Stories of experiences of care for growth hormone deficiency: the CRESCERE project

Abstract

Aims:Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy.Methods:Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions.Results:Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues.Conclusion:Narratives found that communication issues could decrease adherence and influence the physicians’ clinical practice.

Identifying Potentially Modifiable Factors Associated with Treatment Non-Adherence in Paediatric Growth Hormone Deficiency: A Systematic Review

“…Patterns of self-reported reasons for non-adherence to rhGH treatment amongst these studies centred around: anxiety and fear about the needle or the pain associated with administering the injection [43-45], the lack of confidence/skill of the person administering the injection [43], ineffectiveness of treatment [43, 45], the lack of freedom to choose the injection device [44], treatment interference issues, i.e., overnight sleepovers or travel activities [43], and poor HCP/patient communication [43, 45]. …”

What Potentially Modifiable Factors are Associated With Treatment Nonadherence in Pediatric Growth Hormone Deficiency? A Quantitative Study

“…Given the overall implications of non-adherence on GHD patients and their families, healthcare professionals and the health care system, it is evident that treatment nonadherence is an important health issue, that warrants further attention [4,8,[25][26]. In view of the findings from the systematic review [10] and surrounding rhGH literature [1][2][3][4][5][11][12][13][27][28][29][30][31][32][33][34], the key objectives of the current study were to: determine the prevalence rate of nonadherence to rhGH treatment in paediatric GHD, examine the contribution of parental illness beliefs, treatment beliefs and the perceived HCP-parent/caregiver relationship on treatment adherence and in doing so, identify the potentially modifiable factors associated with nonadherence to rhGH treatment.…”

The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

“…NM is considered informative since integrating all the perspectives involved in the care pathway helps to reveal common issues as well as possible interventions or solutions about experiencing a condition [9,[11][12][13]. The parallel chart and the illness plot represent the main NM tools, respectively dedicated to healthcare professionals and to patients and caregivers [14,15].…”