Understanding the life issues of young adults cared for by CHAS and the impact on their parents, siblings and professionals

Project Duration

December 2013 - December 2014

Funder

Children’s Hospice Association Scotland (CHAS)

Aims

The study aims to provide a clear understanding of the clinical problems of young adults being cared for by CHAS, with the purpose of enhancing their quality of life. In the proposed study we take clinical problems to mean the holistic, psychological, physical and developmental needs of young adults and their families due to the inseparable impact of one on the other.

Objectives

• To understand what clinical problems mean to young adults with life-limiting conditions in the global context of being a 'young adult'. 
• To gain a clear global perspective of the nature of the 'clinical' and other problems faced by these young adults. 
• To understand the impact of the clinical problems and healthcare experience on the young adults educational and life transitions, including their aspirations and unique destinations. 
• To understand the impact of the young adult's life transitions and choices on significant others (namely families, professionals) and vice versa.

Methods

To understand clinical needs and problems from the young adults' viewpoint we will identify needs of young adults with life limiting conditions who are expected to die within the next five years.

Case studies will be undertaken with 10 CHAS young adults. Individual interviews will be conducted with young adults, their families and health/other relevant professionals to explore the reasons behind clinical problems at end of life for this young adult population as well as the related needs of significant others. This will be carried out via longitudinal data collection (three serial interviews, approximately three months apart) to capture the changing needs of young adults throughout their illness trajectory over a year. As the young adults might have communication needs, we will follow the Mosaic Approach and use creative, need-specific data collection techniques to capture various aspects of the needs/problems/transition experiences of young adults.

Study Procedures

To understand clinical needs and problems from the young adults' viewpoint we will identify needs of young adults with life limiting conditions who are expected to die within the next five years.

Outcomes and Findings

Life issues were found to manifest in the form of life transitions, including transition to adulthood, relationship transitions, illness transition and personal development. These transitions were highly relevant for the young adults and impacted on them and their significant others. Such transitions were found to have associated end of life needs. Recommendations for healthcare professionals included being receptive and responsive to the changing relationship dynamics that are likely to be occurring, being aware of the common developmental goals associated with this age group, constant liaising with family members, and safely enabling young adults’ autonomy as they seek new relationships.

Stage of Development

The project is now complete. Please check this page for updates on publications.