‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

Hiscock, A.; Barclay, Stephen

doi:10.1136/bmjspcare-2017-001369

Cited by 6 publications

(4 citation statements)

References 12 publications

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“…The motivation to engage was often triggered by a physical deterioration in the child's health, similar to previous research (Fahner et al, 2020 ; Hiscock & Barclay, 2019 ; Kelly et al, 2018 ; Stark et al, 2008 ).…”

Section: Discussionsupporting

confidence: 82%

Initiation of paediatric advance care planning: Cross‐sectional survey of health professionals reported behaviour

Carr

Hasson

McIlfatrick

et al. 2022

Child

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Background Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. Method Underpinned by the Capability, Opportunity, Motivation–Behaviour (COM‐B) model for behaviour change, a cross‐sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open‐ended questions were mapped and correlations between COM‐B and demographic profiles identified. Results Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. Conclusion Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM‐B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

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Section: Discussionsupporting

confidence: 82%

Initiation of paediatric advance care planning: Cross‐sectional survey of health professionals reported behaviour

Carr

Hasson

McIlfatrick

et al. 2022

Child

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“…Although clinicians may find this challenging, it remains important and it is essential that conversations are approached sensitively, and that discussions are communicated with the wider team to avoid unnecessary repetition. 80 …”

Section: Discussion Of Palliative Care Themesmentioning

confidence: 99%

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders

2023

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Background/objectives The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. Methods We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. Results We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. Conclusions The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.

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“…43 Additional evidence is needed to better understand the influence of advance care planning guidelines and frameworks on quality of end-of-life care from the perspective of the adolescent and young adult themselves. Existing international literature shows that healthcare professionals often experience barriers to having advance care planning discussions with adolescents and young adults 42,[44][45][46] including a perceived lack of accessible training opportunities, 42 a need to upskill communication skills, prognostic uncertainty, competing demands, 46 trying to balance the young person's autonomy with their capacity to make informed medical decisions, 45 and challenges relating to their own emotions. 44 Additional information regarding healthcare professionals' confidence in implementing these guidelines and frameworks in practice is therefore needed to identify the educational and training needs of healthcare professionals across specialties and strategies to address these identified barriers to advance care planning discussions with adolescents and young adults.…”

Section: Areas For Further Researchmentioning

confidence: 99%

A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions

Linane,

Tanjavur,

Sullivan

2024

Palliat Med

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Background: Advance care planning discussions are crucial in the management and support of individuals with life-limiting or life-threatening conditions. Few studies have examined best practices for advance care planning with adolescents and young adults. Aim: To identify core components of current guidelines, frameworks and tools for advance care planning discussions with adolescents and young adults with life-limiting or life-threatening conditions and their families. Design: A scoping review of the literature was conducted followed by a thematic analysis of the included papers. The scoping review was reported according to the Joanna Briggs Institute approach to the conduct of scoping reviews. Data sources: Five databases [Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, PsycInfo, PubMed and Scopus] were searched for English-language papers published between inception until January 2023. Results: The search yielded 2976 papers, of which 9 met the inclusion criteria. Five main themes were identified: (i) utilisation of standardised documents and protocols; (ii) shared decision-making between the adolescents and young adults, their families and the healthcare team; (iii) the importance of open and honest communication with adolescents and young adults during advance care planning discussions; (iv) individualisation and flexibility in the advance care planning process and (v) timing of advance care planning initiation. Conclusions: Results highlight the importance of engaging adolescents and young adults in advance care planning and considering their unique needs when initiating and framing these discussions. Our findings can be used by healthcare professionals to inform advance care planning in this group.

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‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

Abstract: Community-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.

Cited by 6 publications

References 12 publications

Initiation of paediatric advance care planning: Cross‐sectional survey of health professionals reported behaviour

Initiation of paediatric advance care planning: Cross‐sectional survey of health professionals reported behaviour

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders

A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions

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