Fathers experiences of caring for a child with a chromosome abnormality and complex care needs

Abstract

Background Chromosome abnormalities commonly result in children having associated complex care needs. While a growing body of literature examines the experiences of families caring for a child with a chromosome abnormality and complex care needs, the focus has predominantly centred on mothers. This is despite international recognition of the importance of paternal involvement and the expectation that fathers share caregiving responsibilities equally. In response to this gap, the present study explores the lived experiences of fathers who care for a child with a chromosome abnormality and complex care needs, offering insight into their unique perspectives.

Aims and objectives The aim of this study was to explore the experiences of fathers caring for a child with a chromosome abnormality and their associated complex care needs. It focused on four key objectives which were: 1. To examine fathers' experiences of how their child was diagnosed; 2. To understand the impact that this diagnosis has on fathers; 3. To explore the roles and responsibilities fathers take on in caring for their child; 4. To identify the types of support available to them, as well as how these supports influence their daily lives.

Methodology This study was underpinned by a hermeneutic phenomenological approach guided by van Manen (1990). Following ethical approval, purposeful sampling was conducted through two routes (homecare providers and a range of support groups), that support families of children with a chromosome abnormality and/or complex care needs. Nine fathers participated and data were collected through both in person and online interviews via Zoom, with two participants also completing an optional journal. Data were analysed using van Manen's hermeneutic phenomenological method (van Manen, 2014a), and findings were presented through his five existential themes: lived body, lived relation, lived space, lived things, and lived time. These themes were then examined as a whole experience.

Findings Five themes emerged, each corresponding to one of van Manen's existential lifeworld's, within which 17 subthemes were identified. The first theme, "Receiving a diagnosis of a chromosome abnormality and complex care needs, and the subsequent fight for services (lived body)", captures fathers' multifaceted emotional responses to their child's diagnosis, as well as their experiences with professional support and the systemic barriers they encountered. The second theme, "The complexity of relationships (lived relation)", explores the intricacies of navigating relationships with their children, the child's mother, and extended family members such as grandparents. The third theme, "The physical and psychological space occupied by fathers (lived space)", reflects how fathers negotiate hospital admissions, the transition home, and the emotional and practical demands of complex care decision-making. The fourth theme, "The material aspects of care (lived things)", highlights the tension fathers experience in balancing employment, financial responsibilities, and the hands-on demands of caregiving. The fifth theme, "Adapting to their child's complex care needs over time (lived time)", illustrates how fathers' perspectives and coping strategies shift in response to their child's evolving needs. When each theme is examined as a whole, this study shows that fathers are important members of the caregiving team, whose experiences are dynamic and are influenced by the changing nature of their child's complex care needs, as well as by their reflections on the past, present and anticipatory future experiences.

Conclusion When a child is diagnosed with a chromosome abnormality and complex care needs, it marks the beginning of an emotional journey for fathers. Delays in both diagnostic and support services have a direct impact on them. Fathers' support needs evolve in parallel with the changing nature of their child's care requirements. Fathers highlight the shift that often occurs from intensive medical care to managing their children's behavioural and psychosocial needs. While the term complex care needs is often associated with medical complexity, this study reveals that these complexities also span health, social, and educational domains. There is a need for ongoing, responsive support for fathers in their caregiving roles. It is essential that stakeholders acknowledge the complexity of chromosome abnormalities and the impact this has on fathers.