The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

Abstract

The purpose of this phenomenologic study was to describe the lived experiences of seven mothers who were providing home-based care for their children with feeding and/or swallowing difficulties. Data were collected using semistructured interviews and were analysed as per Colaizzi's method of inductive reduction. Results suggest that the mothers' experiences can be understood as two continuing journeys that were not mutually exclusive. The first, "Deconstruction: A journey of loss and disempowerment," comprised three essences: (1) losing the mother dream, (2) everything changes: living life on the margins, and (3) disempowered: from mother to onlooker. The second journey was "Reconstruction: Getting through the brokenness" with the essences of (4) letting go of the dream and valuing the real, (5) self-empowered: becoming the enabler, (6) facilitating the journey, and (7) the continuing journey: negotiating balance. The phenomenon of being the mother of a child with chronic feeding and/or swallowing difficulties continued to be a transformative experience in which personal growth emerged along with chronic sorrow and periodic resurgence of struggle and loss. Implications call for healthcare professionals to incorporate maternal meanings and needs in providing appropriate family-focused intervention.

Experience of chronic sorrow in mothers of children with cancer: A phenomenological study

“…In one study on caregivers of primary school children with sickle-cell anemia, the parents explained that after the initial crisis of the disease, they had to face the fact that they should have tried to continue living with the disease and grown in the course of the disease (Northington, 2000). Other studies also have reported the growth and maturity in mothers in the course of the chronic disease of their child (Heidarzadeh et al, 2014;Hewetson and Singh, 2009). Maturity is considered one of the consequences of hardships in the Persian culture, as revealed in Persian literature and verse, often mentioned or referred to as a mercy/blessing of Allah, as Sa'di says in his poems:" when the illiterate came to complain about adversity, someone from deep inside the prison said "hold your tongue, be grateful that you are not in here with us, and are free to wander around".…”

Impact of Children’s Feeding/Swallowing Problems: Validation of a New Caregiver Instrument

“…Affected children are at increased risk for aspiration-induced lung injury, sequelae associated with malnutrition, and stressful interactions with their caregivers [1, 4–9]. Understanding the concerns of caregivers has not kept pace with the recent medical advances, which have improved the ability to identify dysphagia in children and manage the associated respiratory and nutrition consequences [6, 7, 10, 11]. …”

Assessing children’s swallowing: parent and professional perceptions

“…Access to information about dysphagia is not always provided in an accessible or timely way, and consultations with healthcare practitioners are not always felt to be supportive in relation to sustaining oral feeding for as long as possible (Hewetson & Singh, 2009;Peterson et al, 2006;Sleigh, 2005). Issues linked to parents' confidence, identity and feelings of loss and disempowerment in managing their own child's nutritional intake are described in the literature following professional intervention (Hewetson & Singh, 2009;Sleigh, 2005).…”

“…Issues linked to parents' confidence, identity and feelings of loss and disempowerment in managing their own child's nutritional intake are described in the literature following professional intervention (Hewetson & Singh, 2009;Sleigh, 2005).…”