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

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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 n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services.

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.

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Most cited references 83

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Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

A Tong, P SAINSBURY, J. Craig (2007)

Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.

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Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science

Laura Damschroder, David Aron, Rosalind E Keith … (2009)

Background Many interventions found to be effective in health services research studies fail to translate into meaningful patient care outcomes across multiple contexts. Health services researchers recognize the need to evaluate not only summative outcomes but also formative outcomes to assess the extent to which implementation is effective in a specific setting, prolongs sustainability, and promotes dissemination into other settings. Many implementation theories have been published to help promote effective implementation. However, they overlap considerably in the constructs included in individual theories, and a comparison of theories reveals that each is missing important constructs included in other theories. In addition, terminology and definitions are not consistent across theories. We describe the Consolidated Framework For Implementation Research (CFIR) that offers an overarching typology to promote implementation theory development and verification about what works where and why across multiple contexts. Methods We used a snowball sampling approach to identify published theories that were evaluated to identify constructs based on strength of conceptual or empirical support for influence on implementation, consistency in definitions, alignment with our own findings, and potential for measurement. We combined constructs across published theories that had different labels but were redundant or overlapping in definition, and we parsed apart constructs that conflated underlying concepts. Results The CFIR is composed of five major domains: intervention characteristics, outer setting, inner setting, characteristics of the individuals involved, and the process of implementation. Eight constructs were identified related to the intervention (e.g., evidence strength and quality), four constructs were identified related to outer setting (e.g., patient needs and resources), 12 constructs were identified related to inner setting (e.g., culture, leadership engagement), five constructs were identified related to individual characteristics, and eight constructs were identified related to process (e.g., plan, evaluate, and reflect). We present explicit definitions for each construct. Conclusion The CFIR provides a pragmatic structure for approaching complex, interacting, multi-level, and transient states of constructs in the real world by embracing, consolidating, and unifying key constructs from published implementation theories. It can be used to guide formative evaluations and build the implementation knowledge base across multiple studies and settings.

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Using the framework method for the analysis of qualitative data in multi-disciplinary health research

Nicola K Gale, Gemma Heath, Elaine Cameron … (2013)

Background The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations. Discussion The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study. Summary Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research.

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Author and article information

Journal

Journal ID (nlm-ta): Palliat Med

Journal ID (iso-abbrev): Palliat Med

Journal ID (publisher-id): PMJ

Journal ID (hwp): sppmj

Title: Palliative Medicine

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Print): 0269-2163

ISSN (Electronic): 1477-030X

Publication date (Electronic): 13 March 2024

Publication date (Print): April 2024

Volume: 38

Issue: 4

Pages: 471-484

Affiliations

[1 ]King’s College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK

[2 ]Royal Marsden NHS Foundation Trust, London, UK

[3 ]University College London, London, UK

[4 ]University College London, Louis Dundas Centre for Children’s Palliative Care, London, UK

[5 ]Rutgers University, Camden, NJ, USA

[6 ]International Children’s Palliative Care Network, Kampala, Uganda

[7 ]Brighton and Sussex Medical School, University of Sussex, Brighton, UK

[8 ]Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK

Author notes

[*]Hannah May Scott, King’s College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, Bessemer Road, London SE5 9RS, UK. Email: hannah.m.scott@ 123456kcl.ac.uk

Author information

Hannah May Scott https://orcid.org/0000-0003-1243-3500

Debbie Braybrook https://orcid.org/0000-0001-9253-4955

Anna Roach https://orcid.org/0000-0002-0635-0429

Katherine Bristowe https://orcid.org/0000-0003-1809-217X

Myra Bluebond-Langner https://orcid.org/0000-0001-9281-5431

Lorna K Fraser https://orcid.org/0000-0002-1360-4191

Fliss EM Murtagh https://orcid.org/0000-0003-1289-3726

Clare Ellis-Smith https://orcid.org/0000-0003-3453-3203

Richard Harding https://orcid.org/0000-0001-9653-8689

Article

Publisher ID: 10.1177_02692163241234797

DOI: 10.1177/02692163241234797

PMC ID: 11025304

PubMed ID: 38481003

SO-VID: 4d8e71b3-3839-4455-89be-9a77ace1416d

License:

This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

History

Funding

Funded by: national institute for health research applied research collaboration south london, FundRef https://doi.org/10.13039/501100023232;

Award ID: NIHR-INF-2158

Funded by: european research council, FundRef https://doi.org/10.13039/501100000781;

Award ID: 772635

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ScienceOpen disciplines: Anesthesiology & Pain management

Keywords: paediatrics,palliative care,children,implementation science,patient reported outcome measures,patient-centred outcomes research

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ScienceOpen disciplines: Anesthesiology & Pain management

Keywords: paediatrics, palliative care, children, implementation science, patient reported outcome measures, patient-centred outcomes research

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

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Abstract

Background:

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Results:

Conclusions:

Related collections

Irish Journal of Paramedicine

Most cited references 83

Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science

Using the framework method for the analysis of qualitative data in multi-disciplinary health research

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