This episode features Briony Hudson (Louis Dundas Centre for Children’s Palliative Care, UCL Institute of Child Health, London, UK
and Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK) and Linda Oostendorp, (Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK). They describe their study which aimed to explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. The study was a systematic of (quantitative, qualitative and mixed methods) research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included.
The study demonstrated that all stages of recruitment in children were under reported. Most studies did not provide information of how children were identified or invited to participate in research. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment. Consequently, future papers should clearly state (1) how eligible participants were identified, (2) how people were invited to participate and (3) why people decide to take part or not. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316663856
If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu: firstname.lastname@example.org
This episode features Wendy Duggleby (University of Alberta, Edmonton, Canada) who describes a study which aimed to (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience.
The study was a meta-synthesis review of qualitative (and mixed-method) research, which described caregiving experiences of family caregivers for community-living persons with advanced cancer at the end of life. Seventy-two studies were included.
The study reports how family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. The take home message is that family caregivers will reuire support to deal with these significant changes; however, positive outcomes are possible when based on evidence. These findings provide a framework to guide the development of supportive programs and future research. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316673548