Family-centred communication: A pillar for better health outcomes for children with cerebral palsy

Abstract

Cerebral palsy (CP) is a lifelong condition that is prevalent in 1.6 per 1000 live births in high-income countries and is estimated to be 3.2 per 1000 live births in low to middle-income regions.¹ Perinatal aetiologies include very preterm birth and hypoxic–ischemic encephalopathy; babies with these conditions require closer neurodevelopmental monitoring. CP is typically diagnosed at around 12 months of age, at which time a referral for targeted intervention will be made. In 2017, an international expert consensus established that CP can be accurately predicted as early as before 5 months using a combination of three tools: the Hammersmith Infant Neurological Examination (HINE), the General Movement Assessment (GMA) and neuroimaging.² Early diagnosis of CP is critical: meta-analyses have shown that targeted interventions initiated prior to 6–12 months of age improve motor and cognitive functions at a time of greater brain plasticity and reduce rates of secondary complications due to earlier anticipation of these problems.³ For families, delaying diagnosis is associated with depression and lasting anger.⁴ Diagnosis confirmation allows families to connect with support services in the community, including other parents with similar lived experience, which is central to caregiver physical and psychological wellbeing.⁵

Fundamental to making an earlier diagnosis of a neurological condition that will have a significant and lasting impact on the child's and family's journey is a compassionate, honest and empathetic approach to communication of clinical findings. Receiving a diagnosis of CP can be a traumatic and devastating experience for parents. A family-centred approach to communication is essential to reduce parental distress and foster satisfaction with healthcare.⁴ Previous reports indicated that 62% of parents expressed satisfaction with the disclosure process, suggesting room for improvement.⁶

In their article, Church et al. provide an overview of the utility of the HINE and GMA in diagnosing CP or high probability of CP in the setting of neonatal follow-up programs.⁷ Most importantly, they summarise the existing literature, albeit still scarce, on communication of a CP diagnosis. Their review centres around five main themes.

First, timing, or what we could refer as the ‘when’: diagnosis and communication should occur as early as possible, including conveying the possibility of a CP diagnosis, even if confirmation can only be done at a later timepoint. The fear of disturbing parent–child bonding by disclosing an early diagnosis of CP is not supported by evidence. Parents want to reduce the wait-and-see period between their own suspicion that their baby is developing differently and getting into intervention therapy. Second, setting and people, or the ‘where’ and ‘with whom’: the disclosure process should occur in a quiet and private place, ensuring that both parents can be present with their infant, or a support person for single parents. Third, the content, or the ‘what’: health care professionals should address parental concerns along with preferences regarding the amount of information to receive. Clinical findings should be reviewed and explained in relation to neonatal history and imaging, if available. Parents want to know what CP means and does not mean, or if the diagnosis has not been confirmed, what developmental milestones to look for. Parents want information on what to expect in the future and what interventions are available. All this content needs to be embedded into objective, value-neutral language (i.e. avoiding terms such as ‘risk’ or ‘severe’). Alleviating parental guilt is also crucial. Fourth, the approach, or the ‘how’: parents advocate for a caring, hopeful, yet honest approach that highlights what the child can do and will be able to do. Receiving news of a diagnosis is overwhelming. Communication should be clear, specific and jargon-free. Clinicians should redirect the focus from deficits to strength, embracing the ‘F-words’ of childhood neurodisability: fitness, functioning, friends, family, fun and future.⁸ Finally, follow-up and resources, or the ‘what else’: ongoing support by therapists, who will pursue intervention, social workers or psychologists, who can address parental emotional needs, and referral to community resources including parent-support group should be offered. Providing families with written material that includes references for evidence-based resources as well as contact information to ask further questions is strongly encouraged.

Now, how do we bring this into clinic? Best practices on how to deliver important news exist, the most common reference being the SPIKES protocol, derived from the oncology field and adapted for neurodevelopmental disabilities.⁹ The protocol has six steps, which encompass the main themes discussed by Church et al. (1) Setting up the encounter, which means preparing the content to deliver using a balanced approach that will highlight the child's challenges along with strengths and attributes, and preparing the environment; (2) eliciting and understanding family's Perception on what they understand so far of their child's health and development, what are their expectations and hopes; (3) obtaining the family's Invitation to respond to their request for information; in situation of grief and fear, some families may prefer less information with a stepwise approach; (4) providing Knowledge and information; (5) acknowledging parents' Emotions in an Empathetic way and (6) working on a Strategy (or treatment plan, that integrates parents' priorities and promotes the F-words) and Summarising the visit. These steps are at the core of family-centred communication, allowing for a holistic understanding of the child and family and for building partnership.

Training clinicians in family-centred communication is a priority as it improves parent satisfaction and child health outcomes. Developing the interpersonal skills that will help clinicians respond to the family's needs for adequate information and for emotional support should start at the trainee level and be pursued through continuing medical education. Indeed, particularly in difficult situations, such as disclosing a diagnosis of CP, physicians report discomfort and family dissatisfaction if communication lacks respect and empathy.¹⁰ The medical education literature recommends specific training strategies that should be high-intensity (as opposed to brief) and multi-modal, including a didactic component, to introduce key concepts, interactive discussions around case scenarios and role-playing with feedback.¹⁰ Whereas clinicians may perceive family-centred communication as being time-consuming, with practice, efficiency most likely improves as clinicians become better at asking the right questions and responding clearly to real concerns. Most importantly, for families, the way a diagnosis is shared and the first words used to describe that diagnosis are imprinted in memories (in a good or bad way) and significantly influence how parents will cope and adapt. Therefore, it is essential for the medical community to commit to high-quality teaching and training in communication skills, placing it on par with acquiring scientific knowledge. Although Church et al. provide their recommendations in the setting of neonatal follow-up visits, these are also applicable right from the start in the neonatal intensive care unit when discussing the possibility of a CP diagnosis following a significant cerebral bleed or a hypoxic–ischemic injury, as examples. Unfortunately, these conversations often occur in a distressing setting by clinicians who may have their own biases regarding neurodevelopmental disabilities and a lack of knowledge of what living with CP means on a daily basis.

Moving forward, developing a training curriculum to effectively teach family-centred communication around discussion of a neurodevelopmental condition is necessary. This curriculum should not only target paediatricians and developmental-behavioural specialists but also health care professionals involved during the antenatal and post-natal period when perinatal complications occur. The work of Church et al. lays the ground for the main themes to consider in the early diagnosis of CP, the communication process and the partnership building. Because research on disclosing a neurodevelopmental diagnosis is highly skewed towards westernised and privileged populations, future studies should explore parental needs in relation to various ethnic, cultural and linguistic identities. Achieving equity in access to services and interventions for children with cerebral palsy requires that healthcare providers acknowledge differences in cultural beliefs and experiences, and work collaboratively with families, without prior assumptions, to ensure optimal outcomes.