Meaning making And Generativity In Children and Young people with Life limiting conditions (MAGICYL)

Watts, Lucy; Rodriguez, Alison; Tatterton, Michael J; McSherry, Wilfred; Smith, Joanna

doi:10.1136/ebnurs-2019-103075

Cited by 3 publications

(2 citation statements)

References 7 publications

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“…2) We hosted a Twitter chat, for one hour, that involved tweeting a series of questions and responding to tweets to generate an online debate and capture broader views about DT and its relevance to CYP with LLTC. We summarised the chat in an online story that enabled us to include postings in subsequent data analysis [23]. Twenty-two individuals who engaged in the chat identified themselves; 8 children's nurses, 2 adult nurses, 6 Psychologists, 3 young people with LLTC and 2 parents of CYP with LLTC.…”

Section: Methodsmentioning

confidence: 99%

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

Watts¹,

Smith²,

McSherry³

et al. 2020

OBM ICM

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In palliative and end of life care settings supporting people to make sense of their lives is as important as managing disease symptoms. Dignity Therapy is a validated psychotherapeutic intervention designed to bring about a sense of meaning and purpose for individuals at the end of life. Dignity Therapy has primarily been implemented and evaluated in adult palliative care settings. Prior to designing studies that evaluate Dignity Therapy for children and young people with life-limiting and life-threatening conditions, it is essential to establish stakeholders' perceptions of Dignity Therapy, and whether adaptations would be required for this client group. We aimed to explore the acceptability of Dignity Therapy for children and young people with life-limiting and life-threatening conditions and health professionals, and report findings from our stakeholder activities. Stakeholder consultation activities involved one Death Café and two workshops, with over 80 health professionals, hosted at two hospice settings, and a range of social media activities including feedback from five young people with life-limiting and life-threatening conditions via a closed Facebook group and a twitter chat with 22 contributors. Data included field notes, workshop outputs ('post-it ideas storm' and 'diamond ranking') and social media postings that were analysed using thematic analysis. Across stakeholders, there was overwhelming support for explicit interventions that support the psychosocial and spiritual needs of children and young people with life-limiting conditions. Dignity Therapy could be a supportive intervention to promote open conversations about life, meaning and purpose and dying, between the child or young person, family members and health professionals, but needs adapting to meet their needs. A tool kit of interventions, appropriate to a range of ages and cognitive abilities was suggested, for example a storybook for young children and a digitalised version of dignity therapy for older children/young people. Collaboration with stakeholders is the first stage in developing, or adapting an existing intervention in a different context, a complex intervention. Our stakeholder consultation highlighted that Dignity Therapy has potential to improve the psychosocial and spiritual wellbeing of children and young people with life-limiting and lifethreatening conditions, through recalling memories and thinking about the things that are important to them and what they want to be remember for. Research is now needed to develop and test a Dignity Therapy intervention for children and young people with lifeliming and life-threatening conditions in the UK.

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Section: Methodsmentioning

confidence: 99%

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

Watts¹,

Smith²,

McSherry³

et al. 2020

OBM ICM

Self Cite

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“…To date, DT is proving to be a supportive psychotherapeutic intervention for middle-aged and older adults 14. However, further studies are required to develop DT as a complex intervention to support the needs of younger life-limited populations 15 16…”

Section: What Are the Key Stages In Developing A Complex Intervention?mentioning

confidence: 99%

Research made simple: developing complex interventions

2020

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Table 1 Framework for developing a complex intervention 8 applied to EoLC interventions and MORECare guidelines 11 Activities Considerations Planning Identify the problem, and why a change is required, its importance and what would be the benefits of a new intervention. Identify current interventions-what does and does not work. Identify resources required both in terms of time (be realistic) and funding Understand the context (population and individuals; location or geographical setting; social, economic, cultural and political influences) where the intervention will be implemented. Understand the facilitators and barriers to reaching the relevant population Involve stakeholdersIdentify and involve all stakeholders (commissioners of services, health professionals who deliver interventions, and patients and carers who will benefit from the intervention) throughout the development process ► It may be appropriate to adjust eligibility criteria for participants in EoLC in order to recruit patients who may benefit the most from the intervention The team It is essential the development team includes individuals with relevant expertise in relation to the problem being addressed, including stakeholders, and the methodological experts to support the collection of evidence ► Researchers need to be familiar with the challenges in EoLC studies. Ideally involvement with stakeholders would be established prior to the study and continue beyond individual studies. It is also important to minimise the burden for clinical staff who participate Establish the evidence-base Review and synthesis published research evidence before starting to develop the intervention to understand the evidence base for each component of the intervention Draw on theory Identify existing theory/ theories or frameworks that will inform the development of the intervention, eg, psychological and organisational theories Develop and design the intervention Collect qualitative data to generate ideas about the content, format and delivery of the intervention. Identify outcomes and what measures exist to evaluate outcomes using quantitative methods EoLC measures should be chosen that meet the following criteria: ► Established validity and reliability in a relevant population ► Responsive to change over time ► Capture clinically important data ► Easy to administer and interpret (concise and not complex) ► Applicable across care settings to capture a change in outcomes by location (eg, home, hospice and hospital) ► Able to be integrated into clinical care ► Minimise problems of response shift (a change in conceptualisation or calibration of what is being measured) ► In addition, and central to complex interventions is the experience of 'care'-allowing enough time for the intervention to have had an effect is important. The plan of investigation and methods should not cause unnecessary burden on participants. The therapeutic effect of interviewing, if a component of the intervention should also be considered during evaluation Testing the intervention Write up the ...

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Using creative methods of engagement to facilitate the inclusion of children and young people with diverse needs in research

Rodriguez,

Tatterton,

Smith

2024

Evid Based Nurs

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Meaning making And Generativity In Children and Young people with Life limiting conditions (MAGICYL)

Abstract: EBN engages readers through a range of Online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

Cited by 3 publications

References 7 publications

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

Research made simple: developing complex interventions

Using creative methods of engagement to facilitate the inclusion of children and young people with diverse needs in research

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