Adjusting to a Different Way of Parenting: The Experiences and Perspectives of Mothers Raising a Child with Cerebral Palsy in New Zealand. An Interpretative Descriptive Study

Abstract

Cerebral palsy (CP) is a neurodevelopmental condition that has widely variable physical and non-physical challenges. Children with CP have long-term care requirements that exceed that of a typical child and, therefore, are more dependent on parents and caregivers for daily assistance. CP is the most common disability worldwide; yet, there is limited qualitative research exploring the experiences of parents and caregivers both internationally and in New Zealand. This research used interpretative descriptive methodology to explore the experiences and perspectives of parents and caregivers in New Zealand raising a school age child with CP. The intention of the research is to provide insight into this topic so that key stakeholders, such as the government, policy makers, and health professionals, can understand the experience and use it to provide services, supports, and practice changes that are evidenced based.

Purposive sampling was used to recruit the 15 participants, all of whom were mothers as they were the only caregiver to respond to the call for volunteers. Semi structured one on one interviews were conducted in person or via Zoom and transcribed through a transcription application (transcribe.com). Analysis of the data revealed an overarching concept of adjusting to a different way of parenting which is made up of three themes: a difficult start, rowing upstream, and winning but not as expected.

These themes represent the parenting journey that the mothers had taken. A difficult start covers a very influential time in the mother’s life which often started with a complicated labour and led to many experiencing a rollercoaster of emotions. For many, this time in mothers’ lives had a profound effect both on their physical health and their mental health and well-being. Overwhelmingly, this difficult start required them to adjust to a different way of parenting than they had envisaged. Rowing upstream represents the work and worries mothers experienced and reflects how much harder mothers felt it was parenting their child with CP. It includes the challenges and battles they faced with schools and government supports. These variables required mothers to adjust to a different way of parenting than expected. The final theme, winning but not as expected, represents the place where mothers arrived at in their parenting journey and consists of growth through gratitude and the discovery of a warm blanket of community support. All these experiences led to mothers feeling positive about their parenting journey and that they were winning in life, just in a different way to what they had imagined and expected.

This study highlights a significant gap in qualitative disability research in New Zealand while also revealing the resilience and strength of mothers and their children as they navigate the challenges of disability. It has highlighted the inequities in the NZ health and education systems responsible for providing disability related support and care and uncovered the trauma mothers have experienced. These are important findings that both health and education professionals, policy makers, and disability support organisations should be made aware of. These research findings are intended to be shared widely to highlight the important issues that they have uncovered with a view to influence change.