Evidence map›Paper›PMID 40868609›Full record

ArticleHealthcare (Basel, Switzerland)2025

'Finally, in Hands I Can Trust': Perspectives on Trust in Motor Neurone Disease Care.

Dominika Lisiecka, Neil Dyson, Keith Malpress, Anthea Smith, Ellen McNeice, Peter Shack, Karen Hutchinson

Abstract read
In one paragraph

Article in Healthcare (Basel, Switzerland), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Review
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Dominika LisieckaDepartment of Nursing and Healthcare Sciences, Munster Technological University-Kerry Campus, V92 CX88 Tralee, Ireland.ORCID 0000-0002-0763-3076
Neil DysonMND Australia, Lived Experience Network, Canberra, ACT 2606, Australia.
Keith MalpressMND Australia, Lived Experience Network, Canberra, ACT 2606, Australia.
Anthea SmithMND Australia, Lived Experience Network, Canberra, ACT 2606, Australia.
Ellen McNeiceMND Australia, Lived Experience Network, Canberra, ACT 2606, Australia.
Peter ShackMND Australia, Lived Experience Network, Canberra, ACT 2606, Australia.
Karen HutchinsonSchool of Population Health, University of New South Wales, Sydney, NSW 2052, Australia.ORCID 0000-0002-1353-3100

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Integrated multidisciplinary care is recognised as essential for people living with motor neurone disease (PlwMND) and their families. The values underpinning integrated care, such as person-centredness, respect, empowerment, and co-production, are central to delivering meaningful and comprehensive support. Trust is an essential yet often overlooked element of effective person- and family-centred integrated care, particularly for PlwMND. While specialist multidisciplinary MND clinics represent the benchmark for evidence-based care, many PlwMND and their families depend significantly on local and community-based support services to maintain quality of life. Trust directly influences their engagement with these services and the continuity of care provided. Trust enables understanding of personal priorities and how they change as the disease progresses, ultimately allowing for person-centred care to happen. Trust is necessary to enable service co-production, which is a strong value of integrated care. Research highlights seven key domains of support essential to PlwMND and their carers: practical, social, informational, psychological, physical, emotional, and spiritual. Effective integrated care requires strong relationships built upon trust, shared decision-making, respect for individuality, and clear communication. Furthermore, due to the rapidly progressive nature of MND, care priorities and perceived symptom burdens may shift significantly over short periods, making flexible, temporally sensitive approaches critical. A dynamic, inclusive model of decision-making that fosters autonomy within and regular co-review of needs is recommended. This perspective paper examines how person- and family-centred integrated care is currently being delivered, what is working well, and how these practices can be further strengthened to enhance the care experiences of PlwMND, their families, and the health and social care providers involved. This paper builds on both theoretical knowledge and clinical experience to offer our perspective on the critical role of trust in co-producing integrated care for PlwMND. It brings together the voices of clinicians and researchers, alongside those with lived experience of MND. We propose a diagram of care that embeds the core values of integrated, person-centred care within the specific context of MND. Our aim is to enhance collaborative practices, strengthen cross-sector partnerships, and ultimately improve the care experiences for professionals, PlwMND, and their families.

Indexed as

amyotrophic lateral sclerosisintegrated caremotor neurone diseaseperson-centred caretrust

Identifiers

PMID40868609
PMCPMC12386091

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.