Health care professionals’ perspective on children’s participation in health care situations: encounters in mutuality and alienation

Härder, Maria; Söderbäck, Maja; Ranheim, Albertine

doi:10.1080/17482631.2018.1555421

Cited by 15 publications

(14 citation statements)

References 18 publications

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“…To be able to protect themselves and use strategies that could decrease fear or pain during care and treatment, children needed to be involved and empowered by adults. Although research reports the importance of including children in their own care (29,30), there seems to be a lack of communication between healthcare professionals and children of how this can be achieved. It is important to understand children's own desire to participate in healthcare situations in order to support their opportunities to participate (19).…”

Section: Discussionmentioning

confidence: 99%

Children’s individual voices are required for adequate management of fear and pain during hospital care and treatment

Kleye

Hedén

Karlsson

et al. 2020

Scandinavian Caring Sciences

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Background Children often report both fear and pain in conjunction with clinical care and treatment. Interventions developed in the field have still not been sufficient to prevent and relieve children's fear and pain. More knowledge, from children’s own perspectives, is needed about how they deal with their experiences. Aim To explore child‐identified strategies that children use to manage fear and pain during needle‐related medical procedures in hospital. Methods Interviews with children, age 4–12 years, with experience of hospital care were analysed qualitatively using content analysis. Results Children have self‐identified strategies for dealing with fear and pain during hospital care and treatment. The strategies vary depending on examination or treatment and on how the child felt at that particular day. Children describe what they can do themselves, how adults can empower them and support from surroundings as strategies that give them a choice and a voice. Children wished to have influence, decide when and how information should be given, scream out loud or squeeze something hard, to deal with fear and pain. The results also show that children tried to be brave, gain control and think positively. Something nice to look at and opportunities to play with others also contributed. Conclusions Strategies vary between children and are used differently on different occasions. Healthcare professionals pose a threat to the child's needs and ability to use their strategies due to lack of knowledge of the child’s chosen strategies.

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Section: Discussionmentioning

confidence: 99%

Children’s individual voices are required for adequate management of fear and pain during hospital care and treatment

Kleye

Hedén

Karlsson

et al. 2020

Scandinavian Caring Sciences

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“…To change and restructure the working procedures for children’s participation in practice, it is crucial to consider both the individual and contextual factors such as attitudes, values, knowledge, readiness for behavioral change, culture, resources, and priorities [ 55 ]. For example, it has been maintained that pediatric care needs guidance and support [ 56 ], education [ 57 ], training [ 58 ], and interventions and methods (for example, eHealth services such as Sisom) [ 29 , 53 , 59 , 60 ] to increase children’s participation. This entails extensive effort by both the health care services provided for children and the professionals who work there to increase their ability to involve children in decision making.…”

Section: Discussionmentioning

confidence: 99%

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

Gilljam¹,

Nygren²,

Svedberg³

et al. 2020

J Med Internet Res

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Background For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective The aim of this study was to investigate children’s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children’s levels of participation guided by a framework based on Shier’s model of participation. Results Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier’s participation model: children were listened to, children were supported to express their views, and children’s views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions This study shows that the eHealth service Sisom can increase children’s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children’s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.

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“…Existing research indicates that children are not able to participate in decision-making processes often enough and their voices are either not being heard or not taken seriously (van Bijleveld, Bunders-Aelen, & Dedding, 2019;Collins, 2017;Connolly & Masson, 2014;Husby, Slettebø, & Juul, 2018;Kosher & Ben-Arieh, 2019;McCarthy, 2016;Moran-Ellis & Tisdall, 2019;Pert, Diaz, & Thomas, 2017;Ruiz-Casares et al, 2017;Saebjørnsen & Willumsen, 2017). Kiraly and Humphreys (2013) argued that adult perspectives continue to dominate and take priority over the wishes and needs of children ;Harder, Söderbäck, and Ranheim (2018) similarly emphasised that children are still positioned as passive participants. Husby et al (2018) argued that this low level of child participation opportunities does not match well with the legal right of children to voice their opinions and be heard.…”

Section: Introductionmentioning

confidence: 99%

A systematic review of children’s participation in child protection decision‐making: Tokenistic presence or not?

Toros

2020

Children & Society

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This article examines children's views on and experiences with participation in the child protection system's decisionmaking process. The systematic review follows the PRISMA statement and includes 12 peer-reviewed articles published in academic journals from 2006 to 2017. Findings suggest that children's contact with their worker was limited or nonexistent, which minimised opportunities to express views regarding their situation; child-worker contacts lacked dialogue, information about the process of intervention and trusting relationships, meaning that without a voice, children were not engaged in making decisions. Although data are limited, they suggest little or no dialogue with children by child protection workers. Furthermore, children voiced their experiences of not being informed of or understanding the process or decisions made about their lives.

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Health care professionals’ perspective on children’s participation in health care situations: encounters in mutuality and alienation

Cited by 15 publications

References 18 publications

Children’s individual voices are required for adequate management of fear and pain during hospital care and treatment

Children’s individual voices are required for adequate management of fear and pain during hospital care and treatment

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

A systematic review of children’s participation in child protection decision‐making: Tokenistic presence or not?

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