Our Research Spotlight is a series that focuses on a themed literature search of new research in a particular area of children’s palliative care, together with a commentary from a practitioner or academic that highlights some of these research articles and discusses their implications for practice.
The focus of this bulletin shines a light on Transition, with an editorial by Carrie James, ECHO Transition Partnership Manager, Hospice UK
Recently the care of young adults with healthcare needs ‘transitioning’ from children’s services to adulthood has gained national attention and focus, with professionals understanding more about how we can facilitate support. In practice and as evidenced in research, it is clear more young people with complex and life limiting conditions are surviving into adulthood and there is now an unprecedented need to provide the right care (Stepien et al, 2021; Young et al, 2018). Over the years there has been considerable growth in literature and the development of tools, pathways and standards to help us further improve the care and support we provide to young adults and their families.
As professionals we strive to provide high-quality, developmentally appropriate health care services and we are in the ideal position to support children, young adults and their loved ones pre, during and post transition. The literature suggests multiple concurrent transitions should be considered, taking into account other life events. We know that young adults and their families experience high levels of stress during times of change and uncertainty during transition. The healthcare system alone is a complex and uncertain system to navigate and current research supports the need for a collaborative approach to continue to make improvements in holistic care and support.
Research by Stepien et al (2021 f mirrored the findings of prevalence research within the UK and identified care coordination as being central to ensuring smoother transitions of care but acknowledgeing that the interface between community, hospital and palliative care is particularly complex. Young adults with life-limiting conditions report that they can feel ‘lost’ or ‘alone’ as services that they previously received may no longer be available as they reach adulthood. It has been well reported that fragmented health and social care systems do not meet the expectations and needs of patients and families and further service development and commissioning is necessary to address these gaps in provision.
Inpatient, home, day hospice care or respite care is considered an essential component of palliative care, an important and valuable resource which many young adults and families depend upon. Pilkington et al (2019) report this need can be unmet post transition, with young adults unable to access provision. Professionals need to work in partnership with young adults, their families and commissioners to achieve the goal of more integrated and seamless services, working proactively in a multi professional way to ensure the holistic needs of young people are appropriately recognised and addressed. There are excellent examples of short breaks and respite provisions which have achieved positive outcomes for both young adults and their families, offering clinical care and peer support.
Lack of respite care and short breaks can leave families at breaking point, which can result in emergency provision rather than a planned and coordinated stay. Jarvis et al (2022) discusses lack of continuity of care which may lead to increases in emergency hospital visits specifically around the time young adults with life limiting conditions transition to adult healthcare. The time which a young person stops receiving some of the services they previously received can lead to a sense of ‘falling off a cliff edge’, this is reflective of what has been shared anecdotally and within wider research.
Young adults may have varying levels of complexity, with degenerative, progressive and diverse needs which brings about the assumption that conversations such as aspirations, sexuality, relationships and end of life will be challenging. Previous research shows that sexuality is often not sufficiently addressed in this population. Sexuality is a basic human need, but it may be perceived as an uncomfortable or difficult subject to tackle which leads to missed opportunities. Earle and Blackburn (2021) worked to improve self-reported competence and training of palliative care workers and improved access to sex education, privacy and safety. It is important for those working with young adults to afford them the time and the privacy to discuss what is important to them, to recognise that sexuality and relationships for young adults is important. It is fundamental that care staff have the knowledge and confidence to discussrelationships, intimacy and sexuality with young adults, their families and carers.
Adult palliative care providers may struggle to accommodate young adults with specialist needs due to case complexity, eligibility and resource capacity. Equally, for some families the move to adult care can feel daunting and it can be difficult to determine young adults’ understanding and readiness to engage with adult services. Young adults and their families may require additional support when moving to adult care to help maximise health outcomes and engagement. Recent research has helped gain a better understanding of the factors which may impact and influence engagement. Jindal-Snape et al (2019) seeks to address the gaps in literature, obtaining qualitative data from interviewing young adults and family members. The voices of young adults should be at the heart of the decision-making process. There is a need for further investment in palliative care research and for the voices of young adults to be heard.
The NHS Long Term Plan (2019) acknowledges the impact of transition and suggests a 0-25-year service will offer person centered and developmentally-appropriate care, based on need rather than age. Young people with life-limiting conditions have a diverse range of complex health, social and wider needs and there should be a greater focus on joining up services for them, if we are to reduce health inequalities for this population. We must ensure that the workforce, which encompasses both the children and adult sectors, have the necessary funds, training, skills and resources to deliver equitable, high quality and developmentally appropriate care.
Earle S & Blackburn M. Young adults with life-limiting or life-threatening conditions: sexuality and relationships support. BMJ Supportive & Palliative Care. 2021; 11(2): 163-169
Jarvis S, Flemming K, Richardson G, Fraser L. AdFt healthcare is associated with more emergency healthcare for young people with life-limiting conditions. Pediatric Research. 2022; Feb 12. doi: 10.1038/s41390-022-01975-3. Epub ahead of print
Jindal-Snape D, Johnston B, Pringle J, Kelly TB, Scott R, Gold L, et al. Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals. BMC Palliative Care. 2019; 18, 30. https://doi.org/10.1186/s12904-019-0414-9
NHS. The NHS long term plan [Internet]; 2019 Available from: https://www.longtermplan.nhs.uk/ [Accessed 15 Sept 2022]
Pilkington G, Knighting K, Bray L, Downing J, Jack BA, Maden M, et al. The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review. BMJ Open. 2019; 9:e030470. doi: 10.1136/bmjopen-2019-030470
Stepien KM, Kiec-Wilk B, Lampe C,Tangeraas T,Cefalo G, Belmatoug N, et al. Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey. Frontiers in Medicine. 2021; Feb 25;8:652358. doi: 10.3389/fmed.2021.652358
Young, L, Egdell A, Swallow V. Qualitative accounts of young-people, parents and staff involved with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions. Children and Youth Services Review. 2018; 86: 142-150