Family Focused Interventions - What happens when we bolster family resilience?

By Bridget Smyth Head of Children and Youth Services Brain Injury Matters (BIM) NI

Acquired brain injury (ABI) is a complex condition, with injuries varying widely in terms of origin, severity and longer-term impact. The challenges children and their families face after sustaining an ABI have been the subject of international debate over the last 15 years. Many children will be left with no physical indication of their injury, but are at risk of experiencing difficulties in terms of their thinking, their functioning in activities of daily living and emotional experiences.

It is not uncommon for these issues to only become apparent after returning to everyday life at home or school. Importantly, as the brain is still developing throughout childhood and adolescence, the impact of an injury sustained at this time may not be known for a number of years. In addition, numerous studies demonstrate that children following an ABI are at risk of underachieving in education, developing mental health and mood difficulties and are disproportionately represented in the juvenile (and adult) justice populations.

THE IMPACT OF ABI GOES BEYOND THAT

The impact of ABI goes beyond that of the child and can adversely affect families. Living with a child with ABI, or the ‘invisible disability’ as it is commonly referred to, places enormous stress on the family and, if not managed or supported, can tear family units apart.

There is consistent evidence that suggests that healthcare professionals focus on the medical aspects of recovery, rather than taking a holistic, family-centred approach to care. Often upon discharge from hospital families have described a realisation that the family must now go-it-alone, which often creates a sense of abandonment and anxiety amongst families.

They have given my child coping mechanisms which will benefit him throughout his life

PARENT OF ABI SURVIVOR

Studies have shown parents to experience post-injury depression, guilt and anxiety which is not entirely surprising given the unpredictable nature of ABI for families. Furthermore, some families in the wake of ABI can experience deteriorations in their socio-economic standing due to having to change or quit jobs to care for their child and the financial burdens this incurs.

Equally research has indicated that for young people whose brother or sister has an ABI, poorer quality of life may result for these siblings in comparison to peers. A Northern Irish sibling controlled study conducted by Jebb and Colleagues (2012) that examined the behavioural outcomes of childhood ABI, reported that siblings of children with ABI demonstrated more deficits than reference norms on teacher reportedbehavioural and social measures of adjustment.

FAMILY FOCUSED INTERVENTIONS

Studies conducted in NI and internationally have demonstrated that interventions that promote family functioning and the capacity to meet the changing needs of the injured child over time have better outcomes for children with ABI. Family functioning, which includes family cohesion, good communication, and better coping resources, have been found to be reliable predictors for positive child and family outcomes post injury. (McCusker et al 2012, McCrudden, Fitzpatrick, Allen & Absolutely perfect service, Kirby, 2018). very helpful for understanding my In Northern Ireland there are no specific regional or HSC Trust wide child’s condition community services for children PARENT OF ABI SURVIVOR with ABI, nor specific statutory services designed to holistically meet the needs of children with ABI. This prompted BIM to establish a specialist service to work with families to support and empower them to meet the challenges of parenting their child (0-18) with an ABI.

FAMILY FIRST SERVICE

The Family First Service has a Family Focused Approach working with all the family, to intervene early with children and young people to support long term outcomes, and hopefully prevent these from escalating. The service works regionally in Northern Ireland and is funded by The National CONCLUSION Lottery Community Fund and delivered in partnership with The independent evaluation also highlighted that Family The Department of Psychological Services BHSCT. Family First had a positive impact on the service landscape for First is a multi-disciplinary team, consisting of a wide variety children with ABI. From thematic analysis of referrer feedback of professional backgrounds including Speech and Language, there emerged the themes of “filling a gap” and “enhancing Psychology, Social Work, Nursing and Play Therapy. capacity of statutory services”. This suggests that intervening

Family First offers a bespoke service and interventions are at the environmental level with these families enhances the tailored to meet the family needs specific to their child’s ABI. capacity of other professionals to understand and work with Interventions are evidence-based and evidence informed children with ABI. Overall the evaluation has highlighted how and often draw on existing literature and research in the bolstering family resilience can support long-term positive fields of brain injury, trauma, mental health, play, and sensory outcomes for children with ABI. integration. Furthermore, the interventions do not ignore the wider systems surrounding a child, and therefore are delivered in a family-focused way, teaching parents problem- McCusker, C.G., Doherty, N., Molloy, B., Rooney, N., Mulholland, C., Sands, solving skills to empower them to generate solutions and A., Craig, B., Stewart, M. & Casey, F. (2012) A randomized controlled trial of interventions to promote adjustment in children with congenital heart advocate for their child’s needs. disease entering school and their families. Journal of Paediatric Psychology,

The Family First Service places particular emphasis on Advance Access, 1-15. engaging with not only the child’s immediate family, but also extended family, school and educational professionals and Fitzpatrick, M. McCrudden, E.& Kirby, K (2018) A Pilot Investigation of a health care professionals to support the wider environmental Parenting Intervention for Parents and Children with Neurodevelopmental Disorders (NDD), Child Care in Practice, DOI: context. This is particularly important as it has been argued 10.1080/13575279.2018.1446906 To link to this article: https://doi.org/10.10 that family functioning and environmental influences are the 80/13575279.2018.1446906 greatest predictor of long-term outcomes in childhood ABI. For that reason, Family First considers child-related factors McCusker, Quinn C., Smyth, B. & McCrudden, E. (2020) The Family First such as age at injury, pre-morbid functioning, and severity Project Piloting a New Family Focused Intervention Service for Children with Acquired Brain Injury in Northern Ireland. Brain Injury Matters of injury and location of injury, in the context of family and Service Evaluation Report. environmental factors.

IMPACT OF FAMILY FIRST SERVICE

Key findings from an independent service evaluation conducted by Consultant Clinical Psychologist Dr Chris McCusker in 2020 indicated that approximately half of the children referred to Family First had sustained a Traumatic Brain Injury, but there was also a wide variety of other mechanisms such as childhood stroke, tumours, infections such as meningitis or encephalitis, or hypoxic events. Most children also fell into the ‘moderate’ neurodisability range based on the Kings Outcome Scale of Childhood Head Injury. These are children and families who, because they do not have a “severe” disability, can sometimes fall below the threshold for specialist neurology and other disability services.

In relation to child specific factors, the evaluation found that the children referred to the service were generally in the clinically significant range with respect to elevated behavioural difficulties and compromised social and academic competencies (data collected from the Child Behaviour Checklist). Following Family First intervention, these children displayed a reduction in these difficulties across time and showed a statistically significant increase in child competencies. Similarly, in terms of psychological adjustment, children involved with the Family First Service did not perceive themselves as having any psychological difficulties, and often scored themselves within the ‘normal’ range in standardised measures. Nevertheless, these children displayed an increase in self-concept, and a decrease in psychological difficulties following Family First intervention. Specifically, these children showed a statistically significant decrease in anger and disruptive behaviour.

For further information, please contact Bridget Smyth – Head of Children and Youth Services Email: bridget@braininjurymatters.org.uk Website: https://braininjurymatters.org.uk/