Table 4 Sub-themes and themes present within each narrative typology
Subtheme | Theme | Narrative typology |
|---|---|---|
Feeling inundated by the demands of caring for a child with complex medical needs | Overwhelmed caregivers | Chaos |
Experiencing emotional and physical strain due to caregiving responsibilities | Overwhelmed caregivers | Chaos |
Managing the financial burden associated with medical expenses | Overwhelmed caregivers | Chaos |
Coping with disruptions to daily routines and family dynamics | Overwhelmed caregivers | Chaos |
Navigating a disjointed healthcare system with numerous providers and services | Fragmented healthcare system | Chaos |
Dealing with administrative hurdles and delays in obtaining necessary services and supports | Fragmented healthcare system | Chaos |
Experiencing gaps in continuity of care and communication between different healthcare providers | Fragmented healthcare system | Chaos |
Struggling to access specialised care and resources due to geographical or financial barriers | Fragmented healthcare system | Chaos |
Struggling to obtain accurate and timely information about the child’s condition and treatment options | Lack of information and communication | Chaos |
Experiencing breakdowns in communication between healthcare providers and caregivers | Lack of information and communication | Chaos |
Feeling overwhelmed by the volume of medical information and terminology | Lack of information and communication | Chaos |
Coping with feelings of grief, guilt, and anxiety related to the child’s illness | Emotional toll on families | Chaos |
Managing the emotional impact of witnessing the child’s suffering and medical procedures | Emotional toll on families | Chaos |
Balancing the needs of the sick child with those of other family members | Emotional toll on families | Chaos |
Navigating complex family dynamics and relationships under stress | Emotional toll on families | Chaos |
Juggling multiple caregiving responsibilities, including medical, emotional, and logistical tasks | Role overload | Chaos |
Struggling to balance caregiving duties with other responsibilities, such as work, household chores, and caring for other family members | Role overload | Chaos |
Experiencing feelings of inadequacy and guilt for not being able to meet all of their child’s needs | Role overload | Chaos |
Living with the uncertainty of their child’s prognosis and future health outcomes | Uncertainty and fear | Chaos |
Coping with the fear of medical complications, hospitalisations, and unexpected emergencies | Uncertainty and fear | Chaos |
Facing anxiety and worry about the long-term implications of their child’s condition on their family’s life | Uncertainty and fear | Chaos |
Empowering caregivers to advocate for the child’s needs within the healthcare system | Advocacy and empowerment | Quest |
Providing caregivers with the tools and resources to navigate complex healthcare processes | Advocacy and empowerment | Quest |
Fostering partnerships between caregivers and healthcare providers to ensure the child’s voice is heard | Advocacy and empowerment | Quest |
Fostering collaborative relationships between caregivers and healthcare professionals | Collaboration with Healthcare Providers | Quest |
Engaging in open and transparent communication with healthcare providers | Collaboration with Healthcare Providers | Quest |
Participating in shared decision-making processes regarding the child’s care | Collaboration with Healthcare Providers | Quest |
Working together to develop comprehensive care plans tailored to the child’s unique needs | Collaboration with Healthcare Providers | Quest |
Negotiating with healthcare providers to access necessary services and supports | Negotiation and persistence | Quest |
Advocating for the child’s needs in challenging or resistant healthcare environments | Negotiation and persistence | Quest |
Seeking alternative solutions and pathways when traditional approaches prove ineffective | Innovation and creativity | Quest |
Harnessing technology to enhance communication and coordination of care | Innovation and creativity | Quest |
Celebrating milestones and successes in the child’s care journey | Sense of achievement and fulfilment | Quest |
Finding purpose and meaning in the caregiving role | Sense of achievement and fulfilment | Quest |
Recognising and appreciating personal growth and development through caregiving experiences | Sense of achievement and fulfilment | Quest |
Adapting to adversity and bouncing back from setbacks | Building resilience | Quest |
Cultivating a positive mindset and outlook on the future | Building resilience | Quest |
Seeking support and resources to enhance resilience and well-being | Building resilience | Quest |
Establishing trusting relationships | Establishing trusting relationships | Equilibrium |
Fostering a supportive and inclusive care environment where all voices are valued | Establishing trusting relationships | Equilibrium |
Advocating for policies and practices that prioritise patient and family-centred care | Establishing trusting relationships | Equilibrium |
Clarifying the roles and responsibilities of each member of the caregiving team | Clarity in roles and responsibilities | Equilibrium |
Promoting accountability and transparency in decision-making processes | Clarity in roles and responsibilities | Equilibrium |
Creating mechanisms for feedback and continuous quality improvement | Clarity in roles and responsibilities | Equilibrium |
Accessing comprehensive support services to address the child’s medical, emotional, and social needs | Holistic support systems | Equilibrium |
Engaging with community resources and support networks to enhance overall well-being | Holistic support systems | Equilibrium |
Promoting resilience and self-efficacy in caregivers through education and empowerment programs | Holistic support systems | Equilibrium |
Advocating for policies and funding to expand access to holistic support services for families of children with complex medical needs | Holistic support systems | Equilibrium |
Adapting to changes in the child’s healthcare needs and treatment plans | Flexibility and adaptability | Equilibrium |
Advocating for flexible work arrangements and financial supports to accommodate caregivers’ changing circumstances | Flexibility and adaptability | Equilibrium |
Respecting the expertise and preferences of all stakeholders | Shared decision-making | Equilibrium |
Engaging in open and transparent communication to explore treatment options and make informed choices | Shared decision-making | Equilibrium |
Promoting a partnership-based approach to care planning and management | Shared decision-making | Equilibrium |
Ensuring consistent access to healthcare services and supports | Continuity and stability | Equilibrium |
Facilitating seamless transitions between care settings and providers | Continuity and stability | Equilibrium |
Minimising disruptions to the child’s care plan and routines | Continuity and stability | Equilibrium |
Promoting stability in the caregiving environment to enhance the child’s well-being | Continuity and stability | Equilibrium |
Prioritising caregivers’ own physical and emotional well-being | Self-care and well-being | Equilibrium |
Seeking support and resources to cope with the stresses of caregiving | Self-care and well-being | Equilibrium |
Promoting a culture of self-care and mutual support within caregiving communities | Self-care and well-being | Equilibrium |