MAGICYL stands for Meaning making And Generativity In Children and Young people with Life limiting and life threatening conditions.
There are over 50,000 children and young people (CYP) living with a life-limiting condition or life-threatening (LLTC) in England, which is predicted to increase with technological and medical advancements (Together for Short Lives, 2018). While these advancements have resultedin better management of these conditions, there remains uncertainty around prognosis with many CYP living shortened lives (Together for Short Lives, 2018). The impact of LLTC on CYP, parents, brother and sisters and the wider family is significant in terms of their emotional wellbeing (Liben et al 2008; Rodriguez and King 2009). Improving wellbeing throughout their shortened life journey,especially towards the end of life, requires care that addresses the psycho-social and spiritual needs of CYP and their families but can be challenging for health professionals (Aldridge et al., 2017). Palliative care supports the social, psychological and spiritual needs of people, with interventions that are specifically directed towards improving self-esteem, psycho-social functioning, emotional and spiritual wellbeing, and relationship building beginning to emerge (Hall et al 2009; Rodriguez & King 2014). However, there remains a significant unmet need in relation to meeting the psycho-social and spiritual wellbeing of CYP with LLTC, who have a heightened risk of mental health problems (Booth et al, 2018). Supporting people to cope with their condition and integrating psycho-social support into care pathways can improve mental health and wellbeing outcomes.
An evidence-based psycho-therapeutic intervention that has been found to improve psycho-social and spiritual wellbeing for people with LLTC through a process of life-review and meaning-making is Dignity Therapy (DT) (Chochinov et al 2008; Chochinov et al 2011). DT involves facilitating patients to discuss their valued memories, accomplishments, life lessons and hopes for significant others, and aims to bring about a sense of meaning and purpose for patients at the end of life, and their families (Chochinov et al 2005). DT emerged from qualitative studies undertaken with adult cancer patients receiving palliative care to understanding the cancer disease trajectory, which culminated inthe development of the dignity model (Chochinov, 2002); the Dignity Conserving Model of Care (DCMC). During DT, trained professionals undertake one-to-one semi structured interviews with individuals, usually lasting for about an hour. The interview is structured by drawing on the nine questions of the DCMC Therapy Questionnaire Protocol (DTQP) (Chochinov 2002; Chochinov et al 2008). The interview is digitally recorded, transcribed, edited and returned to the patient, who can then make any changes before the document, called a generativity document or written legacy, is finalised. Many patients share these documents with significant others prior to their death, providing opportunity for meaningful conversations that can assist bereavement processes (McClement et al 2007). This person-centred therapeutic approach can also help health professionals understand individuals in the wider context of their lives and tailor support to their needs (Chochinov, 2012).
There is a growing evidence-base supporting DT in adult palliative care settings; compared to standardpalliative care DT is more likely toimproved spiritual wellbeing, overall quality of life, hope and sadness/depression scores (Juliao, 2014; Rudilla, 2016), and greater satisfaction with care (Dose &Rudy 2018 Hall et al 2009; Martínez 2018), and has been viewed positively received by patients and their family members (Martínez et al, 2017). Health professionals report DT is a brief and flexible intervention that can be integrated into established supportive palliative care palliative care practices (Martínez et al, 2017).
Our evidence synthesis of published research focusing on CYP with LLTC found only four published studies about DT and related meaning making interventions for this age group (Rodriguez et al, 2018); one focused on young people (7-17 years) (Akard et al 2015), the other three included young people but mean ages were 50-70 (Chochinov et al 2005; Chochinov et al 2011; Vaghee et al 2012). In summary, and while recognising the limited evidence-base, we identified:
- DT has potential to improve psycho-social wellbeing, emotional functioning, dignity and hope for CYP with LLTC;
- DT is unique, welcomed and perceived as helpful for CYP and the family;
- DT has not been widely used or evaluated specifically for CYP with LLTC. The studies that have included CYP have largely focused on older children / young people with cancer;
- No UK or European studies were identified that have evaluated the acceptability, feasibility and effectiveness of DT or related meaning making interventions for CYP with LLTC.
Our review highlighted missed opportunities to support CYP with LLTC and their families to engage in meaningful discussion about dignity, meaning making and end of life care in a structured way. Consequently, the authors of this article, formed the MAGICYL (Meaning making And Generativity In Children and Young people with Life limiting and life threatening conditions) project team, bringing together our expertise in advocacy for CYP with LLTC, palliative care, psycho-therapy, children’s nursing and spiritual care, to consider how to apply the concept of DT and the type of intervention/s that would be appropriate for CYP with LLTC. We were cognisant that Patient Public Involvement (PPI) would be a central tenant of all MAGICYL activities for several reason; 1) It is a moral obligation that healthcare delivery and research is responsive and addresses patient or in this care CYP / family priorities; 2) The sensitivity required when delivering DT type interventions must consider the views of CYP, their families and health professionals delivering care; 3) Involvement must not be tokenistic to meet funding body requirement; 4) The design and methods of undertaking DT research are appropriate for CYP; 5) PPI involvement is vital to shape and ensure the patient voice remains the focus of the research, even in the early stages of developing a programme of research. The lead author (LW) is a core member of the MAGICYL team, and a young adult with a LLC life-limiting who has been involved in this study from its inception, co-designing our activities including preparing participant information and collecting information from young people.
The broad aim of our PPI activities was to explore the whether the concept of DT and DT type intervention/s would be acceptable for CYP with LLTC and health professionals.
The specific objectives are to:
- Ascertain CYP views of DT as a concept and to consider what types of interventions might be meaningful for CYP with LLTC, and how they would like these to be delivered;
- Explore health professionals, who support CYP, with LLTC perceptions of DT as a concept and possible supportive intervention for this patent group;
- Identify what, if any, meaning making activities are used in clinical practice for CYP with LLTC;
- Evaluate the appropriateness of the DTQP for CYP with LLTC.
Dignity Therapy is a psychotherapeutic intervention that aims to bring about a sense of meaning and purpose for patients at the end of life, and their families. During Dignity Therapy trained professionals facilitate patients to discuss their valued memories, accomplishments, life lessons, and hopes for significant others. Dignity Therapy has not been adopted in child health settings. We aimed to explore the concept of Dignity Therapy and the acceptability of a Dignity Therapy type intervention/s for children and young people with life-limiting and life-threatening conditions and health professionals, and report our patient and public involvement activities.
Participatory consultations involved Death Café and workshops with over 80 health professionals in two hospice settings, and a range of social media activities including and feedback from six young people with life-limiting conditions via a closed on-line group. Data included field notes, workshop outputs (‘post-it ideas storm’ and ‘diamond ranking’) and social media postings that were analysed using thematic analysis.
Dignity Therapy could be a supportive intervention for children and young people with life-limiting and life-threatening conditions to promote open conversations about dying between the child /young person, family members and health professionals but needs adapting to meet their needs. A tool kit of interventions, appropriate to a range of ages and cognitive abilities was suggested, for example a storybook for young children and a digitalised version of Dignity Therapy for older children, acknowledging that young people with life-limiting and life-threatening conditions may have lived most of their lives in the technological age.
Dignity Therapy has potential to improve the psycho-social and spiritual wellbeing of children and young people through recalling memories and thinking about the things that are important to them and what they want to be remembered for. Developing and evaluating Dignity Therapy type interventions for children and young people with life-limiting and life-threatening conditions needs to take in to account the perspectives of children and young people, the family and professionals delivering services.
What Participants Have Said
‘There is a fear of death in general and to a degree, those who work within palliative care and especially with children. Although dying is an end point for us all, palliative care is about quality of life for those with shortened lives’Death café participant
‘It is very hard to live with a life-limiting illness and Dignity Therapy seems to focus on giving validity to the life of someone with these types of illness. Looking back to see what made them happy and what made their life fulfilled. Not just focusing on hospital and medical stuff which can take over the lives of people with these illnesses’Young Person 2
‘The hospice supports children who are not expected to live beyond 19 years. For those whose prognosis may be more favourable or unknown, very little can be offered. Being able to offer Dignity Therapy could offer some level of psycho-social support to this group’.Death café participant
‘I think depending on the age/experience/illness of the child, would depend on what approach you would use. I think anyone who is facing death, they would want to know that someone is going to remember them, and something made their life worthwhile. If someone has been diagnosed with a terminal illness that is going to take them quickly, they will need an approach that fits with their time scale’Young Person 2
‘Dignity Therapy could be adapted to be delivered at different age stages/transitions of care/stages of disease trajectory’Death café participant
‘Dignity Therapy could be the basis for a supportive intervention for CYP not just at the end of life in palliative care but leading up to (if diagnosis is difficult) or shortly following a life threatening/limiting diagnosis and thereafter’Death café participant
‘This could be a very beneficial tool and would empower CYP’Workshop participant
‘I think I would want to do it alone so that I can express my true feelings without being influenced by the thoughts or emotions of my family. Also then it would be a surprise to them when completed’Young person 1
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