How to support children to develop and express their coping preferences around minor invasive medical procedures: children's and parents' perspectives.

Invasive medical procedures in hospitals are major sources of stress in children, causing pain and fear. Non-pharmacological interventions are indispensable in effective pain and fear management. However, these interventions must be personalized to be effective. This qualitative study aims to gain insight into children's and parents' experiences, needs, and wishes related to supporting children to develop and express their coping preferences for dealing with pain and fear during minor invasive medical procedures in order to decrease pain and fear. A qualitative study using thematic analysis was performed. Data were collected through semi-structured interviews with children and parents who had undergone at least five minor invasive medical procedures in the last year. Nineteen children (8-18 years) and fourteen parents were interviewed individually. The experiences, needs, and wishes expressed in the interviews could be classified into one overarching theme, that of the personal process, and two content-related sub-themes: feeling trust and gaining control. The personal process was divided into two different phases, that of developing and of expressing coping preferences. Children and parents both reported it as a continuous process, different for every child, with their own unique needs. Children and parents expected personalized attention and tailored support from professionals.     Conclusion: Professionals must combine clinical skills with child-tailored care. In the process of searching for and communicating about coping preferences, children's unique needs and personal boundaries will thereby be respected. This gives children and parents increased trust and control during invasive medical procedures. What is Known: • Untreated pain and stress caused by medical procedures can have severe and important short- and long-term consequences for children. Personalized non-pharmacological interventions are an essential element of procedural pain management. What is New: • A personalized coping strategy is important for children when undergoing medical procedures. Each individual child has a personal way of expressing their own coping strategy. Children and their parents need information and the space to develop and express their individual coping preferences. • Children and parents expect to receive child-tailored care from professionals including respect for their own, unique needs and boundaries. Professionals should build trustful relationships and provide appropriately tailored autonomy around medical procedures.

Exploring key elements of approaches that support childrens' preferences during painful and stressful medical procedures: A scoping review.

PROBLEM: Children undergoing medical procedures can experience pain and distress. While numerous interventions exist to mitigate pain and distress, the ability to individualize the intervention to suit the needs and preferences of individual children is emerging as an important aspect of providing family-centered care and shared decision making. To date, the approaches for supporting children to express their preferences have not been systematically identified and described. A scoping review was conducted to identify such approaches and to describe the elements that are included in them. ELIGIBILITY CRITERIA: Studies that (a) described approaches with the aim to support children to express their coping preferences during medical procedures; (b) included the option for children to choose coping interventions; (c) included a child (1--18 years). SAMPLE: Searches were conducted in December 2019 and November 2020 in the following databases: Cinahl, Embase, PubMed and Psycinfo. RESULTS: Thirteen studies were identified that included six distinct approaches. Four important key elements were identified: 1) Aid to express preferences or choice, 2) Information Provision, 3) Assessment of feelings/emotions, 4) Feedback/Reflection and Reward. CONCLUSIONS: Identified approaches incorporate components of shared decision-making to support children in expressing their preferences during medical procedures and treatments. IMPLICATIONS: Children undergoing medical procedures can be supported in expressing their coping needs and preferences by using components of shared decision-making.

Parental experiences of their infant's hospital admission undergoing cardiac surgery: A systematic review.

AIM: To explore parents' experiences of parenting a child hospitalised with congenital heart disease (CHD) and undergoing surgery. METHODS: Five electronic databases were systematically searched for articles describing the experiences of parents with a child with a CHD. A thematic analysis approach was used to identify the most common themes. RESULTS: A total of 188 articles were identified. Eight studies were included in the review. Four themes emerged, including balancing the parental role, experiencing anticipatory grief, decreasing parental stress using coping strategies and professional support. CONCLUSION: Having a child with CHD undergoing heart surgery is a stressful experience due to, among other things, the different situation-related parenting role during the hospital stay and feelings of anticipatory grief. Healthcare professionals in the PICU have an essential role in supporting parents and understanding the needs that are crucial for the parents in order to provide better support and reduce stress and anxiety. More qualitative research regarding the pathway from the prenatal diagnosis through the early childhood period is warranted.

Perspectives of parents and nurses on the content validity of the Family Empowerment Scale for parents of children with a chronic condition: A mixed-methods study.

BACKGROUND: Insight into parental empowerment is important to understanding the impact of health care policy and to supporting and strengthening parents in the care of their child. The Family Empowerment Scale (FES) is a valid 24-item instrument that measures parental empowerment. It was originally developed for parents of children with emotional disabilities. It has been translated from English into Dutch. Before using the translated FES in another context, the aim of this study was to assess the content validity of the Dutch FES in the context of children with a chronic condition in a children's hospital, according to parents and nurses. METHOD: This content validity study has a convergent, mixed-methods design. The content validity index was used to examine the relevance, according to 22 parents and 12 nurses quantitatively, on a scale and item level. The qualitative part assessed the comprehensiveness and comprehension of the FES through cognitive interviewing with eight parents and four nurses. The results of both analyses were converged to determine content validity. RESULTS: The scale-content validity index was 0.88; three items scored < 0.78 on the item level. For 10 (of 24) items, issues were noticed about the tone and clarity of wording. Participants considered the FES to be not only an instrument of research but also an instrument that could be used to give insight into the personal degree of parental empowerment. CONCLUSION: The content validity of the Dutch FES for parents of children with a chronic condition can be considered sufficient. Resolving some minor translation issues in some of the items is advised. The FES can be used in further research to examine the value of the FES in health care services, aiming to support the needs of parents and to increase their empowerment.