Children as decision-makers in health care - An integrative review

Abstract

The aim of this integrative review is to describe a child's participation in the decision-making process related to treatment. The goal is to increase knowledge of the ways that healthcare professionals can use to support a child's decision-making ability. The data were gathered from the Medline and Cinahl databases and the data consisted of 23 articles which were published in scientific journals during 2002-2013. The articles were analyzed with an inductive content analysis. The results of the review show that a child's knowledge skills, wishes and values were often not taken into account and their participation was limited. Children were taken into account to varying degrees, depending on the time available and the individual healthcare professional. The personnel often made the treatment decisions on behalf of the families. This was greatly influenced by the attitudes of the personnel and parents and the ability of the healthcare personnel to work with child patients. The professional language used in discussions was shown to be an obstacle to flexible cooperation.

Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context

“…The healthcare professionals in this study had an ambition to allow as much patient participation as possible but admitted that children were in reality not able to decide very much about their care and when doing so only in small and relatively trivial matters. Our findings are consistent with those of other researchers who describe how children are offered trivial choices but rarely allowed to share power and to take part in decisions that have an impact of their medical care and treatment (L. Moore & Kirk, ; Schalkers, Parsons, Bunders, & Dedding, ; Virkki et al., ). A review of shared decision‐making (SDM) interventions in paediatric care (Wyatt et al., ) showed similarly that such interventions did not lead to children's involvement in medical decisions.…”

“…Several benefits have been found to relate to children′s participation in health care, such as feeling valued and feelings of greater control and less anxiety (Coyne, ; Coyne & Gallagher, ; Dixon‐Woods, Anwar, Young, & Brooke, ). It is clear that there is an increasing awareness of the benefits of child participation, yet it appears that children are rarely or inconsistent involved in healthcare processes (Coyne, ; Koller, ; Virkki, Heino Tolonen, Koskimaa, & Paavilainen, ) and that barriers exists for patient participation in the paediatric healthcare context (Ruhe et al., ; Wangmo et al., ). Moreover, it has been questioned whether the concept of participation has been fully implemented in healthcare organizations (Coyne & Gallagher, ).…”

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

“…This communication barrier has resulted in children traditionally being assigned a passive role in their own health care, whereas their parents and clinicians act as the principle decision‐makers . Simultaneously, parents and clinicians often serve as proxy reporters in research as well rendering the children's experiences of their own illnesses invisible, reinforcing that child health care systems neglect the needs and preferences of children …”

“…Its name is derived from the Norwegian phrase “Si det Som det er “ meaning “Tell it how it is.” Sisom eliminates several limitations associated with previous paper instruments, such as the disregard of the child's development stage or the use of proxy or adult‐adapted versions by using spoken text, sound, and animations to depict symptoms that even young children, who cannot read, can respond to . This tool was created to encourage children, aged six to 13, to actively participate in their own care building on previous research showcasing that their health information can be reliably and validly collected . Since the development, global research efforts have contributed to linguistically validating, testing the usability, optimizing the design, and evaluating the use of Sisom in practice …”

Promoting participation in healthcare situations for children with JIA: a grounded theory study

“…Participation, defined as taking active part in consultations with healthcare professionals (Fumagalli, Radaelli, Lettieri, & Masella, 2015 ), has increasingly become a part of common practice in healthcare as a result of qualitative research and government regulation (Shay & Lafata, 2014 ). In spite of this development, and the existence of laws and regulations concerning children's rights (Department of Health and Children, 2000 ; Swedish-Parlament, 2014 ; United Nations Convention on the Rights of the Child, 1989 ), those that encompass involvement and participation in healthcare are unsatisfactorily applied in praxis (Clark et al, 2009 ; Virkki, Tolonen, Koskimaa, & Paavilainen, 2014 ). Research shows that the abilities of children to express their needs and wishes in healthcare is restricted, due to their dependence of others (Mårtenson & Fägerskiöld, 2008 ) and a tradition of communication that is focused on healthcare professionals and parents (Butz, Walker, Pulsifer, & Winkelstein, 2007 ; Young, Moffett, Jackson, & McNulty, 2006 ).…”