Mothers' Experiences of Caring for Children Receiving Growth Hormone Treatment

Abstract

Purpose: To achieve understanding of the meanings of mothers' experiences of caring for children receiving growth hormone treatment (GHT).

Background: Children generally begin GHT at a very early age which means parents have significant responsibilities and often endure a complex and difficult pathway with GHT.

Design and methods: Hermeneutic interpretive phenomenology based on the approach of Gadamer that adhered to the consolidated criteria for reporting qualitative research (COREQ) guidelines. See Supplementary File 1. Data collected through interviews and diaries with mothers (n = 16).

Results: Mothers' experiences were framed by three concepts: uncertainty, normalisation and stigma. These concepts were used to elaborate on the four major meanings encapsulating their experience of caring for their children receiving GHT: (1) "It's the right thing to do" (Striving for the security and the wellbeing of the child), (2) "Doubting yourself constantly" (Constant uncertainty), (3) "But then you just get used to it I suppose" (Adhering to GHT and lifestyle changes - the new normal), (4) "I hadn't been told anything about it" (Information behaviour; looking for normality and certainty).

Conclusion: Mothers experienced significant challenges coping with the uncertainties associated with GHT and needed more information and support. The felt stigma of restricted growth, rare medical condition and GHT appeared to hinder some mothers from seeking support.

Practice implications: Healthcare professionals and policy makers need to ensure that services for children receiving GHT include the necessary continuous practical and emotional support for parents along the treatment journey.

Keywords: Experiences; Growth hormone therapy; Growth hormone treatment; Mothers; Perceptions; Phenomenology.