Mitigating and minimising at-home illness-related stress of well-siblings through school support

Family responsibilities

Well-siblings face challenges that are characteristically different from those faced by parents. Routines are often interrupted and they miss ordinary everyday experiences. They can often be by a hospital bedside or in waiting rooms instead of being in school or out with friends. Healthy siblings may share care of a brother or sister and face a relationship based more on caregiving than companionship (Taylor et al., 2008), which may result in social unavailability according to Le and Fitzpatrick (2018). This in turn, according to Kuo et al. (2017), impinges on friendships, adding to fear, anxiety, anger, isolation, shame, and guilt. They go on to add that the increased attention on the ill-child precipitates an environment of jealousy and envy (Kuo et al., 2017) and lower psychosocial and physical functioning (Kaleda et al., 2022). Hanvey et al. (2022) report siblings feeling invisible, having difficulties because they internalise roles and life conditions, with feelings of guilt and self-blame. The Department of Education and Communities of New South Wales (DEC NSW) had a resource paper Being a carer, being a student, being a kid ¹ that seems to be no longer available but recognises that, as a consequence of increased stresses associated with these roles, if a sibling is a carer (primary or vicarious), as most are, they are at risk.

School implications

Well-siblings report being isolated at school with peers being unsupportive (Vanderwerp, 2011), a lack of social interactions outside of school and lost friendships. This loss of friendships is blamed largely on the well-siblings’ reduced social availability (Le & Fitzpatrick, 2018; Meriska et al., 2018). Psychological distress and unmet needs among the adolescent and young adult (secondary school student) populations result from decreased social connections (Sambuco et al., 2012). Siblings with unmet social and emotional needs experience a host of emotional problems (Long et al., 2018) ranging from low self-esteem to increased withdrawal, isolation, lack of involvement, lack of understanding, clinical levels of distress, and internalised behaviour problems (Hanvey et al., 2022; Kuo et al., 2017). This may manifest as increasing disinterest in school activities, poorer school functioning (Verté et al., 2006), diminished academic competence, social acceptance, and global self-worth (Sambuco et al., 2012). The negative impacts of the well-sibling experience can be long-lasting and difficult to overcome (Porteous et al., 2018). Well-siblings have been described as the invisible patient (Franklin et al., 2018) and the sibling experience as the ‘Well-Sibling Syndrome’ (Brown, 2007; Wolfson, 2007).

The need for support

Negative impacts, however, are not necessarily inevitable (Alderfer & Hodges, 2010) as some siblings do react positively (Knecht et al., 2015) especially when given the right support (Kaleda et al., 2022). Support is a predictor of better mental health outcomes helping to minimise and mitigate the effects of stress and promote coping. Without support, well-siblings continue to be at risk.

Social support is described as the support available through connectedness to people: individuals, groups, or a community and as the network of people who are available in times of need, to provide physical, emotional, and financial help (Ozbay et al., 2007). This is both a valuable mediator and moderator, intervening to break the stress cycle, buffer the stress effect, and decrease its intensity. This affords the opportunity to learn and practice appropriate responses, thereby promoting resilience (Alderfer & Hodges, 2010; Gerhardt et al., 2015).

According to Pulimeno et al. (2020), schools are important settings for support and play a fundamental role in developing preventive resilient attitudes and behaviours, which enhance coping mechanisms (Niesel & Griebel, 2005). A child’s sense of self-worth and self-concept, ability to manage stress in a healthy manner, and psychosocial and cognitive domains are developed through in-school programs (Prince-Embury et al., 2016). Teachers facilitate, encourage, and nurture peer relationships and friendships which in turn foster social development (Pavri & Monda-Amaya, 2001). Educational interventions have demonstrated an ability to decrease overall anxiety and can be critical in promoting positive long-term outcomes (McKenzie Smith, Pinto Pereira, Chan, Rose, & Shafran, 2018). What siblings require is positive experiences at school, which according to the NSW DEC (2015, 2012) encourage and foster resilience through clear rules and structures and high expectations and constructive feedback. School is, according to Bronfenbrenner (1979), the ‘second line’ of social support – second to the immediate family. Families depend on school to help children. It is a place to forget the stresses of home; a place where children can be like their peers; a sanctuary and a place to make friends (Lamb & Holley-Boen, 2016).

The routine and normalcy of school and schoolwork are a great buffer, as is the company of friends, peers, and teachers (Lamb & Holley-Boen, 2016). Since other forms of support such as extended family, friends, sports clubs, and religious organisations among others are not integral to all families, children, or cultures, school is most likely to be the one constant for well-siblings. Consequently, at-school support can be a remedy (Pulimeno et al., 2020) for and replace lost normalcy.

Education policy

The Alice Springs (Mparntwe) Education Declaration (the Declaration) (Education Council, 2019), having built on past declarations signed in Hobart, Adelaide, and Melbourne, is a national commitment to the values and goals of education. Every State and Territory that is a signatory to this declaration is held accountable to deliver on this commitment. While there is no state-based specific policy that mandates and directs support for well-siblings, The wellbeing framework (DEC NSW, 2015), the ‘Every Student, Every School’ initiative derived from the Learning and support framework (DEC, 2012), and the previously mentioned resource Being a carer, being a student, being a kid have social support principles embedded in them and are designed to be inclusive of and accommodate support for every child.

This study positioned the education system (school) as the vehicle of best fit for ensuring sibling support, given that school is the one place where a comprehensive service is provided so that every child would be assured individual support.

Bronfenbrenner’s theory focuses on a child’s ecological context and the complex relationships within and around it. It explains the significance of the interplay between context, relationships (processes), and the family on a child’s development. His Ecological model of human development (1979–2005) serves as the base platform on which well-sibling development can be explained and understood. Bronfenbrenner’s theory supports the idea that a child’s identity is embedded within the person-context and is critical in influencing perceptions of situational stresses, support, and effectiveness of support. It enables an explanation of the negative outcomes on well-sibling development and underscores the value of social support as the mediator and moderator which influence positive long-term outcomes. Bronfenbrenner’s theory upholds the rationale that school, as a second-order entity, is a powerful vector to reclaim a child’s disrupted human development. Bronfenbrenner’s theory is pivotal in exploring and understanding the well-sibling experience and supports the methods of data analysis.

Rationale

The well-sibling experience is a social phenomenon. It requires a social research perspective to establish truths and realities in relation to lived experiences, the reasons for these experiences, and how they could be different (Blaikie & Priest, 2019). The reality of the well-sibling phenomenon can only be understood through the interpretations of those who live it (Blaikie & Priest, 2019). Well-siblings’ realities are a complex construct of their individual perceptions that are deeply attached to and associated with their brother’s or sister’s illness and all the resulting reciprocal relational complexities.

Understanding the reality of the well-sibling phenomenon within its context is imperative to determine the effectiveness of educational support. This was reviewed in light of the research question: ‘To what extent do practices (policies, procedures and programs) of the NSW Department of Education (DoE) provide support for siblings of children with a chronic health condition, as perceived by them (well-siblings) and their parents?’

The case study

A case study methodology was employed with a multi-case study or quintain approach (Stake, 2006), focussed on a shared phenomenon. Despite this, stress-impacts cannot be assumed to be similar, nor can the moderators used to mitigate stress. Consequently, the social support afforded each sibling must be appropriate for individual recipients. Each sibling’s perception of support was thus crucial as it afforded a value judgment about the effectiveness of support received from school. Similarly, how parents perceived the support afforded was also crucial, as was the account of teachers and principals of the well-sibling, about its delivery. Each of the six cases thus comprised the well-sibling(s), one parent (of the well-sibling as well as the ill sibling; no stepparents), and a school support officer (teacher and/or school principal). One case included interviews with a second school support officer, as the well-sibling transitioned between primary and secondary school during the course of the study. One case included two well-siblings. Teachers and principals were selected based on initial interviews with the family (snowball sampling). Since there is a direct relationship between the illness, additional roles and responsibilities, and increased stress (Meriska et al., 2018) a small sample size of six cases with a comprehensive coverage of prognostic factors: low risk (lifelong and life limiting), medium risk (life threatening and under surveillance), high risk (completed treatment but under surveillance and/or disability causing), relapse, very high risk (of failing therapy and under surveillance), and no more treatment options left (hopeless and eventual death), was deemed sufficient. Coincidentally, each of the ill-children (whose well-sibling and parent and teacher formed the case unit) was male. Table 1 details the demographics of the sample of well-siblings. Five cases comprised one well-sibling, a parent, and the school support person and one had an additional well-sibling. All ill-children were either still on treatment or under surveillance.

OPEN IN VIEWER

Table 1.

Demographics of the Sample of Well-Siblings.

Well sibling	Number of children in the family	Birth order	Age	Year level at school	Time since ill child’s diagnosis	Duration/chronicity of the illness of ill sibling
1	2	2	17	11	>8 years	Lifelong, life limiting, low risk, ongoing treatment
2	2	1	18	12	>6 years	Life threatening, medium risk, had disease recurrence, under surveillance
3	2	2	7	2	>3 years	High risk, completed treatment, in remission, under surveillance
4	3	1	13	8	2 years	High risk, disability causing, under surveillance
5	3	2	11	6	2 years	High risk, disability causing, under surveillance
6	4	3	12	6	>5 years	Very high risk, 2 relapses, transplant, in remission, under surveillance
7	2	1	15	9	>5 years	Very high risk, 3 relapses, 2 transplants, eventual death

Participants – The case study units

Well-siblings’ lived realities are complex. These realities are subjective, so this multi-case study collected data through structured and semi-structured interviews based on specific Sydney Children’s Hospital Network (SCHN) ethics-approved interview schedules for siblings, parents, and teachers. The interviews were a set of phrased conversation starters to allow for natural conversational questioning and served as a scaffold to foster memory recall and keep the interview focused on targeted data collection. It encouraged conversation, offering participants opportunities to dwell on experiences, memories, and emotions affording flexibility and a chance for siblings, parents, and teachers to share their experiences openly.

A series of interviews with six parents and seven well-siblings (aged 7–18 years) were conducted at the Children’s Hospital Education Research Institute. Interviews with the eight school staff (one child had transitioned from primary to secondary school) occurred on school premises during school hours. Each interview lasted between 30 and 45 minutes and was tape recorded with permission.

Ethics applications were submitted to The University of Notre Dame Australia (Ref No: 012099S), the NSW Department of Education (SERAP, 2013233), and the Sydney Children’s Hospital Network (HREC Ref: LNR/16/SCHN9), and clearances and approvals obtained.

Data collection

Each well-sibling participant was asked to describe their sibling’s (all brothers, coincidentally) illness to create a backdrop against which all their experiences could be explained, explored, and justified. They were asked to share memories of events, people, feelings, and things that helped them and/or hurt them. They were asked about situations that empowered them and those that challenged them. There were questions that prompted them to connect emotionally with what they had lived with and through. Their memories of everyday at-school activities were explored by unpacking their experiences of support. They were asked to talk about how they felt about being at home, helping out, and taking on some of the caring responsibilities for their sick sibling. The well-siblings were encouraged to talk about how they felt at the time of their sibling’s diagnosis and compare that with how they felt about themselves at the time of the interviews. They were asked about their teachers and their friends, and if they had been included in the support planning process at school. They were asked to score the support they received at school on a scale of one to five, with one being not good and five being exceptional. Parents were asked similar questions to add to, corroborate, and describe the illness-related stresses at home, what they experienced as support from their child’s or children’s school/s, and what they thought their well-child had received as at-school support. Teachers and/or principals were asked questions to develop a deeper understanding about the support the well-sibling received at the school: what their school had done to prioritise needs; as well as the part/role/voice of the well-sibling in the planning-of-support process, teacher accountability, funding, staffing, and policies. They were asked to discuss their role in the well-sibling wellbeing and how they assessed their school’s response to the well-sibling.

Interviews were conducted by a qualified and experienced K-12 teacher who was also familiar with processes and procedures around engaging with children within the hospital. Interviews were pre-booked and coincided with hospital appointments of the ill child. Each interview was adapted to suit the age of the well child (well-sibling) and ranged between 25 and 45 minutes. These were audio recorded with permission. All parents accompanied their well child (well-sibling). After the well-sibling indicated that they were comfortable, parents left and the interview was conducted with just the interviewer and the well-sibling. Introductory conversations with the parent and well-sibling were informal and focussed purely on providing a sense of comfort. Each data collection session was transcribed and each participant was subsequently offered a chance to check their transcripts.

Data analysis

Once data for each case were collected, analysis occurred with a focus to ensure preserving participant voice. A grounded approach to data analysis was employed (see Charmaz, 2000). Each transcript was read numerous times to promote familiarity with the case. This was followed by a three-way grounded thematic analysis. Transcripts were analysed line by line and grouped into distinct ideas with allocated codes and regrouped into themes. The final result was written as a narrative from which final themes and sub-themes were derived (Huberman & Miles, 2002). These themes and sub-themes were then subjected to a cross-case comparison. This afforded a categorisation focused on form and content and explained the themes in terms of temporality, sociality, and place (Clandinin & Connelly, 2000). Second and third iterations were completed by experienced academics in the field and the final structure was reviewed by an in-house academic at the hospital to ensure content validity.

The data were analysed and interpreted through the lens of Bronfenbrenner’s theory of human development (2005) to understand the impact of family and environment on children’s development.

Theme 1: Personal aspect of coping

This theme focussed on the well-sibling’s sense of self from their perspective, corroborated by perceptions of the parent and the school’s support staff. Within this theme three sub-themes emerged: identity; roles, responsibilities, and expectations; and fears and anxieties.

Theme 2: Social aspect of coping

This theme is focussed on the sibling’s perception of self in relation to others and the value that these relationships hold in terms of mitigating stress and promoting coping. It comprises three sub-themes: understanding, comfort and reassurance, and support.

Theme 3: Instrumental aspect of coping

This theme focused on the non-human or process aspect of coping. It is systemic or process-based in nature and instrumental in guiding thinking and action. It mutually orders and is ordered by both the personal and social aspects of coping, directs planning, and justifies funding and staffing to guarantee understanding and support. It has only one sub-theme: policy.

Compensating the lost microsystem

The case of the well-sibling is often interpreted in terms of typical human development with little consideration of sympathy, empathy, and flexibility to compensate for contextual changes and challenges (Bronfenbrenner, 2005). Well-sibling identity and coping are mutually dependent (Shean, 2015), ordered by the at-home-illness versus at-school-support effect. If the reality of lived experience is considered in its entirety, the detrimental effect on development, sense of self, and identity is unmistakable and cannot be ignored (Kuo et al., 2017). The well-sibling experience is complex and not easily addressed.

The data from well-siblings indicated that with the onset of illness, there is a new order to their lives. Well-siblings, who should have been the core of their own microsystem, were ousted to make room for their ill-sibling. Through a series of role transitions, they oscillate between part-parent, part-carer, and outsider. Bypassing significant milestones of learned, tested, and practiced emotional and psychosocial development, the well-siblings were forced into responsibility well beyond their understanding and/or maturity. Prolonged separation due to treatment, including repeated and extended hospitalisations, left them physically and emotionally distanced at times and burdened with increased stress, resulting in lost confidence accompanied by low self-worth, depleted self-esteem, and self-concept, eventuating in loss of identity and loss of self to the ill-sibling.

In the case of serious and acute or chronic and prolonged illness of a child, parental loss to the ill-child is unavoidable, accompanied by the loss of the ill-sibling to hospitals and treating teams (Kuo et al., 2017; Strohm, 2017). Compensation for this loss of primary mechanisms (parents and sibling) is best sought in the next accessible context, that is, school. At-school proximations with staff and peers become stand-in or substitute primary social mechanisms and the next-best engine of development (Bronfenbrenner & Ceci, 1994). A larger number of bi-directional proximations can be negotiated and set up at school to counter the lack of spatial and temporal depth, and to form new microsystems. With the right nurturing and support, these have the potential to become strong emotional relationships (Bronfenbrenner, 1979) with increasing developmental power that can compensate the forfeited and lost.

Macrosystemic influences

Buffering situational and contextual stresses, repairing the diminished sense of self, and empowering positive identity require a policy-driven, school-based, planned, and proactive approach that includes sibling voice. Primarily political, policy has the power to determine what is done. It shapes who benefits, for what purpose, and who pays. It goes to the very heart of educational philosophy – the purpose of education (what is it for?), the focus of education (who is it for?), and who decides how it is achieved and how it is afforded (Bell & Stevenson, 2006). Current education policies, while being rightfully focused on academic, social, and emotional outcomes of children, claim to prioritise familial and cultural influences on education but, according to the findings from this research, they fail to recognise the impact of at-home illness-related stresses on life and learning. While shared policies between education and health departments around illness and/or disability support the sick child and/or the child with the disability (McCabe & Shaw, 2008), there is no policy that acknowledges and recognises the dramatic impact on well-siblings. Policies and papers such as Every student, every school (DEC NSW, 2012), the Being a carer resource, and even The Wellbeing Framework (DEC, 2015) were noted by the teachers and principals as coming close but failing to meet specific well-sibling needs. The evidence from this research points to a lack of awareness that stems from a lack of information, a failure to acknowledge and recognise, and the inability to action plans because they are not grounded in knowledge and understanding. When people do not know, the unsympathetic may get away with describing the well-sibling journey as a ‘pity party’ (Strohm, 2017). On assessing the impact of existing policies to effect coping and resilience in well-siblings, it is evident that not only is specific policy urgently needed but policy reform and/or development is, as it was considered the most influencing determinant in the support-coping dynamic, impacting all aspects of social support and coping. If policy development is to be successful, it must consider the educational context or environment, be developed within government, and have investment of and from end-users and society (Bell & Stevenson, 2006). Extending the well-sibling voice to influence policy development process is consonant with the principles of the design thinking process (Mintrom & Luetjens, 2016).

Findings highlight the gravity of these siblings’ experience. All the data pointed to the issue that, if unsupported, at-home illness-related stresses could become compounded over time and lead well-siblings to become the next patient. For most of these well-siblings, the routine and normalcy of school made it a place of respite and repair. In its social construct, this provided the power to buffer and break the stress effect and foster coping. In the absence of specific well-sibling policy, current support appears to be unreliable and inconsistent and may even be more harmful than helpful. It is time to listen to the voice of experience. It’s time to change the invisibility of the well-sibling into an opportunity for change.

Recommendations

The issue with current practice is that, as described by five of the six parents, both principals, and four teachers, it is ‘unreliable and inconsistent’. There would seem to be an urgent need for a higher level of management of the situation. Based on the dialogues with these well-siblings, their parents, and school leaders, the following are recommendations that schools could embrace (in the absence of governmental policy) if they are to effect timely and helpful stress minimisation and mitigation strategies for well-siblings of children with a chronic health condition:

• Review school policies to determine their effectiveness to meet the support needs of well-siblings.

There is also a great need for further research, from a psycho-social perspective. This will not only strengthen and validate this study but also give well-sibling research the impetus it needs to force change.

Limitations of this research

Sensitivities around the illness experience caused hesitation in some participants, delaying data collection and analysis. Emotional memory recall for some participants brought to the fore forgotten distresses that urged a rerouting of the interview process to offer comfort. Another limitation was that the sample comprised all male ill-children and only their mothers/female guardians (coincidentally). The study was limited to public schools in NSW. The cross-section of ill-child illnesses and the length of the time participants had experience with the chronic illness, therefore, comparisons may be compromised. To understand how well-siblings cope and develop over time, after the illness has passed, or years after the death of the ill-child, requires a longitudinal research perspective that wasn’t afforded in this study.