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Article ; Online: Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

Aworinde, Jesutofunmi / Evans, Catherine J / Gillam, Juliet / Ramsenthaler, Christina / Davies, Nathan / Ellis-Smith, Clare

Health expectations : an international journal of public participation in health care and health policy

2024 Volume 27, Issue 1, Page(s) e13987

Abstract: Introduction: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to ... ...

Abstract	Introduction: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. Methods: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. Results: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.
MeSH term(s)	Humans ; Decision Support Systems, Clinical ; Dementia/therapy ; Dementia/diagnosis ; Decision Making, Shared ; Caregivers ; Qualitative Research
Language	English
Publishing date	2024-02-12
Publishing country	England
Document type	Journal Article
ZDB-ID	2119434-8
ISSN	1369-7625 ; 1369-6513
ISSN (online)	1369-7625
ISSN	1369-6513
DOI	10.1111/hex.13987
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Article ; Online: Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.

Kishino, Megumi / Ellis-Smith, Clare / Afolabi, Oladayo / Koffman, Jonathan

Palliative medicine

2022 Volume 36, Issue 3, Page(s) 462–477

Abstract: Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers.: Aim: To examine ...

Abstract	Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with 'QualSyst'. Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members' concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders' perceptions to identify additional components and linkages between them within family-integrated advance care planning.
MeSH term(s)	Advance Care Planning ; Family ; Health Personnel ; Humans ; Neoplasms/therapy ; Qualitative Research
Language	English
Publishing date	2022-01-06
Publishing country	England
Document type	Journal Article ; Systematic Review ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163211068282
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Article ; Online: What are the barriers and facilitators to advance care planning with older people in long-term care facilities? A qualitative study.

Zhou, Yuxin / Wang, Ariel / Braybrook, Debbie / Ellis-Smith, Clare / Feng, Haixia / Gong, Ni / Zhou, Zhi / Harding, Richard

Journal of clinical nursing

2024

Abstract: Aim: To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities.: Design: A qualitative descriptive design.: Methods: We conducted ... ...

Abstract	Aim: To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities. Design: A qualitative descriptive design. Methods: We conducted semi-structured interviews with 12 residents of long-term care facilities, 10 family members and 14 healthcare professionals. Data were analysed using reflexive thematic analysis. The social ecological model was used to develop implementation recommendations. Results: We constructed a conceptual model of barriers and facilitators to advance care planning in long-term care facilities, drawing upon four dominant themes from the qualitative analysis: (1) The absence of discourse on end-of-life care: a lack of cultural climate to talk about death, the unspoken agreement to avoid conversations about death, and poor awareness of palliative care may hinder advance care planning initiation; (2) Relational decision-making process is a dual factor affecting advance care planning engagement; (3) Low trust and 'unsafe' cultures: a lack of honest information sharing, risks of violating social expectations and damaging social relationships, and risks of legal consequences may hinder willingness to engage in advance care planning; (4) Meeting and respecting residents' psychosocial needs: these can be addressed by readiness assessment, initiating advance care planning in an informal and equal manner and involving social workers. Conclusion: Our findings show that residents' voices were not being heard. It is necessary to identify residents' spontaneous conversation triggers, articulate the value of advance care planning in light of the family's values and preferences, and respect residents' psychosocial needs to promote advance care planning in long-term care facilities. Advance care planning may alleviate the decision-making burden of offspring in nuclear families. Implications for clinical practice: The evidence-based recommendations in this study will inform the implementation of context-specific advance care planning in Asia-Pacific regions. Patient and public contribution: Patients and caregivers contributed to the interview pilot and data collection.
Language	English
Publishing date	2024-02-20
Publishing country	England
Document type	Journal Article
ZDB-ID	1159483-4
ISSN	1365-2702 ; 0962-1067 ; 1752-9816
ISSN (online)	1365-2702
ISSN	0962-1067 ; 1752-9816
DOI	10.1111/jocn.17071
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Zs.A 3764: Show issues

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Article ; Online: Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review.

Scott, Hannah May / Braybrook, Debbie / Harðardóttir, Daney / Ellis-Smith, Clare / Harding, Richard

Health and quality of life outcomes

2023 Volume 21, Issue 1, Page(s) 63

Abstract: Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and ... ...

Abstract	Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice. Methods: The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25 Results: We retained 69 studies, conducted across primary (n = 14), secondary (n = 13), tertiary (n = 37), and community (n = 8) healthcare settings, including both child self-report (n = 46) and parent-proxy (n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice. Conclusions: These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes. Trial registration: Prospero CRD 42022330013.
MeSH term(s)	Adult ; Humans ; Child ; Quality of Life ; Delivery of Health Care
Language	English
Publishing date	2023-07-03
Publishing country	England
Document type	Systematic Review ; Journal Article ; Review
ZDB-ID	2098765-1
ISSN	1477-7525 ; 1477-7525
ISSN (online)	1477-7525
ISSN	1477-7525
DOI	10.1186/s12955-023-02143-9
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Article: Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.

Gillam, Juliet / Evans, Catherine / Aworinde, Jesutofunmi / Ellis-Smith, Clare / Ross, Jamie / Davies, Nathan

Digital health

2023 Volume 9, Page(s) 20552076231211118

Abstract: Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to ... ...

Abstract	Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to co-design strategies to implement an eHealth intervention, the EMBED-Care Framework, to support assessment and decision-making for people with dementia in care homes. Methods: A qualitative co-design method was applied through a series of workshops. Participants included family carers and health and social care practitioners. People with dementia were included through a series of stakeholder engagement meetings. The workshops focused on co-developing strategies in response to identified determinants of implementation. A codebook thematic analytic approach was taken, guided by the Normalisation Process Theory (NPT). Results: Three workshops were conducted from July 2021 to November 2021, attended by 39 participants. Three overarching phases of implementation were identified which aligned with the constructs of the NPT: (a) incentivising adoption of the Framework, which requires promotion of its benefits and alignment with recommendations for good quality dementia care to engage stakeholders, relating to 'coherence' and 'cognitive participation' constructs; (b) enabling its operation, which requires ensuring compatibility with care home processes, provision of training and support from 'champions', relating to 'collective action'; (c) sustaining use of the Framework, which requires monitoring of implementation and appraisal of its effects, relating to 'reflexive monitoring'. Conclusions: We have developed a multi-strategy, theoretically driven plan to implement eHealth to support assessment and decision-making for people with dementia in care homes. Successful implementation requires incentivisation to adopt, ability to operate and motivation to sustain use of eHealth. The plan is strengthened through collaborating with end-users to increase its value, credibility and real-world relevance. The theoretically informed strategies target mechanisms of the NPT, demonstrated to shape the implementation process and outcomes, ready for testing.
Language	English
Publishing date	2023-11-28
Publishing country	United States
Document type	Journal Article
ZDB-ID	2819396-9
ISSN	2055-2076
ISSN	2055-2076
DOI	10.1177/20552076231211118
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Article ; Online: Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

Kishino, Megumi / Koffman, Jonathan / Nagatomi, Hiroaki / Yuasa, Misuzu / Ellis-Smith, Clare

Palliative medicine

2023 Volume 37, Issue 9, Page(s) 1434–1446

Abstract: Background: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear.: Aim: To explore how family involvement impacts the process ...

Abstract	Background: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. Aim: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. Design: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. Setting/participants: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. Results: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. Conclusions: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.
MeSH term(s)	Humans ; Advance Care Planning ; Family/psychology ; Health Personnel/psychology ; Qualitative Research ; Neoplasms/therapy ; Delivery of Health Care
Language	English
Publishing date	2023-09-18
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163231194202
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Article ; Online: Mechanisms and contextual influences on the implementation of advance care planning for older people in long-term care facilities: A realist review.

Zhou, Yuxin / Wang, Ariel / Ellis-Smith, Clare / Braybrook, Debbie / Harding, Richard

International journal of nursing studies

2022 Volume 133, Page(s) 104277

Abstract: Background: Older people in long-term care facilities face clinical uncertainty and unpredictable decline. Advance care planning enables older people to identify preferences and wishes for future treatment and care before any loss of capacity. However, ... ...

Abstract	Background: Older people in long-term care facilities face clinical uncertainty and unpredictable decline. Advance care planning enables older people to identify preferences and wishes for future treatment and care before any loss of capacity. However, it is unclear how, why and under what circumstances the implementation of advance care planning for older people can be normalised into routine practice within long-term care facilities. Objective: To identify and explain mechanisms and contextual factors that underpin the implementation of advance care planning for older people in long-term care facilities. Design: Realist review. Setting(s): Long-term care facilities. Methods: Consistent with realist review methodology, we developed the initial programme theory by scoping reviews, engaging UK and China stakeholders and utilising the Normalisation Process Theory. MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, and Scopus were subsequently searched from 01/01/1990 to 11/06/2021. Inductive and deductive coding was used to generate context-mechanism-outcome configurations, which were iteratively tested to refine the programme theory. Results: 5459 records were identified, and 48 were retained for final synthesis. Seven context-mechanism-outcome configurations were identified: (1) carry out sensitive conversation gradually in a nonthreatening way; (2) identify 'a window of opportunity'; (3) deliver sustainable and available training; (4) build a collaborative and multidisciplinary network; (5) conduct collaborative negotiation to achieve shared decision-making; (6) secure active leadership buy-in; (7) keep conversation and documentation on track. A logic model was developed to conceptualise the causal pathways between the contexts, mechanisms, and outcomes. Conclusions: Normalising conversations about death is paramount to mainstreaming advance care planning implementation in long-term care facilities. The key to achieving this is older people, family members and staff have a shared understanding of the aims, values, and potential benefits of advance care planning. Advance care planning should be introduced at a time that is important to older people and families, rather than being process-driven. Nurse facilitators play a vital role in ensuring older people's voices are heard and in building bridges between participants in advance care planning. The findings of this study inform the appropriate development and evaluation of advance care planning interventions for older people in long-term care facilities. Further research is needed to explore mechanisms that underpin the implementation of advance care planning in Asian countries. Registration: This review is registered with the International Prospective Register of Systematic Reviews (CRD42021214317).
MeSH term(s)	Advance Care Planning ; Aged ; Clinical Decision-Making ; Humans ; Long-Term Care ; Systematic Reviews as Topic ; Uncertainty
Language	English
Publishing date	2022-04-30
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	80148-3
ISSN	1873-491X ; 0020-7489
ISSN (online)	1873-491X
ISSN	0020-7489
DOI	10.1016/j.ijnurstu.2022.104277
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Article ; Online: 'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

Bristowe, Katherine / Braybrook, Debbie / Scott, Hannah M / Coombes, Lucy / Harðardóttir, Daney / Roach, Anna / Ellis-Smith, Clare / Bluebond-Langner, Myra / Fraser, Lorna / Downing, Julia / Murtagh, Fliss / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 3, Page(s) 379–388

Abstract: Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to ...

Abstract	Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
MeSH term(s)	Humans ; Child ; Adolescent ; Qualitative Research ; Palliative Care/psychology ; Hospice Care ; Language ; Communication
Language	English
Publishing date	2024-03-04
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241233977
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Article ; Online: What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Roach, Anna / Bristowe, Katherine / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss Em / Ellis-Smith, Clare / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 4, Page(s) 471–484

Abstract: Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is ... ...

Abstract	Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
Language	English
Publishing date	2024-03-13
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241234797
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Article ; Online: Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Scott, Hannah May / Bristowe, Katherine / Ellis-Smith, Clare / Fraser, Lorna K / Downing, Julia / Bluebond-Langner, Myra / Murtagh, Fliss Em / Harding, Richard

Palliative medicine

2024 , Page(s) 2692163241248735

Abstract: Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. ...

Abstract	Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
Language	English
Publishing date	2024-05-06
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241248735
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