Dataset Information

"Will You Still Feel Beautiful When You Find Out You Are Different?": Parents' Experiences, Reflections, and Appearance-Focused Conversations About Their Child's Visible Difference.

ABSTRACT: To investigate parents' reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: "Managing emotions: A dynamic process," "Through another lens: External reminders of difference," and "Awareness of difference: Approaching the child." Findings suggest that although parents learned to accept and love their child's visible difference, external factors such as appearance-altering surgery and other people's reactions activated difficult emotions in parents. Parents struggled to decipher whether and when to raise appearance-related issues with their child, and how this could be done without distressing the child. Anticipatory guidance that facilitates positive appearance-focused conversations both within and outside the home seems to be needed. Parenting skills could also be strengthened by preparing parents for social reactions to the child's visible difference, and their child's changed appearance following surgery.

SUBMITTER: Feragen KJB

PROVIDER: S-EPMC8739583 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature

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"Will You Still Feel Beautiful When You Find Out You Are Different?": Parents' Experiences, Reflections, and Appearance-Focused Conversations About Their Child's Visible Difference.

Feragen Kristin J Billaud KJB Myhre Anita A Stock Nicola Marie NM

Qualitative health research 20211001 1

To investigate parents' reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three themes emerged: "Managing emotions: A dynamic process," "Through another lens: External reminders of difference," and "Awareness of difference: Approaching the child." Findings suggest that although parents learned to accept and love their child's visib ...[more]

PMID: 34596475

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Project description:BackgroundIn primary healthcare, conversations between clinicians and parents about young children's overweight are key to providing support and initiating weight management. However, given the sensitivity of this topic, these conversations are difficult for both clinicians and parents and are sometimes delayed or avoided. To understand the emotional impact of these conversations, this study aims to shed light on parents' experiences following conversations with primary care nurses about their child's overweight.MethodsParticipants were recruited through a childhood obesity randomized controlled trial (RCT) conducted in Sweden. Telephone-based semi-structured interviews were conducted with 17 parents (mean age 40; the majority were women (n = 12/17), had a university degree (n = 14/17) and were born in Sweden (n = 13/16)). Their children were between 3 and 7 years old (mean age 4.8 years) with overweight (n = 7) or obesity (n = 10). The interviews were recorded, transcribed, and analyzed using thematic analysis.ResultsTwo main themes were developed. Theme 1, 'Receiving the overweight/obesity diagnosis', explores parents' reactions to the conversation with the primary care nurse. Depending on how the nurse presented the topic, conversations either fostered an alliance between the parent and the nurse, encouraging parents to reflect and develop insights about the child's and the family's needs (subtheme Conversations that empower), or felt limited, uncomfortable, or belittling (subtheme Conversations that provoke resistance). Theme 2, 'Parenting a child with a formal diagnosis of obesity', explores challenges parents faced following the weight conversations, including managing their own feelings and concerns (subtheme Fear of transferring weight anxiety), dealing with others' reactions (subtheme Involve family and manage surroundings) and asking for and receiving support from health care professionals (subtheme Obtain support from health care professionals).ConclusionsWhile conversations with primary care nurses about children's weight were often emotional, most parents felt these conversations were ultimately helpful, as they encouraged them to enact positive lifestyle changes. Importantly, when nurses initiated conversations in a responsive, non-blaming way, inviting parents to reflect on their situation, parents felt more supported and empowered. These findings convey the importance of providing communication skills training to pediatric healthcare professionals, with particular focus on childhood overweight and obesity.Trial registration numberClinicalTrials.gov NCT03800823 ; 11 Jan 2019.

Project description:ObjectiveVisible differences in appearance are associated with poor social and psychological outcomes. Effectiveness of non-surgical cosmetic and other camouflage interventions is poorly understood. The objective was to evaluate effects of cosmetic and other camouflage interventions on appearance-related outcomes, general psychological outcomes and adverse effects for adults with visible appearance differences.DesignSystematic review.Data sourcesMEDLINE (Ovid), EMBASE (Ovid), PsycINFO (Ovid) CINAHL and Cochrane Central databases searched from inception to 24 October 2020. Two reviewers independently reviewed titles and abstracts and full texts.Eligibility criteriaRandomised controlled trials in any language on non-surgical cosmetic or other camouflage interventions that reported appearance-related outcomes, general psychological outcomes or adverse effects for adults with visible appearance differences.Data extraction and synthesisTwo reviewers independently extracted data, assessed intervention reporting using the Template for Intervention Description and Replication checklist, and assessed risk of bias using the Cochrane risk of bias tool. Outcomes included appearance-related outcomes, general psychological outcomes (eg, depression, anxiety) and adverse effects.ResultsOne head-to-head trial and five trials with waiting list or routine care comparators were included. All had unclear or high risk of bias in at least five of seven domains. Effect sizes could not be determined for most outcomes due to poor reporting. Between-group statistically significant differences were not reported for any appearance-related outcomes and for only 5 of 25 (20%) other psychological outcomes. Given heterogeneity of populations and interventions, poor reporting and high risk of bias, quantitative synthesis was not possible.ConclusionsConclusions about effectiveness of non-surgical cosmetic or other camouflage interventions could not be drawn. Well-designed and conducted trials are needed. Without such evidence, clinicians or other qualified individuals should engage with patients interested in cosmetic interventions in shared decision making, outlining potential benefits and harms, and the lack of evidence to inform decisions.Prospero registration numberCRD42018103421.

Dataset Information

"Will You Still Feel Beautiful When You Find Out You Are Different?": Parents' Experiences, Reflections, and Appearance-Focused Conversations About Their Child's Visible Difference.

Publications

"Will You Still Feel Beautiful When You Find Out You Are Different?": Parents' Experiences, Reflections, and Appearance-Focused Conversations About Their Child's Visible Difference.

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