Striving to Live a Normal Life: A Review of Children and Young People’s Experience of Feeling Different when Living with a Long Term Condition

Lambert, Veronica; Keogh, Deborah

doi:10.1016/j.pedn.2014.09.016

Cited by 81 publications

(82 citation statements)

References 47 publications

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“…The synthesis presents an up-to-date systematic review of qualitative studies which have explored children's experiences of, and involvement in, managing Type 1 diabetes. In keeping with the findings of earlier reviews [9,46], it has highlighted how children's desire to appear normal can result in them making alterations to their diabetes regimens. However, new insights emerging from the synthesis, arising from the more extensive number of qualitative studies now available, include ways in which adherence to diabetes regimens can also allow children to maintain a sense of normality, and how friendships can both enable and constrain their attempts to appear normal.…”

Section: Discussionsupporting

confidence: 63%

Children's experiences of managing Type 1 diabetes in everyday life: a thematic synthesis of qualitative studies

et al. 2017

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Although the synthesis has identified how children's everyday life experiences inform ways in which they undertake diabetes self-management, it was not possible to determine new ways to provide support. To help children optimise their glycaemic control, further work should be undertaken to identify their need for support and which takes into account the potential ways in which parents, friends and peers can offer assistance.

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Section: Discussionsupporting

confidence: 63%

Children's experiences of managing Type 1 diabetes in everyday life: a thematic synthesis of qualitative studies

et al. 2017

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“…As the youth matured, the complexity of expressions may reflect ability to display inner emotions through drawing (15). Unlike previous findings (17,22), drawings were not always consistent with developmental age as some older participants drawings were simplistic. This may have been the result of limited engagement, reflection of emotional attitude, or personal concerns regarding drawing with crayons as an activity for younger children (15,17).…”

Section: Discussioncontrasting

confidence: 99%

The “Face” of Diabetes

Elertson

Liesch

Babler

2016

Journal of Patient Experience

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Objective:The purpose of this descriptive pilot study was to assess the ability of youth to create a meaningful drawing related to living with type 1 diabetes and explore the benefits of expressing emotion through drawing in future interventional work.Methods:Youth aged 4 to 19 years (N = 242) with type I diabetes attending routine follow-up appointments within a pediatric specialty clinic were asked to draw: “If diabetes had a face what would it look like?”Results:Drawings reflected many emotions and ranged from simple to complex in detail. Drawings reflected multiple experiences of living with diabetes including emotions, tools used for management, and effects of self-care.Conclusions:Youth were able to create drawings reflecting their experience of living with diabetes. Youth conveyed a variety of emotions, attitudes, and experiences in drawing the “face” of diabetes. Drawing during clinic visits provides opportunity to explore the unspoken experiences of living with a chronic health condition, which may not be obtained during routine clinical information gathering. Deeper understanding of patient’s lived experience may assist providers in therapeutic management.

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“…While protective parenting practices served to promote child safety, they could also lead to reduced autonomy in early adulthood [15,50] stemming from increased parental attachment behaviour [51] and leading to emerging adults being averse to assuming adult responsibilities [52]. Young people have also expressed frustration at the over-involvement of parents post healthcare transition [53,54]. Parents therefore appear to be more concerned than their children about the adolescent's ability to be autonomous [35,55].…”

Section: Discussionmentioning

confidence: 99%

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Heath

Farré

Shaw

2017

Patient Education and Counseling

168

116

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Highlights Parents view young person progression to self-care as an incremental process.  Parent perceptions of child readiness and wellness impact on healthcare autonomy.  Parents are concerned about a lack of transitional healthcare.  Parents can adjust their behaviour to support their child's independence.  Healthcare professionals can support parents to facilitate adolescent autonomy. AbstractObjective: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods: Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised. Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child's progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence. Conclusion: Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice

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Striving to Live a Normal Life: A Review of Children and Young People’s Experience of Feeling Different when Living with a Long Term Condition

Cited by 81 publications

References 47 publications

Children's experiences of managing Type 1 diabetes in everyday life: a thematic synthesis of qualitative studies

Children's experiences of managing Type 1 diabetes in everyday life: a thematic synthesis of qualitative studies

The “Face” of Diabetes

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

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