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Article ; Online: Tele-health interventions to support self-management in adults with rheumatoid arthritis: a systematic review.

MacIver, Alison / Hollinger, Hannah / Carolan, Clare

2021 Volume 41, Issue 8, Page(s) 1399–1418

Abstract: Rheumatoid arthritis (RA), a long-term auto-immune condition is a challenging condition for patients to manage. Goals of treatment include reducing pain, decreasing inflammation, and improving an individual's overall function. Increasingly technology is ... ...

Abstract	Rheumatoid arthritis (RA), a long-term auto-immune condition is a challenging condition for patients to manage. Goals of treatment include reducing pain, decreasing inflammation, and improving an individual's overall function. Increasingly technology is being utilised to support patients to self-manage their condition. The aim of this systematic narrative review was to synthesise and critically appraise published evidence concerning the effectiveness of tele-health interventions to support self-management in RA. Bibliographic databases searched from 2014 to March 2020 included MedLINE, Embase, Cochrane Library. Search strategy combined the following concepts: (1) rheumatoid arthritis, (2) tele-health interventions, and (3) self-management. Only randomised controlled trials (RCTs) involving adults with RA were included. Titles, abstracts, full-text articles were screened, any discrepancies were checked by a second reviewer. Risk of bias was assessed using Cochrane risk of bias tool and data were extracted utilising the Cochrane data collection form for RCT interventions along with the TiDier checklist. Due to high heterogeneity, results were not meta-analysed and instead data were synthesised narratively. The search identified 98 articles, seven were included. The completed RCTs varied in the nature of the interventions, duration/severity of RA, outcomes measured and effectiveness of the interventions. The completed RCTs included a total of 791 participants Disease duration was largely between 4 and 10 years and disease severity on average was moderate. There was extensive variation in intervention components, theories underpinning theories and outcomes measured. Five RCTs reported a positive effect on factors such as disease activity, medication adherence, physical activity and self-efficacy levels. This study suggests that tele-health interventions that are well-designed, tailored and multi-faceted can help to achieve positive self-management outcomes in RA. None of the studies showed evidence of harm.
MeSH term(s)	Adult ; Arthritis, Rheumatoid/therapy ; Humans ; Outcome Assessment, Health Care ; Quality of Life ; Randomized Controlled Trials as Topic ; Self-Management/methods ; Telemedicine/methods
Language	English
Publishing date	2021-06-16
Publishing country	Germany
Document type	Journal Article ; Systematic Review
ZDB-ID	8286-7
ISSN	1437-160X ; 0172-8172
ISSN (online)	1437-160X
ISSN	0172-8172
DOI	10.1007/s00296-021-04907-2
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Philosophy and practice of advance care planning in Scotland.

Carolan, Clare M

BMJ (Clinical research ed.)

2013 Volume 347, Page(s) f6793

MeSH term(s)	Advance Care Planning ; Humans
Language	English
Publishing date	2013-11-12
Publishing country	England
Document type	Comment ; Letter
ZDB-ID	1362901-3
ISSN	1756-1833 ; 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
ISSN (online)	1756-1833
ISSN	0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
DOI	10.1136/bmj.f6793
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Book ; Online: Researching Emotional Distress and Help-Seeking for Distress in Families in Palliative Care Using Multi-Perspective Interviewing

Carolan, Clare M

2017

Abstract: In 2011, I began my PhD, which sought to understand experiences of emotional distress and help-seeking for distress among families with one member in palliative care. Findings from the systematic review that I conducted during the early stages of my PhD ... ...

Author's details	Clare M. Carolan
Abstract	In 2011, I began my PhD, which sought to understand experiences of emotional distress and help-seeking for distress among families with one member in palliative care. Findings from the systematic review that I conducted during the early stages of my PhD supported conceptualization of distress in families as a systemic construct, meaning that distress in one family member has recursive and iterative impact(s) on another/others. However, the findings also revealed that research to date had primarily focused on the individual experience of the patient or the primary caregiver. Explanatory frameworks to inform our understanding of distress were limited, and there was a paucity of research informed by family systems theories. Informed from these findings, I conducted a multiple case study of families, seeking to gather multiple perspectives from within each family. This research methods case study provides an account of some aspects of conducting a multiple case study with multiple family members within each family and focuses on the particular challenges associated with conducting multi-perspective interviewing. The methodological implications of employing such a research approach and the practicalities of using this method are considered. Finally, practical lessons to guide future researchers employing this method are offered.
Keywords	Distress (Psychology)/Research ; Palliative treatment/Research
Language	English
Size	1 online resource
Publisher	Sage Publications Ltd
Publishing place	Place of publication not identified
Document type	Book ; Online
Note	Title from content provider. ; Access restricted to subscribing institutions.
ISBN	9781526405425 ; 1526405423
DOI	10.4135/9781526405425
Database	NAL-Catalogue (AGRICOLA)

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Article: Last Aid Training Online: Participants' and Facilitators' Perceptions from a Mixed-Methods Study in Rural Scotland.

Macaden, Leah / Broadfoot, Kirsten / Carolan, Clare / Muirhead, Kevin / Neylon, Siobhan / Keen, Jeremy

Healthcare (Basel, Switzerland)

2022 Volume 10, Issue 5

Abstract: 1) Background: Palliative and end-of-life care services are increasingly gaining centre stage in health and social care contexts in the UK and globally. Death and dying need are relational processes. Building personal and community capacity along with ... ...

Abstract	(1) Background: Palliative and end-of-life care services are increasingly gaining centre stage in health and social care contexts in the UK and globally. Death and dying need are relational processes. Building personal and community capacity along with resilience is vital to support families and communities to normalise death and dying. Last Aid Training (LAT) is one such innovative educational initiative which teaches the general public about the fundamentals of palliative care and promotes public discussion about death and dying. The Highland Hospice [HH] in Scotland has pioneered delivery of LAT in face-to-face settings since March 2019 and online since March 2020 to accommodate pandemic restrictions. (2) Methods: This study used a mixed-methods approach, combining an online survey with LAT participants followed by individual semi-structured qualitative interviews with both LAT participants and facilitators. The primary aim of this study was to investigate the impacts of LAT for participants at the individual, family, and community levels, as well as explore participant and facilitator experiences and perspectives of LAT in an online environment. (3) Results: Overall, this evaluation demonstrates that provision of foundational death literacy education in social contexts enhances the personal knowledge, skills, and confidence of individual community members and supports the notion that this personal growth could lead to strengthened community action. (4) Conclusions: Findings from this study concluded that there is potential to include LAT as the foundational core training to promote death literacy in communities with further exploration to integrate/align LAT with other national/global end-of-life care frameworks.
Language	English
Publishing date	2022-05-16
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2721009-1
ISSN	2227-9032
ISSN	2227-9032
DOI	10.3390/healthcare10050918
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Care home workers experiences of stress and coping during COVID-19 pandemic: A mixed methods study.

Beattie, Michelle / Carolan, Clare / Macaden, Leah / Maciver, Alison / Dingwall, Lindsay / Macgilleeathain, Rebecah / Schoultz, Mariyana

Nursing open

2022 Volume 10, Issue 2, Page(s) 687–703

Abstract: Aim: The aim of the study was to explore the stress and coping experiences of healthcare workers (HCWs) in care home settings in Scotland during the COVID-19 pandemic.: Design: A cross-sectional mixed methods study was conducted using an online ... ...

Abstract	Aim: The aim of the study was to explore the stress and coping experiences of healthcare workers (HCWs) in care home settings in Scotland during the COVID-19 pandemic. Design: A cross-sectional mixed methods study was conducted using an online survey and interviews. Methods: Mean scores were calculated for both stress and coping and t-tests used to explore possible links to demographics. Qualitative data were analysed thematically using Braun and Clarke's method. Results: For 52 survey participants, the mean score for the PSS was M = 39.75 and CSE-M = 150.6 indicating high stress and medium coping skills. From the t-test, only absence of health issues was associated with higher levels of coping. Thirteen HCWs participated in one-to-one interviews. Qualitative data analysis generated four themes contributing to stress: 1. personal factors, 2. changed care environment, 3. amplified scrutiny and 4. psychological responses. Coping was represented as three main themes: 1. personal factors, 2. organizational culture and 3. safety and security. There is a critical need for a strategic approach to provide psychological support to care home staff both during and beyond the context of the pandemic.
MeSH term(s)	Humans ; COVID-19 ; Pandemics ; Cross-Sectional Studies ; Adaptation, Psychological ; Health Personnel
Language	English
Publishing date	2022-08-20
Publishing country	United States
Document type	Journal Article
ZDB-ID	2809556-X
ISSN	2054-1058 ; 2054-1058
ISSN (online)	2054-1058
ISSN	2054-1058
DOI	10.1002/nop2.1335
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Uptake and effects of psychological first aid training for healthcare workers' wellbeing in nursing homes: A UK national survey.

Schoultz, Mariyana / McGrogan, Claire / Beattie, Michelle / Macaden, Leah / Carolan, Clare / Dickens, Geoffrey L

PloS one

2022 Volume 17, Issue 11, Page(s) e0277062

Abstract: Aims: Psychological First Aid is a brief intervention based on international guidance from the World Health Organisation. Free to access online training in the intervention was introduced during the COVID-19 pandemic in UK. We aimed to determine the ... ...

Abstract	Aims: Psychological First Aid is a brief intervention based on international guidance from the World Health Organisation. Free to access online training in the intervention was introduced during the COVID-19 pandemic in UK. We aimed to determine the uptake of Psychological First Aid training among healthcare workers in care homes in the UK and to assess its effects on their wellbeing. Design: This was a sequential mixed methods design. Methods: Healthcare workers (nurses and carers) working in care homes in the UK were surveyed about their uptake of Psychological First Aid, their stress, coping efficacy and the key concepts of Psychological First Aid (safety, calmness, hopefulness, connectedness, and accomplishment). Those that completed the Psychological First Aid training were asked to share their experiences via qualitative survey. Data collection was conducted between June and October 2021. Analyses included descriptive statistics and regression analysis. A six step thematic analysis was used to interpret the qualitative data. Results: 388 participants responded to the survey. The uptake of Psychological First Aid training was 37 (9.5%). Psychological first aid was a significant predictor for coping efficacy (β = 17.54, p = .001). Participants with a physical or mental health condition experienced higher stress and lower coping regardless of PFA training. Four themes were identified from the qualitative analysis: self-awareness and growth, relationships with others, overcoming stress and accessibility. Conclusion: While this study suggests some benefits to healthcare workers in care home settings undergoing PFA the poor uptake of the training warrants further investigation. Impact: Care home staff need psychological support. This gap remains as few completed PFA training. This is the first study in UK and worldwide to look at the effects of psychological first aid on stress and coping in this population and it warrants further investigation.
MeSH term(s)	Humans ; Pandemics ; COVID-19/epidemiology ; Psychological First Aid ; Health Personnel/psychology ; Nursing Homes ; United Kingdom
Language	English
Publishing date	2022-11-03
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0277062
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care: GP Think Aloud and Patient and Carer Interviews.

Hubbard, Gill / Broadfoot, Kirsten / Carolan, Clare / van Woerden, Hugo C

Journal of primary care & community health

2021 Volume 12, Page(s) 21501327211024402

Abstract: Objectives: This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging ... ...

Abstract	Objectives: This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging technology from patients' and carers' perspectives. Methods: A computer screening program electronically searches primary care records in routine clinical practice to identify patients with advanced illness who are not already on a PCR. Five GPs were asked to "think aloud" about adding patients identified by computer screening to the PCR. Key informant interviews with 6 patients on the PCR and 4 carers about their experiences of palliative care while on the PCR and their views of this technology. Data were analyzed thematically. Results and conclusions: Using computer screening, 29% additional patients were added by GPs to the PCR. GP decision-making for the PCR was informed by clinical factors such as: if being treated with curative intent; having stable or unstable disease; end-stage disease, frailty; the likelihood of dying within the next 12 months; and psychosocial factors such as, age, personality, patient preference and social support. Six (60%) patients/carers did not know that they/their relative was on the PCR. From a patient/carer perspective, having a non-curative illness was not in and of itself sufficient reason for being on the PCR; other factors such as, unstable disease and avoiding pain and suffering were equally if not more, important. Patients and carers considered that computer screening should support but not replace, GP decision-making about the PCR. Computer screening merits ongoing development as a tool to aid clinical decision-making around entry to a PCR, but should not be used as a sole criterion. Care need, irrespective of diagnosis, disease trajectory or prognosis, should determine care.
MeSH term(s)	Caregivers ; Computers ; General Practitioners ; Humans ; Palliative Care ; Primary Health Care ; Qualitative Research
Language	English
Publishing date	2021-06-12
Publishing country	United States
Document type	Journal Article
ZDB-ID	2550221-9
ISSN	2150-1327 ; 2150-1319
ISSN (online)	2150-1327
ISSN	2150-1319
DOI	10.1177/21501327211024402
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Response to compassionate community networks: supporting home dying.

Carolan, Clare M

BMJ supportive & palliative care

2012 Volume 2, Issue 2, Page(s) 85

MeSH term(s)	Caregivers ; Community Networks ; Home Care Services ; Humans ; Social Support ; Terminal Care
Language	English
Publishing date	2012-06
Publishing country	England
Document type	Comment ; Letter
ISSN	2045-4368
ISSN (online)	2045-4368
DOI	10.1136/bmjspcare-2012-000229
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Last Aid Training Online

Leah Macaden / Kirsten Broadfoot / Clare Carolan / Kevin Muirhead / Siobhan Neylon / Jeremy Keen

Healthcare, Vol 10, Iss 918, p

Participants’ and Facilitators’ Perceptions from a Mixed-Methods Study in Rural Scotland

2022 Volume 918

Abstract	(1) Background: Palliative and end-of-life care services are increasingly gaining centre stage in health and social care contexts in the UK and globally. Death and dying need are relational processes. Building personal and community capacity along with resilience is vital to support families and communities to normalise death and dying. Last Aid Training (LAT) is one such innovative educational initiative which teaches the general public about the fundamentals of palliative care and promotes public discussion about death and dying. The Highland Hospice [HH] in Scotland has pioneered delivery of LAT in face-to-face settings since March 2019 and online since March 2020 to accommodate pandemic restrictions. (2) Methods: This study used a mixed-methods approach, combining an online survey with LAT participants followed by individual semi-structured qualitative interviews with both LAT participants and facilitators. The primary aim of this study was to investigate the impacts of LAT for participants at the individual, family, and community levels, as well as explore participant and facilitator experiences and perspectives of LAT in an online environment. (3) Results: Overall, this evaluation demonstrates that provision of foundational death literacy education in social contexts enhances the personal knowledge, skills, and confidence of individual community members and supports the notion that this personal growth could lead to strengthened community action. (4) Conclusions: Findings from this study concluded that there is potential to include LAT as the foundational core training to promote death literacy in communities with further exploration to integrate/align LAT with other national/global end-of-life care frameworks.
Keywords	public health ; Last Aid ; online ; death literacy ; perceptions ; participants ; Medicine ; R
Subject code	360
Language	English
Publishing date	2022-05-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care

Gill Hubbard / Kirsten Broadfoot / Clare Carolan / Hugo C. van Woerden

Journal of Primary Care & Community Health, Vol

GP Think Aloud and Patient and Carer Interviews

2021 Volume 12

Abstract	Objectives: This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging technology from patients’ and carers’ perspectives. Methods: A computer screening program electronically searches primary care records in routine clinical practice to identify patients with advanced illness who are not already on a PCR. Five GPs were asked to “think aloud” about adding patients identified by computer screening to the PCR. Key informant interviews with 6 patients on the PCR and 4 carers about their experiences of palliative care while on the PCR and their views of this technology. Data were analyzed thematically. Results and Conclusions: Using computer screening, 29% additional patients were added by GPs to the PCR. GP decision-making for the PCR was informed by clinical factors such as: if being treated with curative intent; having stable or unstable disease; end-stage disease, frailty; the likelihood of dying within the next 12 months; and psychosocial factors such as, age, personality, patient preference and social support. Six (60%) patients/carers did not know that they/their relative was on the PCR. From a patient/carer perspective, having a non-curative illness was not in and of itself sufficient reason for being on the PCR; other factors such as, unstable disease and avoiding pain and suffering were equally if not more, important. Patients and carers considered that computer screening should support but not replace, GP decision-making about the PCR. Computer screening merits ongoing development as a tool to aid clinical decision-making around entry to a PCR, but should not be used as a sole criterion. Care need, irrespective of diagnosis, disease trajectory or prognosis, should determine care.
Keywords	Computer applications to medicine. Medical informatics ; R858-859.7 ; Public aspects of medicine ; RA1-1270
Subject code	610
Language	English
Publishing date	2021-06-01T00:00:00Z
Publisher	SAGE Publishing
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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