A moment just for me – parents’ experiences of an intervention for person-centred information in paediatric oncology

Abstract

Information can help parents of children with cancer by reducing uncertainty and giving them a sense of control in a chaotic situation. Although providing information to parents is a core activity of paediatric oncology nursing, few studies focus on interventions for informing parents. Thus, the aim of this study is to evaluate parents' experiences after participating in a person-centred information intervention for parents of children with cancer. Method: This study is part of a process evaluation of a person-centred informational intervention in paediatric oncology for patients' parents. Qualitative semi-structured interviews with 13 parents who had taken part in the intervention were analysed using qualitative content analysis. Results: An opening for healing emerged as the overarching theme, consisting of three categories. Gaining a deeper understanding of the entire situation describes how parents benefitted from processing current topics and moving forward by learning. Caring reflections in a safe space describes how parents appreciated having a moment just for themselves and feeling better by venting their feelings. Meeting a competent and compassionate nurse describes how parents experienced trust and being listened to. Conclusion: Having individual information meetings integrated as a primary nursing responsibility, mediated by competent and compassionate nurses also responsible for the care of the child, could enhance person-centred care and individualise parental education.

Effects of Person-Centered Information for Parents of Children With Cancer (the PIFBO Study): A Randomized Controlled Trial

“…Participants in the intervention did, however, demonstrate higher levels of knowledge in certain domains (biophysiological and functional) than the control group. This is also mirrored in the separate qualitative evaluation of this study, where parents in the intervention arm reported a deeper understanding of their entire situation (Ringnér et al, 2021).…”

“…In the present study, the topics raised in the intervention varied from consequences of the disease and treatment on the child's health to emotional aspects of the parents’ situation. Encouraging parents to choose topics according to their own specific wishes and needs and arranging for them to discuss these with a competent and compassionate IN (Ringnér et al, 2021) reflect core components of person-centered care that aims to offer a respectful and individualized holistic nursing approach based on the person's choice (Morgan & Yoder, 2012). This is further in correspondence with recommendations about giving parents an opportunity to “dig deeper” into specific topics later in the treatment trajectory (Landier et al, 2016).…”

Impact of family-centered care interventions on parental related outcomes among parents of children with cancer: A Systematic Review

“…One study was conducted in both USA and Saudi Arabia (49). Ten studies used non-randomized controlled trial intervention (36-39, 42, 43, 45-48), four studies were randomized controlled interventional studies (34,35,44,49), and two study used qualitative interviews (40,41). All studies selected for nal analysis were published from 2014 to 2022.…”

“…All studies selected for nal analysis were published from 2014 to 2022. Four studies were published in 2019 (35,36,44,48), another four studies in 2021 (38,41,43,49), two studies in 2022 (34,40), two studies in 2018 (39,47) and one study in 2014 (37) and 2015 (42).…”

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

“…In a qualitative study sharing the experiences of families regarding end‐of‐life communication in pediatric oncology, families expressed the need for continuous, open, and supportive communication during the disease process, as well as in the end‐of‐life phase (Robert et al, 2022). Studies investigating the impacts of effective communication processes with children with cancer and their families have found that it facilitates the family's decision‐making process, reduces uncertainty regarding the situation by fostering a sense of control, enables families to more easily express their emotions, supports hope throughout the process, and enhances the quality of life for both the children and their families (Kerr et al, 2019; Ringnér et al, 2021; Sisk, Harvey, et al, 2022; Sisk, Keenan, et al, 2022).…”