With advances in neonatal, medical and surgical care there are an increasing number of infants and young children surviving with medical conditions. Many of these children have associated complex feeding difficulties as a result of the disruption to early oral feeding experiences and periods of restricted or non-oral feeding. These children are at risk of developing long-term feeding difficulties associated with sub-optimal nutrition and poor appetite regulation, delays in mastering skills that lead to eating and mealtime independence, and disruptive mealtime behaviours. Managing the extraordinary demands associated with feeding and ensuring nutrition for these children can present significant challenges for parents as well as health care professionals involved in their care. Occupational therapists are often core members of multidisciplinary teams providing hospital-based services to these children and their families. Embracing an occupation-centred perspective, participation in feeding and mealtimes are considered important co-occupations for infants, children and their parents and carers that occur within the context of parenting and family life. Understanding these contextual influences and the occupational needs of parents are essential but have been understated in the occupational therapy literature and clinical practice. This thesis describes a qualitative study using a phenomenological perspective to explore the lived experiences of parents of children with complex medical and feeding difficulties. Parents from fourteen families participated in the study. Data collection involved in-depth interviews, family mealtime observations and demographic questionnaires. Key findings indicated that parents experienced a high degree of stress in their everyday lives as a result of their children’s feeding difficulties, especially in relation to tube-feeding. Mothers’ self-image was devastated because they believed that it was their ultimate responsibility to feed and nourish their children. Differences in how parents identified with and fulfilled their parenting roles and responsibilities emerged, not just in relation to feeding but also for other childcare and domestic activities. Overwhelmingly, it was mothers who assumed the greater share of these parenting responsibilities, and in addition, expressed a sense of responsibility for preserving family unity and the need to get on with family life despite the chronic nature of their children’s problems. These findings contribute to our understanding of the occupational challenges for parents of these children, especially mothers who have a primary role in feeding, and the impact of feeding disruptions on the lives of their families. This knowledge will assist clinicians providing feeding interventions to be more sensitive and responsive to the needs of both parents and other family members. Recommendations for clinical practice are proposed. Limitations of the study are presented along with suggestions for future research.
| Identifer | oai:union.ndltd.org:ADTP/283967 |
| Creators | Lyndal Franklin |
| Source Sets | Australiasian Digital Theses Program |
| Detected Language | English |
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