Negotiating Access to Health and Wellbeing Support in Schools for Young People with Chronic Health Conditions in English Secondary Schools: A Qualitative Multi-Informant Study

Lauren Herlitz; Matthew Jay; Claire Powell; Ruth Gilbert; Ruth Blackburn

doi:10.5334/cie.149

Figures & Tables

Table 1

Participant inclusion criteria.

TYPE OF PARTICIPANT	INCLUSION CRITERIA
Young people	Aged 16–25 years Had one or more chronic health condition(s) while at secondary school. Attended a mainstream secondary school in England.
Caregivers	Cared for a young person aged 11–25 years. Young person had one or more chronic health condition(s) while at secondary school. Young person attended a mainstream secondary school in England.
School staff	Worked in a mainstream secondary school in England. Had one of the following roles: Teaching or supporting students in the classroom, e.g., classroom teacher, teaching assistant, SENCO, without a leadership role. A school leader with responsibility for writing school policies, e.g., head of year, head of department, deputy head, headteacher. Educational psychologist

Table 2

Description of Candidacy Theory, adapted from Dixon-Woods et al (2006).

CANDIDACY FEATURE	DESCRIPTION OF FEATURE
Identification of candidacy	Whether/how young people or caregivers recognise a health condition as needing support from school.
Navigation of services	Young people and caregivers’ awareness of the support available and how to get it put in place.
Permeability of services	The ease with which young people and caregivers can use support services, e.g., whether referrals are required, whether there are waiting lists.
Appearing at services	Whether young people and caregivers can clearly explain their/their child’s needs and appear credible.
Adjudication by educators and other professionals	How professional judgements about a child’s needs affect their access to support.
Offers of, resistance to, services	Whether young people or caregivers resist offers of support.
Operating conditions and local production of candidacy	Aspects of the school setting that affect interactions between educators, caregivers, and pupils with health needs.

Table 3

Young people and caregiver demographic characteristics.

DEMOGRAPHIC CHARACTERISTICS		YOUNG PEOPLEN (%)	CAREGIVERN (%)
Gender	Female	6 (75)	12 (92)
	Male	2 (25)	1 (8)
	No response	4 (33)	20 (61)
	Total	12 (100)	33 (100)
Age	16–18 years	5 (42)	n/a
	19–25 years	7 (58)	n/a
	26–35 years	n/a	0 (0)
	36–45 years	n/a	7 (22)
	46–55 years	n/a	20 (63)
	56–65 years	n/a	5 (16)
	No response	n/a	1 (3)
	Total	12 (100)	33 (100)
Ethnicity	White British	8 (67)	24 (73)
	White European or Other	1 (8)	4 (12)
	Black British, Caribbean, or African	0 (0)	2 (6)
	Asian or Asian British	2 (17)	0 (0)
	Mixed or multiple ethnic group	0 (0)	0 (0)
	Other ethnic group	0 (0)	1 (3)
	Prefer not to say	1 (8)	2 (6)
	Total	12 (100)	33 (100)
Location	North England	1 (8)	6 (19)
	Yorkshire and the Humber	4 (33)	6 (19)
	Midlands	1 (8)	4 (13)
	East of England	1 (8)	2 (6)
	London	1 (8)	7 (22)
	South England	4 (33)	7 (22)
	No response	n/a	1 (3)
	Total	12 (100)	33 (100)
Presence of Individual Health Plan	Yes	9 (82)	17 (52)
	No	2 (18)	16 (48)
	No response	1 (8)	n/a
	Total	12 (100)	33 (100)
Presence of Special Educational	Yes	7 (58)	18 (52)
	No	5 (42)	16 (48)
	No response	n/a	1 (3)
	Total	12 (100)	33 (100)
Number of conditions	Single condition	4 (33)	11 (33)
	Two conditions	4 (33)	9 (27)
	Three conditions	2 (17)	5 (15)
	Four or more conditions	2 (17)	8 (24)
	Total	12 (100)	33 (100)

Table 4

School staff demographic characteristics.

DEMOGRAPHIC CHARACTERISTICS		SCHOOL STAFFN (%)
Gender	Female	16 (89)
	Male	2 (11)
	Total	18 (100)
Age	19–25 years	1 (6)
	26 to 35 years	4 (22)
	36 to 45 years	5 (28)
	46–55 years	6 (33)
	56–65 years	2 (11)
	Total	18 (100)
Ethnicity	White British	15 (83)
	White European or Other	1 (6)
	Black British, Caribbean, or African	0 (0)
	Asian or Asian British	1 (6)
	Mixed or multiple ethnic group	1 (6)
	Other ethnic group	0 (0)
	Prefer not to say	0 (0)
	Total	18 (100)
Location	North England	0 (0)
	Yorkshire and the Humber	0 (0)
	Midlands	6 (33)
	East of England	3 (17)
	London	0 (0)
	South England	9 (50)
	Total	18 (100)
Role in school	Staff teaching or supporting students	6 (33)
	Staff with a leadership role	10 (56)
	Educational psychologist	2 (11)
	Total	18 (100)
Length of time teaching	Under 3 years	0 (0)
	3–5 years	2 (11)
	6–9 years	4 (22)
	10 years or more	12 (67)
	Total	18 (100)
Size of school population	Less than 500 students	5 (29)
	500 to 899 students	2 (12)
	900 to 1199 students	3 (18)
	1200 or more students	7 (41)
	No response	1 (6)
	Total	18 (100)

Table 5

Key themes of views and experiences of accessing health and wellbeing support.

Theme 1	Navigating What Support is Available: “Being asked what would help to be told it can’t be done”
Theme 2	The Permeability of Health and Wellbeing Support: “You don’t know what is happening and you feel unable… to make direct contact”
Theme 3	The Adjudication of Health and Wellbeing Support by Staff: “I wish that school had listened to me”
Theme 4	Aspects of the School Setting and Institutional Context were Barriers to High Quality Support: “The whole system is based on minimising the inconvenience, rather than embracing their differences” Sub-themes: Pressures on Staff Time and School Resources: “Teaching staff having no time to get to know and understand my son” Providing Flexible Learning versus National Measures of Attainment: “The balance between supporting the condition and pupil and allowing the other pupils to be able to learn uninterrupted” Attendance Targets and How Attendance Policies are Communicated: “The awful attendance awards which they can never achieve”

Table 6

Participants’ perspectives on navigating different types of health and wellbeing support.

TYPE OF SUPPORT	KEY FINDINGS
Healthcare plans	Several staff, caregivers and one young person positively described accessing healthcare plans as a mechanism for considering a child’s need holistically and enhancing communication between relevant parties. Many caregivers reported difficulties they had accessing an EHCP: knowing their rights in being able to apply for an EHCP or the criteria for getting one knowing how to communicate with the local authority, particularly for rarer conditions/those harder to diagnose finding that professionals did not know how to write letters that effectively communicated pupil’s needs
Reasonable adjustments	Participants reported many kinds of adjustments to prevent pupils from being at a disadvantage compared with their peers (see appendix 5). The most often reported were exam support and adjustments to help manage the duration of the school day (e.g., access to a pastoral room for respite, or having a bespoke or reduced timetable). Several caregivers and young people reported desired adjustments that they had not received, but which other participants had been given (e.g., a bespoke timetable, flexibility on staying seated in class, exam support).
Support from staff within the school	Many participants recounted support from a particular staff member, often the SENCO or pastoral team, but also from Heads of Year, teaching assistants, the school nurse, teachers, and mental health leads. The nature of the support varied, including: acting as a key worker with oversight of a pupil’s care providing additional tuition or classroom support providing emotional support referring to other services helping a pupil to access exam support or an EHCP Many caregivers and some staff and young people highlighted the limited nature of support: lack of a key worker low availability of teaching assistants or school nurses a need for more mental health support in school insufficient whole-school support
Support from health professionals external to the school	Several caregivers and staff, and a young person reported receiving help from condition-specific health professionals who liaised with school (e.g., asthma nurse) or from a local authority medical needs team. Two caregivers noted that they would have liked easier contact with medical professionals within the school setting.
Access to education outside of mainstream school	Several caregivers and staff reported that pupils had transitioned to and from mainstream school to other forms of provision as their health status had changed. For some caregivers, alternative provision was paid for by the local authority, while others had funded private tuition themselves when there appeared to be no other option. Several caregivers had wished that they had been given information about alternatives to state and private schools, concerned that mainstream schooling had worsened their child’s health.