Sickle Cell Anaemia and my conference experience: discomfort, cultural competency and health literacy

I was moved to write this blog owing to an experience I had when recently attending one of our national EP conferences.

This blog has two purposes. Firstly to reflect on the disappointment I experienced at that conference, and secondly to discuss the specific needs of children with sickle cell anaemia and the professional implications for EPs.

What gets attention?

I’m a dual qualified Educational Psychologist & Family Therapist. I have recently moved into an NHS job as the Speciality Lead for the psychological provision for paediatric Sickle Cell Anaemia (SCA). The main communities affected by SCA are of African, Caribbean, Asian, Middle Eastern and Mediterranean backgrounds. SCA significantly impacts both physical and psychosocial health, and overall quality of life.

In preparing for the conference I was excited about the possibility of presenting something ‘different’, knowing there is a lack of knowledge in the EP field on this topic. Contextually, in the 38 years of the Educational Psychology in Practice (EPIP) journal, fewer than 10 articles have discussed health conditions. Often, professional articles concerning black children tend to focus on school expulsion and those articles are few and far between.

Since the murder of George Floyd, the world of UK Educational Psychology began to ‘notice’ the systemic racism that is overt, covert and entrenched in Britain. The BPS DECP (2023) ‘Self- Assessment Framework for Promoting Racial Equity in Educational Psychology Services’ publication suggests there is much to do concerning how to address systemic racism within the profession and psychologists’ responses to Black and Minoritised Ethnic communities.

​​I’m writing about this because of the very low attendance at my seminar “Examining the psychosocial effects of Sickle Cell Anemia on children and families“, and why I think there was very limited interest in this area.

The conference was an uncomfortable revelation that EPs like ‘fads’ and for me this was evident in what I saw to be a disappointing lack of interest in this deadly health condition.

The world’s most common genetic disorder.

I couldn’t help but wonder; is such limited interested in this health condition connected to the fact that Sickle Cell Anaemia only affects a specific group of people? Perhaps this condition, these young people, their experiences and needs were/are irrelevant to the majority white EPs in attendance at the conference.

In working within the NHS, the MDT team I am a part of are cognisant of the worrying evidence of deep racial inequality in the healthcare system. This was evidenced in the inquiry process that contributed to the No One’s Listening Report. Patients often reported being treated with disrespect, not being believed or listened to, and not being treated as a priority by healthcare professionals even during cases where urgent medical care was needed.

Of equal concern was that course directors and course tutors were at this conference, with only one course director and one BME tutor joining the seminar. HCPC registration requires that EPs are aware of health conditions and this would apply at the initial training level.

I think this naturally raises concerns about an inability to connect health literacy to familiar EP work themes of absenteeism, academic performance, school belonging and mental health concerns. These four strands impact any child with a health condition.

Larson et al (2022) describe health literacy as ‘the ability to access, understand…use information…to promote and maintain good health and wellbeing’. The relevance for EPs is that many children have recognised health conditions which impact their access and school belonging. Health literacy is also underpinned by a number of the HCPC Proficiency Standards (2023).

Implications for professional practice

Children and young people with Sickle Cell Anaemia are at risk of:

Silent and overt stroke:

Significant periods of hospitalisation, and general cognitive impact of a brain injury, impact academic achievement and psychosocial development. Studies suggest that silent stroke impacts Full Scale, Verbal, and Performance IQ; attention; and executive function (Wang et al, 2001).

Acute Chest Syndrome/respiratory illness:

Illness can raise the risk of hospitalisation and, in rare cases, death. School settings increase the risk of infection and, in the case of CYP with sickle cell, their immune system has a degree of being compromised. EPs as consultants to schools have a role in helping schools to understand the breadth of SCA needs.

Ongoing experience of chronic pain and pain crises:

Sickling of the blood in veins, arteries, and capillaries leads to excruciating pain. This can sometimes be remedied with home-based medication, or, in the worst case, hospitalisation occurs. Schools have a duty to be responsive to ongoing chronic pain.

Childhood disruption and the impact on the social development:

EPs can support students’ needs via consultation and attachment/relational approaches.

With children having significant periods off school due to hospital appointments and/or hospitalisation, they often miss the social elements of school, or parents are anxious about their child’s wellbeing away from the family home in case a ‘crisis’ occurs. This also contributes to a child not experiencing the life of a ‘normal child’. Sadly the implication is in the attempt to feel normal, wanting to engage with their social world, treatment adherence and so adjustment difficulties can occur.

Mental health conditions, owing to the impact of a long-term health condition:

Depression (Jerrell et al, 2011), adjustment difficulties (Barlow et al, 2006), and health related anxieties (Sil et al, 2021) are common experiences. All can be supported via in-school support e.g. ELSA.

Space does not permit further details on SCA, but an awareness of it being a systemic disorder impacting every organ in the body cannot be ignored. In a small number of cases, children will need support via an EHCP. In the majority of cases, their needs can be addressed through a SEND Support Plan.

Having moved away from Local Government, I understand that traded services limit EP work and the overflow of requests for Education Health and Care Needs Assessments (EHCNA) increases pressure to meet deadlines. Perhaps these factors limit the space to consider one’s professional practice, level of curiosity through self-reflexivity, prejudices, cultural competency and overall conscious-incompetence/competence (Luft & Ingram, 2015) when we come into contact with this unique client group.

Some cynics might suggest that, as this problem affects a specific group, there is a willing ignorance, in spite of it being the world’s most common genetic condition.

The question is…what would it take for EPs to engage with health conditions for this population?

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References and further reading

Barlow J. H., Ellard D. R. (2006) in Sil, S., Woodward, K.E., Johnson, Y, L., Dampier, C., Cohen, L.L. (2021) ‘Parental Psychosocial Distress in Pediatric Sickle Cell Disease & Chronic Pain’, Journal of Pediatric Psychology, 46(5), 557-569.

Bronfenbrenner, U (1979) In: Antony, E. M.A (2022) ‘Framing Childhood Resilience through Bronfenbrenner’s Ecological Systems Theory: A discussion paper’, Cambridge Educational Research, 9, pp. 244-257.

HCPC Standards of Proficiency (2023) In: https://www.hcpc-uk.org/standards/standards-of-proficiency/practitioner-psychologists/

Jerrell et al, (2011) in Sehlo, M.G., & Kamfar, H.Z (2015), ‘Depression and Quality of Life in Children with Sickle Cell Disease: The Effect of Social Support’, BMC Psychiatry, 15 (78)

Larson, M. H., et al (2022) ‘A bit of everything’: Health literacy intervention in chronic conditions – a systematic review, Journal of Patient Education Counselling, 105 (10), pp. 2999-3016.See: https://www.sciencedirect.com/science/article/pii/S0738399122002488?via%3Dihub

Luft. J., & Ingram, H. (2015) ‘The Johari Window’, In: https://www.communicationtheory.org/the-johari-window-model/

Sil, S., Woodward, K.E., Johnson, Y, L., Dampier, C., Cohen, L.L. (2021) ‘Parental Psychosocial Distress in Pediatric Sickle Cell Disease & Chronic Pain’, Journal of Pediatric Psychology, 46(5), 557-569.

Wang, W., Enos, L., Gallagher, D., Thompson, R., Guarini, L., Vichinsky, E., et al., (2001) Berkelhammer et al, (2007) ‘Neurocognitive Sequelae of Pediatric Sickle Cell Disease: A Review of the Literature’, Child Neuropsychology, 13(2), 120-131

Sickle Cell Society ‘No One’s Listening – A Report’ (2021)  https://www.sicklecellsociety.org/no-ones-listening/

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