Enhancing Treatment Adherence in Young People with Chronic Diseases

Rapoff, Michael A.; Calkins‐Smith, Ali

doi:10.1002/9781119129530.ch19

Cited by 1 publication

(3 citation statements)

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“…21,42 A much discussed and potentially maladaptive coping strategy is rationalized non-adherence. 6,[44][45][46] In the present study, young people with a chronic condition recognized that they needed treatment to reduce symptoms of their chronic condition, but sometimes the perceived psychosocial costs outweighed the medical benefits. Consequently, they did not only adapt daily life to their treatment, but also the other way around.…”

mentioning

confidence: 70%

“…In line with Rapoff and Calkins-Smith, we argue that the ultimate goal of medical care is not strict adherence to (medically speaking) the most optimal form of treatment, but improving health and quality of life. 45 Therefore, a balance needs to be found between medical benefits of treatment and an acceptable psychosocial treatment burden. 45 , 46 This requires good patient-provider communication and shared decision making to complement medical knowledge with experiential knowledge.…”

Section: Discussionmentioning

confidence: 99%

“… 45 Therefore, a balance needs to be found between medical benefits of treatment and an acceptable psychosocial treatment burden. 45 , 46 This requires good patient-provider communication and shared decision making to complement medical knowledge with experiential knowledge. 46 , 47 Insight in experienced treatment burden can help care providers and young people to tailor treatment decisions to daily live, increase adherence, and improve health and quality of life.…”

Section: Discussionmentioning

confidence: 99%

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Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

Schelven¹,

Meulen²,

Wessels³

et al. 2023

PPA

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Purpose Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people’s experiences with treatment burden and their coping strategies. Patients and Methods The body mapping method was employed, in which a life-sized outline of someone’s body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers. Results The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist. Conclusion Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.

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confidence: 70%