Adult specialist palliative care services and the provision of care for young adults with complex disabilities: what are the issues? findings of a national survey

Abstract

Introduction Over the last decade the number of children with life-limiting conditions surviving into adulthood has increased dramatically and is likely to continue to increase. Engaging the Adult Specialist Palliative Care (SPC) services in the care of these young adults (YA) is essential. The YA concerned commonly have complex needs, rare conditions and a mixture of cognitive and physical disabilities. For many adult SPC teams this is new territory, and there are many potential barriers to care. Provision of SPC services for these YA needs to be appropriate, available and equitable- and in practice this is often a challenge. With this in mind, we endeavoured to identify and explore the barriers to care. Methodology We conducted a telephone survey using a semistructured questionnaire. All adult SPC in-patient units in Wales were invited to participate. The Clinical Lead was interviewed and we explored their experiences, views and concerns regarding proving a service to these YA. Results 13/14 units participated. Five of the units had had experience in caring for YA with complex needs but none had looked after more than 2. There was enthusiasm for providing service to YA but this was tempered by some important concerns. Including Education/training of staff, adequate staffing levels and funding. There were several practical issues including management of non-invasive ventilation and ventricular-peritoneal shunts that reduced general confidence. Interestingly, there was a shift in attitudes over the course of the interview, resulting in 12 of the units feeling confident to admit the hypothetical patients (with Cerebral Palsy and Duchenne Muscular Dystrophy). Conclusion The attitudes among the adult SPC units towards the care of YA with complex needs are generally positive. There are, however, specific issues and concerns that need to be addressed in order to safely progress in developing an appropriate service for this patient group.

Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study

“… 3 4 Lack of experience in caring for this group is a concern for adult SPC service providers and young people. 5 6 In recent years, healthcare professionals, service providers and commissioners have become aware of these issues making a number of recommendations, 7 including the training of adult service providers. 8 9 Training and education of healthcare professionals is recognised as a barrier to palliative care provision, in general.…”

“… 15 Preliminary work, including discussions with stakeholders, such as adult SPC staff, young people with life-limiting conditions and their parents, found concerns among all groups of the lack of skills and knowledge needed to provide appropriate care due to limited exposure to this patient group, among adult SPC teams. 5 6 Adult SPC services aim to provide holistic care and have expertise in caring for older adults, usually over the age of 65, focusing on reducing symptom burden and psychosocial issues with a non-curative diagnosis of cancer or other illnesses. 16 There is also an expectation in adult palliative care that patients are more independent in terms of self-care and management of health services.…”