Qualitative Study Examining Attendance for Secondary School Pupils With Long-Term Physical Health Conditions

Impetus to Reduce Absenteeism

There is growing pressure on governments, schools, and practitioners to address increases in persistent absenteeism post Covid. In the United Kingdom (UK) this has led to calls for “zero percent” school absence policies and a rallying call to encourage CYP back into school as a matter of “social justice” (The Centre for Social Justice, 2023; Children’s Commissioner, 2022). Consistently attending school is considered a good way of “equalising opportunities” for all children (Benhenda, 2023), particularly because levels of absence disproportionately affect vulnerable groups, including pupils from lower socio-economic backgrounds, ethnic minorities, and those with disabilities (Kearney et al., 2022, 2023).

Tackling Absenteeism

Globally a plethora of research and policy attention over many years have been directed toward tackling absenteeism to mitigate the negative effects of not being in school. This includes research focussing on interventions to tackle different “types” of absenteeism; for instance, school refusal (where young people openly refuse to go to school as it causes them emotional distress and do not hide absence from their parents) and truancy (where young people deliberately do not attend school without the consent or knowledge of their parents) (Baskerville, 2022; Heyne & Brouwer-Borghuis, 2022).

Studies have variously examined different theoretical frameworks and approaches designed to redress low attendance. These include those positioning absence as a condition within a pupil’s control, those seeking to change pupil behaviour, foster well-being, and promote school sense of belonging, and those seeking to tackle the emotional factors contributing to school absence (Baskerville, 2022; Halligan & Cryer, 2022; Kearney et al., 2022; Kipp, 2022). On-the-ground school practices include using incentives to enhance attendance but with varied levels of success (Balu & Ehrlich, 2018) and punitive measures involving the use of discipline, exclusion, and legal interventions for attendance (Department for Education, 2022). Positive interventions for improving attendance are considered somewhat effective, whilst negative interventions adopting punitive and sanction-based methods can lead to worsening absenteeism (Kearney et al., 2022).

UK Law and Pupils With LTPHCs

In the UK parents are legally responsible for ensuring their children receive a “fulltime, suitable education” (Education Act, 1996). As such, parents are responsible for ensuring their children routinely attend and can be fined or prosecuted if they do not (Department for Education, 2015a, 2022). Schools, for their part, have a legal duty to take care of children with medical conditions (Bainham & Gilmore, 2015; Department for Education, 2013, 2015b; Children and Families Act, 2014) and acknowledge that these children may face added difficulties to attending school.

Although there is no agreed official data (Bernell & Howard, 2016; Spencer et al., 2022), there are an estimated 1–1.7 million CYP with a LTPHC in the UK (All Parliamentary Group for Diabetes, 2017; Hagell et al., 2013; Lewis & Lenehan, 2014; National Institute for Health and Care Excellence [NIHCE], 2023; Spencer et al., 2022). Using estimates based on available headcount figures for 2022/2023 (Gov UK, 2023) and the estimated figure of 1.7 million CYP in England (NIHCE, 2023), this equates to approximately 11–17% of the pupils in England living with a LTPHC (Gov UK, 2023).

CYP with LTPHCs are shown to have lower rates of attendance in school due to their condition often resulting in symptoms, side-effects and healthcare appointments (Eloi et al., 2019; Jay et al., 2023; Lum et al., 2017; Polderman et al., 2010; Spencer et al., 2023a; Suris et al., 2004). They have also been shown to have lower academic attainment than their healthy peers (Forrest et al., 2013; Knight et al., 2018), although a 2023 review questioned whether school attendance is the meditating factor in the attainment of young people with LTPHCs (Jay et al., 2023). Sense of school belonging is regarded as an important psychological need for CYP with LTPHCs (Tomberli & Ciucci, 2021). As a result, emerging discourse is highlighting the value of collaborating with CYP to better shape the resources and services designed to support them (Lea et al., 2018; Taylor et al., 2018; Van Schelven et al., 2021).

Whilst there is recognition in UK policy that CYP with LTPHCs face additional barriers to attending school, there is scant evidence on how attendance and absenteeism are experienced by and managed for CYP with LTPHCs, along with a dearth of evidence on how practices to promote attendance affect this population. Better documentation and understanding of these issues using first-hand accounts from CYP will contribute to informing existing debates on tackling absenteeism. It will also help to better understand whether practices around attendance for CYP with LTPHCs are in line with equalities legislation and educational rights and guidance (Department for Education, 2022; Education Act, 1996; Equality Act, 2010; Jay et al., 2023).

The INSCHOOL Project

The INSCHOOL project is 5-year research programme conducted in the UK between 2020 and 2025 to better understand and document the school lives of CYP with LTPHCs. To date, the project has reviewed existing research in this topic area (Spencer et al., 2022) and conducted a large-scale qualitative study with CYP across a diverse range of LTPHCs (Spencer et al., 2023a, 2023b). Using methods co-designed with CYP to collect first-hand accounts of school experiences (Spencer et al., 2023b), the qualitative project highlighted the significant unmet needs of this cohort and substantial commonalities in their school experiences regardless of their specific health condition (Spencer et al., 2023a). Data from the INSCHOOL project provide a source of rich information to explore the school attendance experiences of young people with a LTPHC.

The Present Study

This paper was based on a secondary analysis of pre-existing qualitative data obtained from the INSCHOOL project. Whilst primary research involves data collection and analysis, this secondary data analysis uses the data already collected for the INSCHOOL project but for another purpose (Carter, 2013).

This new thematic analysis of the pre-existing data aimed to explore issues relating to attendance while leveraging the rich information already gathered on the needs of pupils with LTPHCs (Spencer et al., 2023a). The analysis explored the following research questions:

1. What do secondary pupils with a LTPHC say about their experiences relating to attendance at school?

2. What do their accounts tell us about how attendance is managed and supported at school and about the impact on CYP with LTPHCs?

Participant Details

The study sample comprised 89 CYP with a LTPHC (see Table 1) recruited from one of 11 clinics in a Children’s Hospital in the North of England (asthma, allergies, chronic pain, colorectal surgery, cystic fibrosis, dermatology, diabetes, neuromuscular, oncology, rheumatology, and sickle cell anaemia). Sampled CYP ranged in age from 11–18 years and all attended mainstream secondary schools. The sample contained CYP with diversity of gender, age, and ethnicity. Sixty-six of the 89 CYP from the INSCHOOL qualitative sample had transcript extracts coded under the attendance node. Given the freedom to discuss any aspect of their school lives, three quarters specifically chose to raise issues about attendance, demonstrating that it is a notable area of concern for CYP with LTPHCs.

Design

A thematic analysis approach was adopted for this study to examine the secondary data. In the initial analysis of the qualitative data gathered for the INSCHOOL project, all information related to attendance was coded under a generic “attendance” node within NVIVO. The present study sought to examine the data coded under the “attendance” node. For detailed descriptions of the data collection methods employed to generate the primary accounts from CYP with LTPHCs, and from which our secondary data analysis was extracted, please see Spencer et al. (2023a, 2023b).

Analysis

A total of 211 extracts had been broadly coded under the “attendance node” in the original INSCHOOL project but had not been analysed further. In this secondary analysis study, a thematic approach to analysis was employed to construct the common themes present in the attendance experiences of participants (Braun & Clarke, 2006; Kelle 2007; Nowell et al., 2017). The Research Fellow (VH) followed Braun and Clarke’s recommended six stages of thematic analysis. That is, all extracts were examined thoroughly, labelled and coded, before being organised into themes and subthemes that exemplified comparable meanings (Vaismoradi et al., 2016). Emergent themes were then discussed with co-authors SP and BS, who conducted data collection for the INSCHOOL qualitative project, to provide further context and perspective to the emerging themes. To ensure the analysis remained grounded in the experiences and perspectives of CYP, and in line with the participatory approach adopted throughout the INSCHOOL project, a young adviser with lived experience of a health condition independently analysed the attendance data. The young adviser was given an overview of thematic analysis, a broad coding frame, and access to the anonymised interview extracts. The fit of the coding frame along with any concepts and experiences the young adviser saw emerging from the data were then discussed, refined, and agreed to before the thematic framework was finalised.

CYP Absence and Factors Affecting It

All participants had missed some time from school. Whilst some reported minimal absence from school, others had missed significant periods of education. Amounts of time taken off school fluctuated based on the extent of need to manage and treat the condition, including short sporadic attendance, repeat absences, or a block of time off over a sustained period.

Participants were absent from school because they were unwell, experiencing a sudden increase in symptoms or side-effects, undergoing treatment or surgery, or attending medical appointments. Several participants also described missing school because of secondary psychological effects of their condition, such as depression, anxiety, or temporary reduced cognitive functioning. For some, anxiety was increased because of concerns about returning to school after a period of sustained absence. In these cases, participants reported worrying about being subjected to unkind comments from peers because of visible signs of their condition such as rashes, weight changes, scars, hair loss, crutches, or medical devices.

The participant accounts showed that CYP were “very orientated around education” and often made sustained efforts to attend school. Health appointments were scheduled to minimise the amount of time off or to avoid missing core subjects and “important classes like English [and] maths.” CYP talked of making compromises between health and education needs when making decisions about attending school, which meant sacrificing one area for the other. Some made determined efforts to carry on with life in the same way they would if they did not have a LTPHC, at times even to the detriment of their health. Alongside their internal motivation to attend school for their own benefit, several felt “pressured” to attend school by teachers or parents. Some worried that they would be perceived as if they “didn’t care” about education. This meant going to school when they did not feel well enough. Others considered health the main priority and had accepted, or “resigned” themselves to, the necessity of time away from school.

Participants’ descriptions showed that they were largely off school for legitimate reasons such as ill health and medical appointments over which they had little control. CYP with LTPHCs wanted to go to school in most cases and were often wrestling with competing health, academic, and psychosocial issues in their decisions and ability to attend.

School Reactions and Responses to Absence

A few participants reported that their school had been supportive in how they logged and dealt with absence. However, the majority felt their schools’ approach was adversarial with regular and insistent need for justification. Some reported disparity around absence recording with inconsistency in the need for absences to be authorised with examples of schools not authorising an absence depending on the type of medical appointment CYP had.

Several participants explained they had been challenged on why they were absent and had to provide a defence or agree to change their behaviour. Some had been subjected to home visits where they and their parents were questioned about their attendance. This was rarely described as a supportive process, and participants often felt they were being compelled to attend or not believed. Some had sought support from their doctor to justify reasons for absence.

School practices for dealing with absence were regularly reported as unconstructive, stigmatising CYP with LTPHCs as troublesome. Participants also experienced negative consequences for missing parts of a school day and spoke of being given “red” marks when they were late to a lesson because of a medical appointment or late to school due to effects of their condition.

Even when participants were attending, schools adopted different stances on whether they should be included or excluded in certain lessons or permitted to attend school trips. Whilst some participants reported being “side-lined” during lessons such as PE, others were required to take part even if advice from their health practitioner had said otherwise.

Participants described how their schools deployed incentive and reward schemes for high attendance at school. Many CYP talked about “missing out” on these schemes. The practices excluded them, made them feel guilty for not being at school, or caused them to feel they had let their classmates down.

Use of incentives and reward schemes left participants feeling upset, punished, blamed, left out, and unsupported. Participants reported feeling frustrated because they could not control whether they were ill yet were still expected to be present and to contribute to attendance targets. Some participants reported being actively disciplined or cautioned for having low attendance, chastised in class for missing work, or prevented from progressing to the next phase of education.

More supportive approaches to managing attendance reportedly flexed around participants’ health condition. These included authorising absence without question, having participants back into school on phased returns, and not marking them down as late in recognition that their being late was due to their condition or adverse effects of medication.

Participant feedback showed that practical support from schools to catch up and keep up with education missed was variable and unsystematic. Often it was provided by a sympathetic individual or a supportive teacher rather than as a planned school response. There was little communication about the work participants had missed when they were off. This meant they were not aware of lesson coverage or missed notification of upcoming tests. Participants often relied on friends for information. There was little evidence of participants being offered alternative, novel, or compensatory forms of education. Participant data contained limited feedback suggesting use of online approaches, and where these were available, participants did not find them very helpful or effective.

Most participant accounts showed they felt the onus was on them to compensate for time missed and that they were responsible for catching up with work in their own time.

In sum, participants’ comments showed they felt unsupported. Keeping and catching up required extra personal effort on top of challenging health needs.

Impacts on CYP With LTPHCs

Academically, participants felt they were not fulfilling their potential, did not have equal access to education as their peers, and were missing out. They felt left behind, and that they were “not getting the same education as everybody else”. Being off school meant missing important learning, tests, or exams. Intermittent absence could mean they missed key elements of the curriculum that were built on in subsequent lessons and left participants with gaps in their knowledge. Combined with an unsystematic approach to catching up on missed work, this left participants at a clear disadvantage.

Alongside academic difficulties, physical and mental health consequences were experienced. Managing both health and education needs could be exhausting and overwhelming, with many participants describing a challenging cycle of falling behind and catching up that left them feeling physically “drained” from trying not to let “hospital life” overlap with “school life”.

Returning to school after a diagnosis, a long period of treatment, or surgery was challenging. Participants described this as impacting their mental health, with some having bouts of panic and fear about returning to school after being off.

Participants were also concerned about adverse effects on their parents because of defending their absence from school. Relationships between parents and teachers could suffer when schools compelled parents to get CYP into school when they were not feeling well enough.

Missing school impacted negatively relationships and social interaction for participants, with absences making building and maintaining friendship groups challenging. Several described how they felt friends had “moved on” while they had been away from school so they were having to start building friendships from “square one”.

Several participants had resigned themselves to the fact that their health required time away from school. They had learned to accept their health condition and had reconciled themselves to how that affected their education.

Although there are some positive aspects to this acceptance, participants often described this acceptance in terms of resignation coming from regular experiences of not being actively shown how they could still be included in school and supported to achieve their goals.

Limits of the Study

This study was based on direct accounts from CYP using a participant-led approach that prioritises first-hand experience as a valuable source of knowledge (Spencer et al., 2023a). However, the CYP’s views are limited to experiences of mainstream schools from LTPHCs across 11 clinics and, therefore, may not transfer to other educational settings or chronic health conditions. However, there was commonality in the issues raised across CYP from the 11 health clinics included in the study.

As this was a secondary analysis project, attendance was not the sole or primary focus of the data collection. As a result, there may be additional depth to attendance experiences that was not gathered in the main INSCHOOL project.

Implications for Further Research

There is a need for further research to identify, assess, and monitor the attendance of CYP with LTPHCs and to capture parental and school perspectives. More investigation to categorise and quantify educational, psychological, and social effects of the LTPHC population is required. Specifically, it is important to identify and describe what constitutes effective delivery, quality remedial action, and support around attendance for this cohort. In addition, there is an urgent need to develop protocols for delivery to ensure greater consistency and parity of opportunities across schools.