How do 16-18-year-old adolescents experience and respond to parental terminal illness and death? : an interpretative phenomenological analysis

Approximately 41,000 young people, under the age of 18, are bereaved of a parent each year within the U.K. (Child Bereavement Network, 2014; Winston’s Wish, 2016), and a significant number of these deaths will have been preceded by a period of terminal illness (TI). Adolescents are considered to be particularly susceptible to negative psychosocial outcomes when a parent is unwell (Grabiak, Bender & Puskar, 2007), yet adolescents as a group are less likely to access mental-health services (Reardon, Harvey, Baranowska, O’Brien, Smith & Creswell, 2017). Thus, whilst adolescents of terminally ill (TI) parents may present a vulnerable group, they may also be difficult to engage and subsequently support (Bremner, 2000). There has also been little consideration of how adolescents experience parental terminal illness (PTI), particularly considering their perceptions and experiences of support during this period. This study qualitatively explores the experiences of six individuals who had a parent diagnosed with a TI during late adolescence. Their experiences are explored in terms of their understanding, processing and adjustment to their parent’s TI, both as an individual, and in the context of their wider family and social setting. Their experiences and perceptions of support are additionally explored; considering the role of supportive individuals, services and interventions. Interpretative Phenomenological Analysis was employed to analyse participant data. Participants were individuals who had a parent diagnosed with a terminal illness aged 16-18. Four superordinate themes emerged from the data: 1) ‘Changing family dynamics’ 2) ‘grappling with adolescence and adjustment to loss’ 3) ‘Barriers to feeling/being supported’ 4) ‘Living with the consequences’. Participants relate the profound impact that PTI during adolescence has had and continues to have on their lives. Whilst there are prominent threads of difficulty and distress, elements of positive change and growth are also highlighted. Implications are discussed in terms of service provision and design, including therapeutic recommendations for counselling psychologists and other professionals working with this group