventions for caregivers of people with dementia are implemented into practice. As part of a cross-border collaboration focusing on dementia and depression in older people, two eHealth interventions for caregivers of people with dementia (“Myinlife” and “Partner in Balance”) were adopted by nine municipalities in the Euregion Meuse-Rhine.ObjectiveThis study aimed to (1) identify determinants for the implementation of eHealth interventions for caregivers of people with dementia in a municipality context and (2) formulate implementation strategies for these interventions.MethodsEight municipality officials were interviewed using open-ended, semistructured interviews about their background, thoughts on the implementation of the intervention, recommended strategies, and thoughts on eHealth in general. One additional municipality discontinued the implementation project and submitted answers to the interview questions via email. The interviews were transcribed and independently analyzed using inductive thematic analysis.ResultsThe interviews provided information on the perspectives of municipality officials on implementing eHealth for caregivers of people with dementia in their local communities. Key findings from the inductive thematic analysis included the importance of face-to-face interviews in developing tailor-made implementation plans, the need for regular meetings, the enthusiasm of municipality officials to implement these interventions, the need for long-term sustainability planning through collecting data on the required resources and benefits, and the effect of name brand recognition in adoption.ConclusionsThe findings contribute toward filling the previously identified gap in the literature on the implementation context of eHealth interventions for caregivers of people with dementia. Municipality officials’ views indicated which implementation determinants they expected would influence the adoption, dissemination, and future implementation of eHealth interventions for caregivers of people with dementia in a municipal context. These insights were applied to tailored implementation strategies to facilitate the future implementation of interventions such as Myinlife and Partner in Balance.
- Published
- 2020
Discovery Service for Jio Institute Digital Library
For full access to our library's resources, please sign in.