Table 1

The most highly rated statements to improve service and opportunities for YAs with neuromuscular life-limiting conditions organised by conceptual grouping and clusters within the groupings

ClusterStatementAverage importance rating
Improve programming (overall importance rating=2.60)
Community education and development2.72
Be mindful of needs of other residents living in institutional facilities when providing a palliative approach to care. (32)*3.57
Promote greater public awareness of living with a life-limiting conditions. (41)3.09
Opportunities and resources2.49
Create an adult make a wish programme. (2)*3.61
Create more opportunities for young adults to connect socially in the community (38)2.70
Develop a template for hiring private care aides. (61)2.65
Offer web-based opportunities for young adults to connect on-line, share resources, tips and experience. (53)2.64
Provide better information for finding adaptive technologies. (66)2.52
Create a continuum of care (overall importance rating=2.21)
Create a continuum of care2.21
Remove the word 'palliative' replace with 'life-limiting' to make it more accessible. (42)*3.22
Ensure contracted home care nursing agencies to send in ONLY qualified palliative care nurses. (59)*2.74
Create young adult palliative care transition management plans and templates. (64)*2.57
Establish a Young Adult Palliative Care System to ensure access to appropriate palliative care that is distinct from paediatric or adult programmes. (17)2.57
Develop a holistic framework for assessing their needs and wants. (16)2.41
Provide opportunities for discussion about future healthcare plans and needs among caregivers, young adults and family members. (18)2.30
Engage family physicians. (55)*2.30
Offer access to a palliative care consult team at any point. (60)2.26
Develop collaborations among community supports, palliative approach to care and specialised teams. (10)2.22
Provide a physiatrist (rehabilitation physicians). (1)2.22
Share patient history and doctor reports with adult hospitals. (65)*2.22
Improve funding (overall importance rating=2.20)
Personal funding and eligibility criteria2.33
Create a Disabled Status Card to prove needs when applying for equipment and services. (50)*2.74
Provide support for young adults with children to manage all aspects of child care. (57)2.70
Support transportation needs for recreation and leisure activities.(29)2.65
Offer group homes in more cities. (6)*2.57
Ensure better management of equipment so it can be reused or recycled. (39)*2.48
Incorporate shared ride service for those with disabilities. (5)2.43
Develop resources to help with applications for independent living programmes. (19)2.35
Coordinated funding and services2.07
Develop a coordinated approach by all ministries and agencies involved in Community Living B.C. (63)*2.52
Develop a broader definition of palliative approach to care that includes dedicated funding. (26)*2.39
Provide advocates to help those with palliative conditions access programmes/funding. (46)*2.39
Revise the conditions of Registered Disability Savings Plan to ensure timely availability. (30)2.30
Allow income exemptions for person with disabilities to receive Student Aid BC, loans and grants. (58)2.13
  • The number in brackets represents the original statement number on the cluster map.

  • *Statements most important for YAs (compared with parents and health and community providers).

  • YA, young adult.