Introduction

In the UK, school non-attendance, also referred to as ‘emotionally based school avoidance,’‘school refusal’ and ‘school absenteeism,’ [1] can be defined by a student being: (a) persistently absent, missing 10% of school sessions or (b) severely absent, missing 50% of school sessions [2]. Since the Covid-19 pandemic, school absences have been one of the most difficult challenges that parents and schools have faced. Statistics from the Department of Education show that 17.79% of students persistently missed school in the 2024−25 autumn term, meaning they missed 10% or more of school [3]. Although this has decreased from 19.44% in the 2023−24 autumn term [3], the Children’s Commissioner, Rachel de Souza, still notes her concerns in the absence enquiry that one fifth of children are still persistently absent from school [4]. School attendance is important for children and young people. Beyond academic achievement, attending school is key to help facilitate social and economic outcomes, peer relationships, support mental health and wellbeing and preparation for a smooth transition into adulthood [5,6]. However, many children and young people struggle to attend school, with data showing that only 5.3% of students have an Education, Health and Care Plan (EHCP) and 14.2% require Special Educational Needs and Disabilities (SEND) support [7]. Failure to provide children and young people (particularly with a neurodiverse condition such as autism) with appropriate support can lead to an increased vulnerability to mental health issues and a risk of school non-attendance [8].

Many children and young people experience difficulties with everyday school life due to the emotional stress it can cause, which may stem from mental health concerns such as anxiety and depression or from a neurodiverse condition [9]. Having a diagnosis of autism and/or attention deficit hyperactivity disorder (ADHD) may increase the risk of school related absence [10,11]. Children with probable ADHD are more likely than neurotypical peers to have poorer attendance levels [12] and school refusal is the most reported reason for school non-attendance in children with autism [13]. Thus, children and young people with SEND may be more vulnerable to school non-attendance [10]. It is important to have effective partnerships between school staff and families and have reasonable adjustments in place for neurodivergent students who experience school non-attendance [14]. However, when this is not in place, it often leads to children leaving the education system altogether, receiving home education and/or alternative provision depending on their circumstances and needs [15].

Schools and local councils have a range of legal powers that can be used if a child or young person is missing from school without a legitimate reason. For example, parents may receive a fine for their child’s persistent absence or if they are considered not to be proactively taking steps to help their child back into school [16]. However, this harsh consequence does not consider the barriers, lack of support and resources for parents to help their children get back into the classroom before enforcing such policy. One example of this is the waiting times for mental health support. Each year more than a ¼ of a million children and young people are waiting for mental health support after being referred to Children and Adolescent Mental Health Services (CAMHS) [17], with large variations in wait times which is often related to the severity of the mental health condition [18]. In addition, the waiting times for support for neurodiverse conditions such as autism and ADHD are rapidly growing due to the large increase in the number of referrals. However, reliable statistical data is unavailable, making it difficult to understand the scale of the challenge at hand [19].

Another example is that the issuing of EHCP’s, which is not only a complex process but also comes with lengthy wait times. Some children and young people have been found to wait for more than a year for an EHCP, meaning they go a whole academic year without the vital support they need [20]. Importantly, delays in accessing an EHCP have been shown to have significant repercussions for children and young people’s mental health and wellbeing. For example, children who successfully obtain an EHCP compared to those still waiting for one, have been shown to experience less deterioration in their mental health [21]. However, the impact on parental health and wellbeing cannot be ignored. A qualitative study exploring mother’s experiences of accessing an EHCP for their autistic child, found that mothers reported the process overwhelming and difficult, and revealed a sense that the system was setting them up to fail, resulting in high levels of anxiety and hopelessness in how to help their child [22].

The current study was rooted in the Stress Process Model, developed by Pearlin [23], which provides a theoretical framework for understanding the care stressors experienced by individuals providing care for other family members. With reference to parenting, it is the extent to which the stressors of the parenting role itself (e.g., time, effort and energy) affect other aspects of their life (e.g., work, relationships, family and leisure) [24], where increased stressors can lead to poor mental health outcomes [25]. Previous research has highlighted that parents of children and young people with mental health and/or neurodiverse conditions generally have more parenting difficulties [26,27], which is associated with higher levels of caregiver burden and poor mental and physical health [28,29]. Many parents of these children are also often unable to work but may have multiple children to provide for and meet the needs of. For example, even sending one child to state school has shown to cost a minimum of £864.87 a year for a primary aged child, and £1,755.97 a year for a secondary aged child [30]. Therefore, making it increasingly difficult for parents to financially support their children in school. This is just one example where the burden of care may overspill into other aspects of parents’ lives, which in turn may have an impact on their own mental health and wellbeing. Understanding parental wellbeing is vital, not only for the parent themselves, but their children, family and wider social and societal networks [31].

Some research has explored school non-attendance, including insights into child, parental and school perspectives, plus how school non-attendance is associated with poor mental health and neurodiversity of children and young people themselves. However, there is currently no research to date that explores the experiences beyond this. Therefore, this qualitative study aims to interview parents of children who do not regularly attend school, to gain new knowledge and understanding of their experiences and their perceptions of how this has affected parental mental health, wellbeing and their lives. The research questions aim to address the following: (a) What are the experiences of parents whose children do not regularly attend school? (b) How have these experiences affected parental mental health, wellbeing and quality of life?

Materials and methods

A qualitative exploratory design was chosen to capture the voices and lived experiences of the parents in this study. Using thematic analysis enabled the researchers to explore, in depth, parents’ experiences of having children who do not regularly attend school and the impact on their own mental health and wellbeing. And, to use a reflexive approach for a detailed understanding of the codes and themes within the data [32].

The interview schedule for the qualitative interview was developed using open questions to encourage discussions around their child’s school non-attendance, the support they received and the impact this had on the wellbeing of themselves and their family to date. Parents were asked at the beginning of the interview which terminology they preferred with regards to their child’s school non-attendance, as the different terms (e.g., school refusal, school anxiety, school avoidance) tend to be used interchangeably. ‘School-absenteeism’ was generally preferred to remove the blame and choice of not attending school from the child. Therefore, this was used as per the interview schedule below but was adapted during the interviews where necessary. The questions included:

1. Can you give me a brief overview of your experiences of your child’s school absenteeism?
2. Can you tell me about the support you as a parent/carer received regarding their school absenteeism?
3. Can you describe the impact the level of support you were given as a parent/carer had on your relationship with your child and your relationship with your child’s school?
4. How did your child’s absenteeism affect life at home?
5. How did your child’s absenteeism and the process of seeking support affect you and your own mental health, and did you seek any support for yourself?
6. Are there any self-help strategies you have used to help to support your own mental wellbeing?
7. Can you describe the impact the process has had on you and your family? Any positives?
8. How do you think the process could be improved to better support parent/carer wellbeing?
9. Do you have any advice for parents/carers going through this process on how they could support their own mental health and wellbeing?

Participants

A purposive sampling method was used to recruit parents/carers of children aged 7−16 years who regularly do not attend school or had regularly not attended school in the past and were recruited using a snowball effect. Advertisements containing information about the study were shared on X, Facebook groups and with local charities and organisations (recruitment period: 22/02/2024–30/09/2024). Parents were asked to contact the lead researcher via email if they were interested in taking part.

Fourteen parents were originally contacted on a first come first served basis in response to them signing up to take part in the study. From these, 11 parents gave consent and were interviewed. Interviews lasted from 24.02–77.31 minutes (M = 47.69, SD = 15.88). The 11 parents (9 mothers and 2 fathers) were aged 33–56 years (M = 45.45, SD = 7.19) and most considered their ethnicity to be white British (n = 8) with the remaining individuals identifying as white European, Asian and Black respectively (n = 3). They were from a range of different geographical locations but all falling within the UK. Participants’ children were school non-attenders and were aged 8–15 years (M = 12.18, SD = 2.86) and their school non-attendance varied in time and frequency. Of the 11 children, 8 had an identified neurodiversity and/or mental health condition and 1 had a physical health condition. The demographics for parents and their children can be seen in Table 1.

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Table 1. Characteristics of parents and their children.

https://doi.org/10.1371/journal.pone.0333501.t001

Results

Following the thematic analysis, the interviews resulted in the following superordinate and sub-themes as seen in Fig 1 below.

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Fig 1. Superordinate themes and their sub-themes.

https://doi.org/10.1371/journal.pone.0333501.g001

Discussion

This study aimed to explore the experiences of parents whose children do not regularly attend school and identify how these experiences affected their mental health, wellbeing, and quality of life. Their experiences highlight how the burden of having a child who does not regularly attend school not only affects the child in question, but the stress and demands on parents negatively affect siblings and the wider family circle. This is particularly apparent if the child has additional needs. The results from this study found there were negative consequences for marital relationships, where a breakdown in a marriage could have negative consequences for parental mental health, contributing further to the stress they have been experiencing [34]. Being happily married is associated with better physical and mental health and promotes better wellbeing due to access to resources including both social and economic [35]. However, parents revealed that they were being spread so thin to meet the needs of all their children, let alone meet the needs of their spouses regardless of martial support. Thus, this shows support for the Process Stress Model in relation to parenting [23] where the added stress of their parenting role affects other aspects of their life [24], leading to poor mental health [25].

Parents in the current study also felt they had less time, money and energy to fulfil the needs of their other children, causing anger and frustration. Children who have siblings that have additional needs, for example, a neurodiverse condition, are often overlooked and their feelings are minimised [36]. This may have negative consequences for their self-esteem and future relationships if their parents are not able to express the same level of love and support [37]. Parents revealed a sense of worry about the longer-term impact on siblings’ health and wellbeing, adding to their already high stress levels. This demonstrates that the burden of care can have a detrimental effect on parental health and wellbeing.

Furthermore, parents of children and young people with mental health and or neurodiverse conditions generally experience more parenting difficulties [26,27], which is associated with higher levels of caregiver burden and poor mental and physical health [28,29]. Since many of the parent’s children in this study have neurodiverse and/or mental health conditions, this reinforces the negative impact beyond the child in question and shows the impact on the wider family’s health and wellbeing, when appropriate support is missing. Parent’s wellbeing and mental health play a vital role in providing the necessary care of their children [38] and also for their own life satisfaction [39], showing that these parents require better support for their own health and wellbeing, to better meet the needs of their children, and better meet their own needs.

Parents reported that the high levels of stress in their lives had a direct impact on their physical health, such as headaches, migraines, aches, pains and exacerbated current health conditions. Moreover, the lack of time for themselves meant there were less opportunities to exercise or look after themselves thus increasing risk of weight gain and related concerns. There is an association between physical health and mental health [40], whereby physical health problems can increase the likelihood of developing mental health problems and vice versa [41]. Again, these results show how the greater demands on these parents increase stress, affecting other aspects of their lives and negatively affecting their mental health and wellbeing, providing further support for the Stress Process Model [23].

Parents also highlighted the sacrifices they experienced because of their child being unable to regularly attend school. For example, many parents reported having no choice but to give up their work to care for their children. This firstly meant giving up their careers that they enjoyed and gave them purpose without knowing when they would be able to return to work. Having a career break to care for children has negative consequences for future career prospects particularly for mothers [42], which may cause future burden on parental mental health and wellbeing. Secondly, giving up work meant that parents were also dealing with the financial implications of a loss of income, which may impact their ability to be able support their child back into school. It is costly to send your child to school, and parents with a significantly reduced income and multiple children to provide for may not financially be able to support their child back into school [30]. In addition, lifestyle adjustments such as moving house and sacrificing their basic needs increases levels of stress and has negative consequences for parental health, wellbeing and quality of life for themselves and the whole family. This added pressure for parents and families in already stressful circumstances, shows that parents need additional support to be able to get their child back into school, and to increase their wellbeing.

The findings from this study are an important step into exploring the experiences of having a child who does not regularly attend school on parental mental health and wellbeing. Since the Covid-19 pandemic, school absences have been one of the most difficult challenges that parents and schools have faced. While recent figures from the Department of Education have shown a slight decrease in persistent and overall absence rates, severe absence rates have increased in primary, secondary and special schools [3]. This reveals that appropriate training and timely support is needed. The government need to prioritise mandatory teacher training for schools to: (a) provide better support for parents with a child who is unable to regularly to attend school, and (b) provide the necessary resources and support to encourage children back into the classroom. More rigorous SEND training for schools would also be beneficial to: (a) enable teachers to identify different types of SEND in the classroom, and (b) have access to early intervention to support younger children’s readiness, inclusive of sensory processing, motor and visual perceptual skills [43]. As this early support and intervention may be beneficial for keeping children in schools, reducing the care burden on parents, thus less likely to negatively affect their mental health and wellbeing. However, since these implications are real for the parents currently living through the experiences discussed, mental health support for them would be of great benefit; and to prevent a decline in their mental health and wellbeing. Government or council initiatives should be developed to support parents with their children who are unable to attend school, rather than penalise them without understanding the challenges at hand.

It is important to note some of the strengths and limitations of this study. The fact that a wide geographical location in the UK is covered by the participants is a strength, despite there being a small sample. In addition, the findings capture the voices of parents with lived experiences, and how their lives and family dynamic are affected by their child being unable to regularly attend school, who may also have additional needs such as a neurodiverse condition. Although it is recognised that a limitation of qualitative studies is their generalisability, this research still contributes to the landscape of school non-attendance. However, some factors may have influenced the generalisability of the results. The use of snowball sampling and the choice of recruitment through parent support groups, may have led to an over-representation of mothers from White British backgrounds in the sample. Future research should include wider samples of the population to understand more about the experiences of different groups (e.g., mothers vs fathers) in addition to the differences between cultures, and type of school (e.g., primary vs secondary and state vs private). Furthermore, many of the parents in the current study still had a child who was regularly missing school, and it would be important for future studies to also capture the voices of those who were now accessing some form of education, whether this be through alternate provision, home schooling or returning to school.

The findings also reveal the need to explore the longer-term impact of school non-attendance on the health and wellbeing of families affected. Research could also explore the development of the child unable to attend school and their siblings, and the role of neurodevelopmental disorders. It would also be useful to understand the economic implications with additional services being required to support the health and wellbeing needs of parents and their families.

Overall, being a parent of a child who does not regularly attend school is a challenge, both physically and mentally. The parents in this study highlight that the increased stress from parenting demands, in addition to the lack of support from schools, services and family members does negatively affect their mental health and wellbeing. Although parents have expressed that it was their job to advocate for their child and support them as best they could, the advocacy fatigue shows that parents need support themselves to combat the negative consequences it is having on them and their family. The results of this study hold real-world implications for schools, services and health professionals who could provide more personalised support for children and families to reduce the negative impact of school non-attendance. This should be prioritised for children’s overall development and parental and family health, wellbeing and quality of life.

Acknowledgments

Thank you to all of the participants who took part, and to the research team and social media groups for their assistance with recruitment for this study.