How do families with a child with Cerebral Palsy experience diagnosis
Research type
Research Study
Full title
How do families with a child with Cerebral Palsy experience diagnosis and adapt to the first five years of life: An interpretative phenomenological analysis of mothers perspectives.
IRAS ID
251051
Contact name
Tina Greene
Contact email
Sponsor organisation
British Psychological Society, Awards and Qualifications. Dr Russell Hurn is my qualification leader
Duration of Study in the UK
0 years, 10 months, 25 days
Research summary
‘It is estimated that 1 in 400 babies born in the UK have a type of Cerebral Palsy. Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of Cerebral Palsy in children each year’
Cerebral Palsy.org.uk
As can be seen from these statistics, Cerebral Palsy may become part of a large proportion of families’ lives each year however there seems very little research, especially in counselling psychology literature, that has considered the meaning of what is often an unexpected diagnosis or has considered how individual families experience this life changing diagnosis. By considering what this diagnosis means for families and how they then make meanings to enable adaption to changing family life, it may be possible to offer support to assist families with the high levels of stress (Pousada et al., 2013; Lowes, Clark, & Noritz, 2016; Wang & Jong, 2004) regularly reported.
To investigate this in more detail it is important to consider what Cerebral Palsy is and what the condition generally consists of. The term Cerebral Palsy was coined to describe a number of conditions that are caused before, during or briefly after birth linked to injury to the brain. Injury may result from restricted or interrupted oxygen supply to the brain, a bleed within the infant’s brain, an early or challenging birth process, infection to the mother during pregnancy or genetic changes affecting brain growth. Difficulties that then arise consist of poor co-ordination, muscle control and tone, reflexes, posture and balance difficulties, developmental delay and seizures (Cerebral Palsy, 2017). The extent and amount of difficulties may be different for each person.
The purpose of this research will be to explore the psychological experiences and meanings made by families during the period of diagnosis and the first five years thereafter. This period of the first five years of life has been chosen as this was seen as one of the critical adjustment periods which families may go through. Additionally, the transition from caring for a small baby to a larger child who by 5yrs old would developmentally be expected to be mobile and starting to gain some independence, may also have required families to make a number of adaptions in the physical, educational, social and economical areas of their lives, which may significantly impact their experiences. This was therefore deemed as important to investigate and possibly central to how families go on to make sense of their experiences. The findings of this research may be beneficial for practitioners in providing them with a detailed account of the experience of Cerebral Palsy for the families involved, providing information regarding the requirement of psychological support / psychoeducation and finally providing information on when support may have been most appropriate, if required.
My personal interest in the research comes from receiving a diagnosis of Cerebral Palsy for my daughter. We found that there was no psychological support offered, very little psycho education about the condition and very little understanding in society to facilitate adjustment to the unexpected direction for family life and the continuous challenges we faced. These included challenges in social interaction and societal reactions, economic challenges with the high cost of specific equipment, life long parenting and dependence, changes in roles within the family and difficulties with access and inclusion in regard to wheelchair use, to name a few. My reasons for carrying out this research are to help practitioners to understand the challenges for these families, to investigate the important differences and similarities and give families who are currently unheard in counselling psychology literature, a voice and opportunity to speak to those who could make a difference in providing and understanding the requirement for psychological support.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
19/SC/0177
Date of REC Opinion
11 May 2020
REC opinion
Further Information Favourable Opinion