Guidelines on Service Provision for Families of Children with Acquired Brain Injury (ABI): An International Perspective

 

 Authors: 

Mark A. Linden PhD

School of Nursing and Midwifery, Queen’s University Belfast, UK.

Ingela Kristiansen MD

Department of Pediatric Neurology, Uppsala University Hospital, Sweden.

 

Introduction:

Acquired brain injury (ABI) is an umbrella term which includes any injury to the brain which occurs following birth of a traumatic or disease related origin.1 The long term care which is sometimes necessary following childhood ABI can place significant strain on the family.2-4 Research has shown that this strain can lead to the development of mental health problems,5, 6 financial hardship 7 and social isolation.8 It has been demonstrated that social support moderates the psychological distress of caregivers, with its absence resulting in increased distress over time.9 Given the crucial role caregivers play in the recovery process, and long term care of their children, the provision of support would therefore seem a logical goal of healthcare providers.8 Many voluntary and statutory bodies around the world have sought to provide a means to standardise the care of children following ABI. These efforts have often resulted in the production of guidelines which can vary on a regional and international basis. 

Guidelines from Sweden, the UK, Canada and the US were reviewed to gain an international perspective on the proposed care of survivors of brain injury. Some of these countries lacked, or we were unable to locate, guidance on the care of children. In such cases the adult guidelines will be described. It is beyond the scope, nor is it the intention of this paper, to review these guidelines in their entirety. Rather we will focus on those sections of the guidelines which impact on the care of families.

In Sweden, children and adolescents suffering from ABI are treated by the public healthcare system. It is stated in law that the public health system has an obligation to provide habilitation and rehabilitation. There are local guidelines in all regional centres and in some of the counties (Kristiansen, I, Personal Communication, June 30 2013). These guidelines refer to the provision of acute care, the need for information to children and families, rehabilitation, return to school and follow-up. A working group from the Swedish Pediatric Neurology Society are currently developing guidelines for ABI in an attempt to standardise levels of care throughout Sweden. These national guidelines will be available from 2014.

The National Institute for Health and Clinical Excellence in the UK (NICE) 10 puts forward a number of priorities for implementation. These include the assessment of a patient within 15 minutes of arrival at an emergency department, CT imagining completed within 1 hour, the transfer of patients with a GCS < 8 to a neuroscience unit, and the provision of information to patients and carers on discharge. This information should make clear the possible long-term effects of traumatic brain injury (TBI) and provide contact details to services which may be of help. These guidelines highlight the importance of patient-centred care which seeks to include the patient and their carers in decision making, where possible. 

The Scottish Intercollegiate Guidelines Network (SIGN) 11makes a number of recommendations for care from initial assessment, to indications for the use of computed tomography (CT), and referral to a neurosurgical unit. Again, the importance of effective, written, discharge advice given to the parents/carers is highlighted. The SIGN guidelines go on to provide a number of points, as the result of discussion with patients, on the provision of information from the journey to hospital, through assessment and referral to discharge and on-going care in the community. Such information giving should be tailored to the stage of treatment and should be available for communication in a variety of formats to the child, carers and friends. 

The Regional Acquired Brain Injury Implementation Group in Northern Ireland 12 has published an ABI pathway for children and young people. Communication with the family is seen as central from the acute care phase, through to family support on discharge. In addition to the establishment of rehabilitation goals and the assessment of carers’ needs, the importance of effective discharge planning is highlighted. Effective communication between services and the provision of information and advice to both the child and family is seen as a core component to holistic assessment.

In Canada, the Ontario Neurotrauma Foundation (ONF) 13 have published guidelines on the assessment and treatment of mild traumatic brain injury (mTBI) and its persistent symptoms. These guidelines are predominantly involved with the medical aspect of care and make recommendations such as early diagnosis, the use of standardized assessment tools and the provision of educational materials and advice. While the role of the family is discussed they are largely seen as a supportive mechanism with little recognition given to their own needs. While these guidelines currently refer to patients > 18 years of age, the ONF is in the process of developing guidelines for mTBI in children, which should be available in 2014.

The US third edition of guidelines for the management of severe TBI 14 is primarily aimed at the acute phase of hospital care. These guidelines are appropriate for the neurological treatment and care of the patient following injury and make no mention of the family unit. We were unable to locate any guidelines which currently extend beyond the acute phase of care in the US. However, the Centre for Disease Control (CDC) is in the process of developing a set of guidelines for youths and children with mild TBI, which should be released in the Spring of 2014.

The existence of these and future guidelines should mean that care of the child and family is optimized to encourage participation and recovery. However, increasing economic pressures on healthcare providers may mean that some of these guidelines are never fully considered. 

The Family Perspective

Despite the existence of guidelines which espouse the importance of the family unit in the recovery process, families continue to feel isolated and unsupported by services.15 The long term care required for many children who sustain an ABI places significant burden on families who struggle to find the help they need.

‘Support?! Who gives us support! It’s been a battle to get any help since he was born… I couldn’t get social services to help as a single parent’ [Mother aged 51, child age 12, injured at birth, moderate ABI] 

‘Lack of consistent, worthwhile, professional help….No one actually seems to be bothered!’  [Mother aged 49, child aged 13, injured at age 5, severe TBI]

The sense of frustration that families, and particularly mothers in their role as primary caregiver, feel in caring for their child is apparent from these quotations. In addition to the everyday care of their child, mothers expressed a sense of struggle in attempting to gain the attention of professional agencies. The full-time work of caring for their child takes its toll on the mothers’ health, who rely on support from whatever source, to alleviate this burden of care.    

‘I’m not sure what the health services could have done with James after his accident but I wish someone would have tried something’ [Mother aged 45, child age 21, injured at age 13, moderate TBI].

‘It is extremely hard dealing with a head injury especially when it is your child! The job is exhausting both physically and mentally. This cocktail is lethal and without support from family and agencies such as social services, Headway and CBIT (UK based brain injury charities) it can become unbearable [Mother age unknown, child age 24, injured at age 13, severe TBI]

In the years following injury, contact with services tends to substantially decrease.7, 16 Healthcare services are focused on saving lives and addressing functional and behavioural difficulties. Once these treatment goals have been addressed the individual is unlikely to receive additional support from healthcare professionals. Few guidelines exist which suggest a route for supporting families over the long term. Any recommendations made in this regard tend to make reference to the voluntary sector. Charitable organisations shoulder the responsibility of continued support and information provision as best they can. However, the lack of professional care following the acute phase of treatment is keenly felt by families.15


Discussion

The above UK based quotations illustrate that, even in the presence of established guidelines, care of the family is often overlooked. Guidelines are often seen as exemplars of best practice and may not be entirely embraced by healthcare providers. Whether this is due to a lack of knowledge, political decision making or economic pressures the result is increased strain on the family unit.

In general, we found a lack of published guidelines on the management of paediatric brain injury. Among these, some chose to specifically target TBI whilst others selected the broader term ABI. Indeed, the introduction of Canadian and US guidelines in 2014 for mTBI shows a focus on the largest group of injuries in children. However, this focus excludes moderate to severe TBI which, whilst less numerous, often results in reduced long term outcomes. Consideration should also be given to the admittedly less well defined group of children who have a diagnosis of ABI. The majority of existing guidelines focused on acute care and discharge from hospital, with few including rehabilitation and on-going care in the community. On a positive note, several guidelines recognized the importance of information provision to the child and family on discharge from hospital and at different stages of the rehabilitation process. We would point out that information giving may not lead to understanding and it is the role of healthcare professionals to ensure that families fully understand the implications of their child’s injury. At the early stages of recovery parents may not be able to fully digest the import of what they are being told. Thus, certain guidelines suggest the need for communication with the child and family at different stages of the rehabilitation process. However, the family is still largely viewed in a support role to the child, with little consideration given to their own physical and mental health needs. There is a need for guidelines concerning the psychological, economic and social support of family members during the acute stages and in the longer term.

More effort is needed to create guidelines for the care of the child, from acute care to rehabilitation and continuous support in school and the community. There is also a need to emphasise the specific roles and needs of the family at different stages of the rehabilitation process.  Gan et al 8 suggest a number of recommendations to improve services to families. These include the implementation of a family systems model of care to include all family members; increased flexibility of services to deal with changes in family needs over time; provision of support for both future and financial planning and respite care of varying durations. To these we would suggest the establishment of an easily accessible rehabilitation service which would contain all necessary professions and could provide on-going support; review of the family’s needs on an on-going basis and monitoring of the uptake of regional and national guidelines, through the audit process, to ensure best practice is being met.

 

References

Teasdale, R., Bayona, N., Marshall, S., Cullen, N., Bayley, M., Chundamala, J., et al. (2007). A systematic review of the rehabilitation of moderate to severe acquired brain injuries. Brain Inj21, 107-112.

Armstrong, K. and Kerns, K. (2002). The assessment of parent needs following paediatric traumatic brain injury. Pediatr Rehabil5, 149-160.

Hawley, C., Ward, A., Magnay, A. and Long, J. (2003). Parental stress and burden follwoing traumatic brain injury amongst children and adolescents. Brain Inj17, 1-23.

Murray, H., Maslany, G. and Jeffery, B. (2006). Assessment of family needs following acquired brain injury in Saskatchewan. Brain Inj20, 575-585.

Kreutzer, J., Rapport, L., Marwitz, J., Harrison-Felix, C., Hart, T., Glenn, M., et al. (2009). Caregivers' well-being after traumatic brain injury: a multicenter prospective investigation. Arch Phys Med Rehabil90, 939-946.

Riley, G. (2007). Stress and depression in family carers following traumatic brain injury: the influence of beliefs about difficult behaviors. Clin Rehabil 21, 82-88.

Nabors, N., Seacat, J. and Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Inj16, 1039-1105.

Gan, C., Gargaro, J., Brandys, C., Gerber, G. and Boschen, K. (2010). Family caregivers' support needs after brain injury: a synthesis of perspectives from caregivers, programs and researchers. NeurorRehabilitation27, 5-18.

Ergh, T., Rapport, L., Coleman, R. and Hanks, R. (2002). Predictors of caregiver and family functioning following traumatic brain injury: social support moderates caregiver distress. J Head Trauma Rehabil17, 155-172.

National Institute for Health and Clinical Excellence (2007). Head Injury: Triage, assessment, investigation and early management of head injury in infants, children and adults. Clinical Guideline 56. National Institute for Health and Clinical Excellence: London, UK.

Scottish Intercollegiate Guidelines Network (2009). Early Management of Patients with a Head Injury: A national clinical guideline. SIGN: Edinburgh, UK.

Regional Acquired Brain Injury Implementation Group (2012). Acquired Brain Injury Pathway for Children and Young People Health and Social Care Board and Public Health Agency: Belfast, UK.

MTBI Guidelines Development Team (2010). Guidelines for Mild Traumatic Brain Injury and Persistent Symptoms. Ontario Neurotrauma Foundation: Toronto, ON.

Brain Trauma Foundation (2007). Guidelines for the management of severe Traumatic Brain Injury. J Neurotrauma24, S1-S106.

Jordan, J. and Linden, M. (2013). 'It's like a problem that doesn't exist': The emotional well-being of mothers carding for a child with brain injury. Brain Inj27, 1063-1072.

Gan, C. and Schuller, R. (2002). Family system outcome following brain injury: clinical and research perspectives. Brain Inj16, 311-322.

 

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