The experience of partners supporting adolescents and young adults with cancer

Abstract

Aims In a larger study where the aim was to investigate choice and control in decision making, the role of partners was significant. Reported here are the experiences of those partners of young people with cancer. Design A qualitative, exploratory case study approach was used. Methods In the larger study, 22 participants were recruited including five adolescents and young adults with cancer, two sets of parents/carers and three individual parents, five healthcare professionals linked to the adolescent or young adult with cancer and five friends or partners. Data were collected between February 2014 and February 2015 and included interviews, non‐participant observation and documentary analysis. Results Three themes were identified relating to partner experience derived from partner and patient interview data: “practical support”, “putting your partner first” and “acting as a confidante/ally”. Conclusion These findings reveal new knowledge of partner experience when adolescents and young adults have cancer. Richer in‐depth understandings of partner experience are required to improve the care of adolescents and young adults with cancer and those around them. Impact These findings will inform the development of guidance and further research which will enhance the knowledge of partner experience for those involved in cancer care in the adolescent and young adult age group.

Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma

“…Life Interrupted echoes previous studies involving AYA living with other cancers (Davies et al, 2015, 2018, 2019; Grinyer, 2007; Soanes & Gibson, 2018; Woodgate, 2006; Zebrack et al, 2014). However, our study's multi‐perspective focus on the specific experiences of AYA and their families living with MM raised three important considerations: public awareness and education, being an AYA and age‐appropriate care and future research.…”

“…Thirdly, research into AYAs with cancer has focused on the more common forms of cancers, such as leukaemia, hodgkin's lymphoma and bone cancer with MM being understudied (Davies el al., 2018, 2019; Fern et al, 2013; Lavender et al, 2019; , Pearce et al, 2020; Taylor et al, 2013; Zebrack et al, 2014). Research by Lavender et al, (2019), through a narrative inquiry with health professionals, explored one specific cancer and how AYAs were prepared for inclusion in clinical trials.…”

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

“…Several studies found that partners, as well as parents, tended to put aside their own needs and fully devote themselves to caregiving [ 20 , 26 , 35 , 41 ]. They also tended not to show their worries and emotions to the patient or other family members, as there was a frequent dread of inciting the same fear or worry in others, as well [ 19 , 37 ].…”

“…Activities of daily living were often shifted to the caregivers, including providing help with the washing, dressing, and transportation of the patient [ 18 , 21 , 39 ], administering drugs and food, managing and planning hospital visits, providing emotional support [ 17 , 19 , 20 , 21 , 39 , 44 ], and attending and advocating during visits to the healthcare professional [ 19 , 20 , 21 , 24 , 26 , 39 ]. Caregivers also assisted their patient in making difficult medical decisions [ 17 , 41 ], searched for specific information to pass on to the patient [ 19 , 42 ], took care of their children, as the patient often did not have the time or energy [ 42 ], and actively managed manifestations and signs of the disease [ 21 , 39 ]. In addition, mothers with caregiver duties helped to arrange plans for the AYAs’ future, such as for work, housing, or insurance [ 39 ].…”

“…Caretakers also helped AYA cancer patients return to society during this process. For instance, partners helped them study, keeping them from dropping out of academia [ 41 ], as well as preparing them to return to their peers or colleagues by practicing conversations they may engage in or questions they may receive [ 42 ]. The responsibilities associated with caregiving can often result in reduced free time and availability for hobbies and relaxation [ 17 , 20 , 37 ].…”