An extended literature review into the impact of chronic illness on the social functioning and emotional wellbeing of children and their healthy siblings
Chronic illness does not just impact on a child physically, but emotionally and socially as well. It also has an impact on healthy siblings.
This dissertation aims to identify how chronic illness impacts on the child and their healthy siblings’ social and emotional wellbeing.
A literature review was conducted through online databases using search terms including ‘chronic illness’, ‘psychosocial adjustment’, ‘emotional wellbeing’, ‘social wellbeing’, ‘support’, and ‘services’.
The literature obtained had conflicting results; however, it can be said that, for many children and their healthy siblings, there is a negative impact on their emotional and social wellbeing. There seems to be an increased likelihood of emotional difficulties such as depression and anxiety as well as a higher chance of social isolation and problems maintaining friendships. Children with chronic illness also seem to experience diminished self-esteem and confidence, particularly if they have a visible difference.
Group support, Cognitive Behavioural Therapy, and Social Interaction Skills Training all appear to be effective methods of support for children with chronic illness. However, the student believes further research is needed in this area and how support could be implemented as early as possible to act as a preventative measure as opposed to a reactive one.
Table of Contents
Literature Review 17
Impact of chronic illness on the child’s emotional wellbeing 17
Impact of chronic illness on the child’s social wellbeing 21
Impact of chronic illness on healthy siblings’ emotional wellbeing 26
Impact of chronic illness on healthy siblings’ social wellbeing 31
Supporting children with chronic illness and their healthy siblings 34
Conclusion and Recommendation 40
Reference List 43
In one sense, wellbeing is a simple notion; all one must do is answer the question, “Do I feel well?” However, the concept is undeniably much more complex and covers a range of other areas including mental health, relationships and friendships, and quality of life (Buchanan & Hudson, 2000).
Psychological and emotional health is defined by the World Health Organisation (2014) as “a state of wellbeing in which every individual realises his or her potential, can cope with the normal stresses of daily life, can work productively and fruitfully, and is able to make a contribution to their community”. Emotional wellbeing can be attained by understanding and caring for one’s emotions in addition to developing the emotional skills needed to effectively deal with life’s challenges (Richmond.gov.uk, 2014).
Generally, social functioning is considered to be a ‘catch-all’ which encompasses peer relationships, social competence, and social-emotional adjustment (Adams et al, 2002). One aspect of social wellbeing, social support, is used to describe the quantity and quality of relationships between families and communities (Buchanan & Hudson, 2000).
Chronic illnesses are those which cannot be cured, only controlled, and are typically life-long and limiting with regards to quality of life (NHS Wales, no date). Over fifteen million people in England have at least one long-term physical health condition, with around 11% of children and 10-13% of adolescents living with a chronic illness that limits their daily lives (NHS, 2012). These include diabetes, asthma, arthritis, inflammatory bowel disease and cancer, among others. Medicine today can effectively control pain, reduce symptoms, and limit the possibility of any long-term complications; it cannot, however, offer a cure (Eisner, 1993). Therefore, children with chronic illnesses face a lifetime of regular hospital visits, diagnostic procedures, painful and invasive treatments, and a need to adhere to treatment regimens which may include, for example, medication, injections, and blood measurements (Eiser, 1993; Christie & Khatun, 2012).
Chronic illnesses are complex and bring with them significant burden and emotional adjustment for the individual as well as their family. People with chronic illnesses will often also experience a substantial impact on their lifestyle, education, self-esteem and social network that is a result of their condition (NHS, 2012; Christie & Khatun, 2012). Children and young people living with a chronic illness are believed to be twice as likely to experience emotional or conduct disorders (NHS, 2012).
I decided to focus on the emotional and social wellbeing of children with chronic illnesses due to my sister being diagnosed with Crohn’s disease, a type of inflammatory bowel disease, in 2008 at the age of nine. While it was obvious how the condition impacted on her physically: fatigue, bloating, pain and discomfort; the impact the condition has on her emotionally and socially is less obvious and seemingly of less importance to her consultants yet is still a presence in her daily life. She is often too exhausted to go out with friends and take part in activities, side-effects of medication have made her feel very self-conscious about herself due to a rash on her feet as well as when she is bloated as she believes that people will think she is overweight. She has also had experiences of her friends complaining that she always cancels their plans and never does anything with them even though this is due to her feeling exhausted or experiencing pain and discomfort. Therefore, I wanted to investigate the impact chronic illness has on children’s social and emotional wellbeing.
As the older sister to a child with a chronic illness, I have also experienced the impact of the diagnosis. I often experience feelings of worry, stress and guilt that my sister is the one that is ill and not myself; and since I have been able to drive in particular, I have taken on greater responsibility with regards to taking my sister to hospital appointments every eight weeks for treatment. Consequently, I also wanted to investigate the impact a child’s chronic illness has on healthy siblings’ social and emotional wellbeing, especially as it seems that a lot of the time, healthy siblings are considered to be the ‘forgotten children’.
Subsequently, the aims of the dissertation are:
- How does chronic illness impact on a child or young person’s social and emotional wellbeing?
- How does chronic illness impact on healthy siblings’ social and emotional wellbeing?
- What support is in place for children with chronic illness and their healthy siblings?
Carrying out research with children can be defined as “a systematic and scientific search for information which aims to improve our knowledge of children” (Greig & Taylor, 1999, p.38). Yet, there is an increased concern regarding vulnerable groups and whether it is ethical for them to be used as participants in research (Fouka & Mantzorou, 2011). This includes children and the critically ill, both of whom were the focus of this research project (ethical considerations are discussed later). Consequently, a literature review was decided upon as the most effective method of research into the impact of chronic illness on social and emotional wellbeing, as opposed to primary research conducted by the student.
Fink (2005, as cited in Booth et al, 2012) defines a literature review as a “systematic, explicit, and reproducible method for identifying, evaluating, and synthesising the existing body of completed and recorded work produced by researchers, scholars, and practitioners” (p.1-2). Academic and peer reviewed journal articles were collected through online database searches including Ebsco, Journal of Pediatric Psychology and SAGE Publications. In order to gain results related to the topic of study, search terms such as chronic illness, social adjustment, emotional wellbeing, psychosocial adjustment, children and young people, healthy siblings, support and services were used. Information was also gathered from books, though the student had to acknowledge that many books are not peer reviewed and some of the information may have been outdated (University of Hull, no date); and government publications which can be a reliable, authoritative source of information. It must be noted that this form of research undertaken by the student is only as good as the literature available; thus it was vital for the student to use articles from peer reviewed journals due to them being reviewed by other subject experts who verify that the methodology is sound and the conclusions made are valid, as this ensures a high level of validity and rigour (Liverpool Hope University, 2016).
Quantitative research relies on the collection of results in terms of numbers and most often employs the use of statistical analysis (Greig & Taylor, 1999; Johnson & Christensen, 2008). This method of research was used in some of the studies reviewed by the student, including those by Curtis and Luby (2008); Huygen et al (2000); Verhoof et al (2014); and Devine et al (2012). These studies involved the use of questionnaires with multiple choice answers or rating scales such as the Health Related Quality of Life scale (HRQoL) and Illness Cognitions Questionnaire (ICQ) which produced numerical data or had responses that were scored into pre-specified categories. This allowed the researchers to use statistical analysis to help them draw their conclusions.
Qualitative research is concerned with unique phenomena and describes and interprets using regularly occurring themes, with the view to explaining the object of study, most commonly using written word (Greig & Taylor, 1999; Johnson & Christensen, 2008). In some of the studies reviewed, the researchers used interviews to gain a detailed insight from their participants into the impact chronic illness has on their lives both socially and emotionally (Houtzager et al, 2004; Devine et al, 2012).
Although the distinction between the quantitative and qualitative approaches is exclusive, it is most useful for the purpose of description rather than in practice as they have the ability to overlap, meaning many researchers use a combination of the two (Greig & Taylor, 1999), as this approach uses a variety of data collection and analysis techniques (Johnson & Christensen, 2008). When conducting mixed research or, in the case of this research project, when using a mixed method approach, it is vital for the researcher to consider the fundamental principle of mixed research, a guiding principle that suggests it is prudent to collect multiple sets of data using a combination of quantitative and qualitative research approaches in a way that produces an overall mixed methods research design which harnesses the strengths and compensates for the weaknesses of both approaches (Johnson & Christensen, 2008; Tariq & Woodman, 2013; Sullivan, no date). This method can be particularly useful when addressing complex, multifaceted topics such as chronic illness and health service interventions as this research project has (Tariq & Woodman, 2013).
The amalgamation of any body of literature can generally be characterised in one of two ways: aggregative or interpretive (Booth et al, 2012). In an aggregative approach, the value of bringing studies of a similar topic together is that each additional study increases the weight and quality of the finding, while an interpretive approach seeks to broaden our understanding of a topic and makes an explicit attempt to contribute to a theory either through theory generation or validation of existing theories (ibid). When analysing data from a mixed methods approach, an integrative strategy may be used in which one type of data may be transformed into another as opposed to keeping the data sets separate (Tariq & Woodman, 2013). For example, qualitative data may be changed to quantitative data through numerical coding of written word data to create variables that could relate to set themes (ibid).
There is a strong argument that any research must have a high standard of rigour which complies with issues of reliability and validity (Greig & Taylor, 1999). Generally, it is accepted that children in the middle years are able to read, write and make themselves understood, however, in terms of scientific research, they still seem to be linked with issues regarding reliability such as not being able to tell fact from fiction, and saying what they believe the researcher wants them to say (Fraser et al, 2004). Challenging this idea, Scott (2000, as cited in Fraser et al, 2004) claims that adults are just as likely as children to blur the line between fact and fiction due to truth being a personal construct; ergo, as long as children are questioned in a manner in which they understand, that is neither excluding or patronising, and are asked about events that have meaning to them, they can and do provide reliable answers (Fraser et al, 2004). However, in this research project, asking children and young people about their chronic illness and their emotional and social wellbeing could have caused them undue stress with no direct benefits to them, thus it would be unethical to conduct primary research even though they could well have provided very reliable responses. Using a mixed methods research approach can improve the quality of research because the different research approaches have different strengths and weaknesses, which helps to prevent the researcher from making mistakes (Johnson & Christensen, 2008).
There is a close relationship between law and ethics, but not everything that is legal is necessarily ethical as the law often sets out the minimum standard while ethical practice ambitions are generally higher (Fraser et al, 2004). According to Beauchamp and Childress (2001), ethics is an overarching term for the various ways of understanding and examining morality, which refers to the societal norms regarding what is right and wrong. Common morality is accepted by all morally genuine individuals, while professionals must follow a professional morality in which there are high standards of conduct that should be unquestioned (ibid). Research relies on the general public to fund, take part in, and respect research findings; subsequently, if researchers wish for this collaboration to continue, it is paramount for them to work to high ethical standards (ibid). According to The British Educational Research Association (BERA) (2011) researchers must work within an ethic of respect for anyone involved in their research, ensuring that they are treated fairly, sensitively, with dignity and respect, and free from prejudice.
Beauchamp and Childress (2001) developed a set of four moral principles which serve as a framework guideline for professional ethics. This includes autonomy, which involves consideration of an individual’s opinions, and respecting their capabilities to make an informed decision; non-maleficence, which involves the avoidance of the causation of harm; beneficence, which considers the balancing of benefits against the risks; and justice, the idea that individuals in a similar position should be treated in a similar manner so that the benefits, risks and costs are distributed fairly (Beauchamp & Childress, 2001; UKCEN, no date).
One of the most important factors involved in all ethical considerations when conducting any kind of research is the need to gain informed consent from the participants (Greig & Taylor, 1999). This involves taking every step necessary to ensure that participants know that they have a choice as to whether they participate in the research, that they have the right to withdraw at any point without coercion, that they know exactly what their role in the research will be and why their participation is necessary, and how the research will be used and to whom it will be distributed (Greig & Taylor, 1999; BERA, 2011). However, when conducting research with children, it can be difficult to know when they are competent to consent; and much depends on each individual child’s experience and confidence, the type of research being undertaken, and the skill with which researchers talk to them and help them to make an informed decision without pressuring them (Fraser et al, 2004). Article 12 of the United Nations Convention of the Rights of the Child (UNCRC) requires that children capable of forming their own opinions should be given the right to express these freely in any issues that affect them, and should therefore be facilitated to give informed consent (BERA, 2011). Though the law requires that, for any child under the age of eighteen years, parents or legal guardians must give informed consent, the child must give at minimum assent, if not informed consent (Bailey, 2007) Though the student did not conduct any primary research of her own, the researchers of all the literature reviewed in this research project will have gained informed consent from parents and carers as gatekeepers and consent from the children themselves to take part in the research so as to comply with their respective ethics boards.
According to Article 3 of the UNCRC, in all actions concerning children, the best interests of the child must be the primary consideration (BERA, 2011). Some research may present a risk to the participants. This can be defined as the “potential physical or psychological harm, discomfort or stress to participants that a research project may generate” (BPS, 2010, p.13). It is important to recognise that it can be difficult to predict potential risks at the beginning of a research project, but researchers must acknowledge that the children involved may experience distress during the research process and should therefore take every precaution to identify possible risks to reduce unnecessary intrusion and cease their actions immediately if any harm comes from the research process (BPS, 2010; BERA, 2011). Protection from harm also considers emotional harm, so researchers must ensure they are sensitive in their approach and are prepared for potential areas of distress (Fraser et al, 2004). Research should be worthwhile and provide long-term value that outweighs any short-term risk of harm (BPS, 2010; ESRC, 2015). While Beauchamp and Childress recommend that research is not undertaken if there is no direct benefit to the child, research may not be considered to be unethical if the findings could benefit future generations; though the risk would still have to be minimal and not contrary to the child’s best interests (Medical Research Council, 2004). There is a distinction in health research between therapeutic and non-therapeutic research: therapeutic research is where there will be a direct benefit to the participants relating to their treatment, whereas non-therapeutic research has no direct benefit (Greig & Taylor, 1999). Dimond (1996, as cited in Greig & Taylor, 1999) states that non-therapeutic research should only be undertaken if there is minimal risk to the child. The topic of research undertaken by the student would be considered to be non-therapeutic as there would be no direct benefit to the participants, and could cause them to feel undue stress and discomfort when discussing their emotional or social wellbeing in relation to their chronic illness, which could be considered to be more than minimal risk, thus it would be unethical to ask children to do so.
Undertaking research with children poses numerous challenges regarding informed consent, vulnerability and conflict of interest (Fernandez, 2008). The idea that children cannot be asked questions or interviewed are quite common due to the long-held opinion that children cannot add anything valid to research or that asking a child to express their views can be too distressing for them (Greig & Taylor, 1999). Nonetheless, children are the best source of information regarding issues that concern them so collecting data from them is favoured as other secondary sources are not as likely to adapt themselves to the perspective of the child (Fraser et al, 2004). Researchers should therefore, campaign for the participation of children, while guaranteeing that they are attentive to the potential risks (Fernandez, 2008). In some types of research it could be deemed necessary to question an adult on behalf of the child; most likely in the case of children who are too young or unable to speak, or in the event that the types of questions being asked are considered to be unethical if put to children (Greig & Taylor, 1999). Most of the literature reviewed by the student was of research involving children as researchers wanted to gain their personal opinions regarding their social and emotional wellbeing. Some studies also questioned parents, though this was to see the comparison between their responses and the child’s responses (including O’Brien et al, 2009 and Adams et al, 2002).
Confidentiality recognises participants’ right to privacy, and anyone undertaking any form of research must explain and agree with their participants their right to confidentiality and anonymity (Fraser et al, 2004; BERA, 2011). Research can be confidential, anonymous or neither; and one of the requirements of informed consent is ensuring that the participants are informed of their level of privacy (Bailey, 2007). Anonymous research is where the researcher is unable to identify the participants, while in confidential research the researcher knows or could know the identity of the participants but does not reveal this knowledge (ibid). Where children are competent to make their own informed decisions, the law grants them the same level of confidentiality as an adult (Fraser et al, 2004). There are two particular areas in which children’s confidentiality cannot be guaranteed: when a child discloses that they are being abused; and when a researcher identifies a condition (such as mental health difficulties or physical illness) about which the child’s parents or carers can take action (ibid). The research included in this literature review would have maintained some level of confidentiality, as in some of the studies, the researchers conducted interviews and would therefore have known the participants (for example Houtzager et al, 2004), while other studies required participants to complete questionnaires ( for example Huygen et al, 2000) which would have allowed them complete anonymity.
Impact of chronic illness on the child’s emotional wellbeing
Humans react both cognitively and emotionally to the events that occur in their lives, and these reactions affect how the events develop over time (Falvo, 2005). Grasping the immediate and long-term impact of being diagnosed with a chronic illness is complex, confusing and potentially frustrating as it has such a marked impact on all areas of life (Christie & Khatun, 2012). Children, like adults, react in very different ways to being diagnosed with a chronic illness, with some facing greater difficulties than others (Edwards & Titman, 2010). It is, however, believed that children who develop a chronic illness at a young age are better able to incorporate it into their lives as part of their self-identity than older children (Mackner et al, 2013); although Curtis and Luby (2008) would argue that depressive symptoms such as irritability, whining and crying can be witnessed in children as young as three years.
For the child, diagnosis of a chronic illness can be a source of considerable challenge which can result in feelings of shock, anger, stress and worry (Theofanidis, 2007). In some cases, children view their illness as one that will become progressively worse, leading the child to experience feelings of panic which, in turn, impacts on their ability to deal with their symptoms (ibid). Grief is regularly reported following a diagnosis of chronic illness with regards to a loss of how life used to be, a loss of spontaneity due to the restrictions the condition places on participation in activities, and a loss of the future that was expected (Christie & Khatun, 2012). Children with chronic illness may also experience feelings of fear of rejection from both family and peers, low self-esteem, fear of restrictions that their condition may create, and anxiety related to the reactions of their peers (Theofanidis, 2007). While older children and young adults’ emotional reactions will arise as result of their awareness of their condition and the burden it carries, young children may not grasp the implications of having a chronic illness in quite the same way (Curtis & Luby, 2008).
Children and young people with a chronic illness face a range of stressors that can increase the likelihood of development of mental health problems (Hamall et al, 2014). These include stress related to daily role functioning (for example, missing school and restrictions on participation in sports), stress related to treatment (for example, invasive or painful procedures and the side effects related to treatment), and stress related to uncertainty (for example, wondering what caused the condition or what the future will bring) (Compas et al, 2012). It is therefore not surprising that these children are more likely to show maladjustment compared to their healthy peers, and tend to suffer more from emotional, behavioural and psychiatric symptoms (Turkel & Pao, 2007; Stam et al, 2006; Edwards & Titman, 2010).
It has been found that the risk of psychological adjustment problems during childhood can vary across illnesses and are not specific to the diagnosis but rather a reflection of the difficulties associated with living with a chronic illness (Lavigne and Faier-Routman, 1992, as cited in WHO, 2007; Gledhill et al, 2000). For example, it has often been assumed that children with severe and life-threatening conditions would be at greater risk of difficulty than children with milder conditions (Edwards & Titman, 2010; Gledhill et al, 2000). Yet it must be acknowledged that conditions can be considered ‘severe’ in different ways, with some being severe in the sense of life-threatening but cause no day-to-day restrictions or pain, while other conditions are not life-threatening but cause pain or discomfort and require treatment regimes on a daily basis; and how a condition is considered often depends on the child’s perceptions of how their condition impacts on their life (ibid). Risk of emotional difficulties also appears to vary according to the stage of illness (Gledhill et al, 2000); for example, it was reported that almost 60% of children at the time of starting dialysis had psychological issues, but one year later, following stabilisation of their condition, the frequency of problems was reduced to 21% (Wass et al, 1977, as cited in (Gledhill et al, 2000).
Having a chronic illness can disrupt a child’s view of themselves, triggering feelings of anxiety, depression, resentment and feelings of helplessness (Lawrence, 2012). The child may also have feelings of guilt regarding the demands their illness makes on the family, as well as the need to come to terms with a reduced level of autonomy (ibid). The limitations imposed by a chronic illness, including treatment regimes and the protective reactions of parents, can become real barriers to the acquisition of independence and autonomy; especially for children whose parents are overly protective, as this can decrease their confidence in themselves and their abilities (Falvo, 2005).
The child may feel self-conscious about their condition, more so if they are teased or bullied, and potentially develop emotional disorders such as anxiety or depression as a result (DoE, 2014), with around twice as many children and young people with chronic illness having high levels of depression and anxiety when compared with healthy peers (Clarke-Steffen, 1997).
Although babies and young children are wholly unembarrassed about showing off their bodies and, while curious about body differences, are usually non-judgemental (Edwards & Titman, 2010); once a sense of self-identity has been established and it is more obvious that they are different to other children their age, emotional difficulties may develop, impacting on their self-confidence and esteem (ibid). Children are especially sensitive to being treated differently from their peers, particularly if there are special procedures in place for them, and this can cause them to feel self-conscious and singled out, in addition to the reminder that they are different (ibid). This can result in less adherence to treatment programmes as the child attempts to ‘fit in’ (ibid). Young adults in particular are incredibly responsive to difference from the norm, with as many as 10% of young adults with no visible differences reporting that they have on occasion not attended school because of the way they look, and 30% reporting that they do not offer answers in class so as not to draw attention to themselves; thus, it can be assumed that those children who do have visible differences due to a chronic illness will find it even harder to feel confident about themselves, affecting their overall self-esteem (Edwards &Titman, 2010). Research indicates that there are particular challenges for children with chronic illnesses that entail ‘invisible differences’ regarding their self-identity, with many young people going to considerable lengths to hide their ‘difference’ from their peers in order to appear ‘normal’ due to the embarrassment they feel at the thought of being found out (Pless, 1984, as cited in Edwards & Titman, 2010).
However, children are resilient, and it is, therefore, not inevitable that children with chronic illness develop psychiatric problems, and many cope well with the demands of their condition (Turkel & Pao, 2007; Edwards & Titman, 2010). Miller’s (1993, as cited in Barlow & Ellard, 2006) review of psychosocial factors concluded that, overall, children with rheumatic conditions show no evidence of any psychological or social dysfunction. Similarly, studies into the psychological functioning of children with Juvenile Idiopathic Arthritis found them to either be within a normal range, or failed to find any significant differences between those children and their healthy peers (Huygen et al, 2000; Shaw, 2001, as cited in Barlow & Ellard, 2006). However, this contrasts with other studies which found evidence that children with rheumatic diseases are at an elevated risk of depression and adjustment problems (Bennett, 1994; LeBovidge et al, 2003), with Vandvik and Eckblad’s study (1990) finding that, of 106 children suffering from juvenile idiopathic arthritis, 64% had at least a mild level of psychological dysfunction and 50% had a psychiatric diagnosis such as depression or affective disorder.
Impact of chronic illness on the child’s social wellbeing
Establishing positive peer relationships has been shown to be an important developmental task in childhood, with high-quality friendships and peer acceptance being related to the development of lifelong social skills and higher levels of adjustment in later life, as well as serving as a ‘buffer’ when difficulties arise (Forgeron et al, 2010; Martinez et al, 2011; Cousins et al, 2015). It is thought that observed changes in a child’s social functioning can act as an indicator to parents and healthcare professionals to possible difficulties in the child’s disease management, treatment adherence or adjustment to diagnosis, or changes in their condition (Adams et al, 2002). Children and young people with chronic illness may be at an increased risk of developing social deficits and lower levels of peer contact compared to their healthy peers due to limitations associated with their illness, such as fewer social opportunities, restricted physical capabilities, or feelings of alienation from peers due to prolonged or frequent school absences (Martinez et al, 2011; Devine et al, 2012); for example, children with Spina Bifida have a tendency to be socially immature, have fewer friends and are less likely to have social contacts outside of their school environment compared with healthy children (Devine et al, 2012). These difficulties are likely to be further increased if the child has general developmental or learning difficulties associated with their conditions (Edwards & Titman, 2010).
Chronic illness often impinges on the social opportunities available for children and young people, as well as on their sense of being part of a social network, due to regular treatments or hospitalisation associated with their illness often significantly interrupting their time with peers both in school and out, meaning they lose touch with their peers, making it difficult to maintain friendships, resulting in feelings of isolation (Edwards & Titman, 2010; Barlow & Ellard, 2006; Olsson et al, 2005). Frequent absences from school may mean that children with chronic illness do not have sufficient opportunities to develop the social skills needed to establish friendships (Curtis & Luby, 2008).
Isolation from peer groups can hinder the development and maintenance of friendships (Christie & Khatun, 2012), particularly in children with taxing conditions or those that identify the child as being very different (WHO, 2007). Such children can be an obvious target for ridicule, especially those with conditions which limit their physical abilities, alter their physical appearance or disrupt daily activities (Eiser, 1993). Differences associated with physical appearance (such as growth problems, scars, hair loss) that make the child stand out have been linked with peer relationship difficulties (Edwards & Titman, 2010). It has been suggested that children who are visibly different from their peers are more likely to experience problems in peer relationships such as name calling, teasing and bullying; and this consequently impacts negatively on their self-esteem (Edwards & Titman, 2010; Curtis & Luby, 2008). Conversely, a study of school-aged children with diabetes by Alderfer et al (2002, as cited in Curtis & Luby, 2008) suggested that difficulties in social functioning can be seen as more ‘forgivable’ when an illness is considered an external factor in negative social behaviours; and this may be even more noticeable in young children as their peers, like them, have less cognitive capacity to understand the implications of the illness and may not associate it as part of the child’s social identity (Curtis & Luby, 2008).
Although, many young adults growing up with a chronic illness make a good adjustment into adult life, some struggle with the impact of their condition on their overall wellbeing and social development may be delayed as a result (Verhoof, 2014; Falvo, 2005). It has been suggested that those with chronic illnesses have a poorer social adult life, face greater professional difficulties, and are less likely to be married in relation to healthy comparisons (Pless, 1993; Kokkonen, 1995). Evidence from the studies reviewed by Gledhill et al (2000) indicates that by the age of thirty-six, unemployment is significantly higher in men with a history of childhood chronic illness (13.3%) compared with healthy individuals of the same age and gender (5.9%); and by the same age of thirty-six, there is a significant excess of single men (30.6% compared to 9.8%) and single women (19.1% compared to 4.7%). Participants (children and adolescents with chronic illness and their parents) in Adams et al (2002 p.598) study of social functioning reported several areas as being problematic for children with chronic illness, including ‘missing school’, ‘does not take part in school activities’, ‘is left out from activities or games with other children’, ‘does not play team sports’, ‘feels different from other children’, and ‘does not like others to know about diet, medication etc’. However, parents consistently reported all areas as more problematic than the children and adolescents themselves (Adams et al, 2002); and it appears that children and adolescents perceive themselves as being as competent as their healthy peers in daily activities at school and in their social behaviour (Huygen et al, 2000). On the other hand, in most disease groups of Stam et al (2006) study, the young adults had achieved fewer milestones than the comparison group with respect to autonomy, psychosexual and social development, or achieved these milestones when they were older than the comparison group. Young people with chronic illnesses may become marginalised or rejected for being ‘different’, impacting on their self-esteem at a time when body image and identity largely depend on ‘fitting in’. This indicates the importance of encouraging children with chronic illnesses to make friends and participate in peer activities, and, wherever possible, maintain friendships created before they became ill (Stam et al, 2006).
It seems that positive social support, defined by the National Cancer Institute as “a network of family, friends, neighbours, and community members that is available in times of need to give psychological, physical, and financial help” (National Cancer Institute, no date) of a high quality, in addition to involvement in extracurricular activities and being enrolled in a good school, can enhance individual’s resilience, though it is believed that the quality of relationships is a better predictor of resilience than quantity (Ozbay et al, 2007; Fee & Hinton, 2011). High levels of support appears to act as a buffer against the impact mental and physical illness has on the individual; and this has been observed in diverse populations including college students, new mothers, and parents of children with serious medical conditions (ibid). Results from Fee and Hinton’s study (2011) demonstrate that strong social support is positively correlated with resilient behaviour in boys with Duchenne muscular dystrophy; as social opportunities and involvement increased, problem behaviours decreased. Similarly, from Cal et al’s review of resilience in chronic illnesses (2015) it has been suggested that high levels of resilience can serve as a protective factor against the development of psychiatric problems. However, individuals that have low levels of resilience seem to have less capacity to deal with stress and other difficulties that arise from their condition (Cal et al, 2015).
There is a tendency to focus on the negative implications of chronic illness on social wellbeing and development; however, Eiser (1993) has identified that experience of illness may provide a child with the chance to develop more empathic responses to others, with children with a chronic illness providing qualitatively different and more sophisticated empathic responses than their healthy peers (Sterling & Friedman, 2010). Additionally, children and young people with Juvenile Chronic Arthritis show a much higher likelihood to focus on positive answers about social adjustment than the healthy comparison (Huygen et al, 2000). Woodson et al (2015) review of parent reports of child coping found that interacting with peers and family on Skype may offer opportunities for social connection and support, helping to buffer the child against negative thoughts and feelings. It is well known that having a social support network outside of the family benefits all family members, both physically and psychologically (Lawrence, 2012). Support from peers may serve as a protective factor against the risk of social isolation in children with a chronic illness (Martinez et al, 2011) and Skype interactions with peers may help to improve and maintain connections with classmates which aids in boosting the child’s morale (Woodson et al, 2015). Some schools may also be fortunate enough to have counsellors within the setting that can provide psychological support for the child either individually or with their parents to help them deal with peer relationship difficulties (Edwards & Titman, 2010).
Impact of chronic illness on healthy siblings’ emotional wellbeing
Although some healthy siblings experience very few difficulties in association with a childhood chronic illness (O’Brien et al, 2009), it has been acknowledged that they can be especially vulnerable (Eiser, 1997) and often experience feelings of confusion and anxiety (O’Brien, 2009). Mackner et al (2013) suggest that siblings of children with Inflammatory Bowel Disease are at greater risk of anxiety and depression than siblings of healthy children, and often have difficulty in adjusting to their sibling’s illness. Therefore, without support, these children are at potential risk of developing physical, emotional and psychological problems (Strohm, 2008). For example, Carpenter and Sahler (1991, as cited in Eiser, 1993) reported that of the one hundred and six apparently well-adjusted siblings of children with cancer, sixty-one showed symptoms of psychological problems including negative attention-seeking, emotional disorders, and withdrawal.
It has been suggested that healthy siblings show increased levels of anxiety, fear and a preoccupation with their own health when compared with matched control groups or standardised norms (Eiser, 1993). Ferrari (1987, as cited in Eiser, 1993) compared thirty siblings of children with diabetes and thirty children from families where all members were healthy and found that siblings of children with diabetes had a lower self-concept and concerns regarding their personal happiness, life satisfaction, and their school and intellectual achievements compared with the siblings of healthy children. Similarly, Sharpe and Rossiter’s (2002) meta-analysis of fifty-one studies focusing on the psychosocial functioning of siblings found that psychological functioning was lower for siblings of children with chronic illness compared with controls, and internalising behaviours, such as depression and anxiety, were associated with greater negative effects than externalising behaviours, such as aggression (ibid). It is unknown as to why the siblings respond by internalising their difficulties, but it may be linked to the idea that their frustrations can not easily be externalised given the unpredictable health status of their brother or sister so siblings keep their feelings to themselves to avoid being an extra burden to their parents (Sharpe & Rossiter, 2002; Vermaes et al, 2012).
Siblings will experience a variety of emotions and reactions to having a brother or sister with a chronic illness, and these may change over time and as the condition develops (Strohm, 2008). On the one hand, they may feel resentment and jealousy that the child with chronic illness has the parents’ attention, embarrassment over the implications of the illness, and fear over their sibling’s future yet, at the same time, feel compassion and protective of their ill brother or sister (Eiser, 1993; Strohm, 2008; Jordan, 2005). Siblings may experience feelings of guilt that they are healthy while their sibling is unwell in addition to the guilt experienced because of their feelings of resentment and jealousy (Christie & Khatun, 2012; Eiser, 1993). Houtzager et al (1999, as cited in Barlow & Ellard, 2006) reviewed thirty-five studies on sibling adjustment to childhood cancer with mixed results. Some of the reviewed studies reported higher levels of anxiety among siblings compared with controls or even the patient themselves, while others reported low levels of anxiety and depression, though the authors of such studies do suggest that these siblings are potentially using denial-like coping mechanisms (Houtzager et al, 1999, as cited in Barlow & Ellard, 2006). From Houtzager et al’s (2004) study into psychological adaptation of siblings of childhood cancer patients found that siblings were most distressed immediately after the diagnosis, though these initial adjustment difficulties had significantly diminished within the first six months following diagnosis; indicating that siblings actually show a notable resilience in their adjustment to the illness over time.
Healthy siblings may find that they receive less time and attention from their parents, face frequent separation from the rest of their family, curtailed family outings, and their daily routines can be significantly disrupted (Eiser, 1993; Eiser, 1997; Barlow & Ellard, 2006). Siblings of children with chronic illness generally feel excluded and overlooked with inadequate explanations or parents withholding information about the condition (Christie & Khatun, 2012; Eiser, 1997; Mackner et al, 2013). This may be due to parental instinct to protect their children through protecting healthy siblings from any knowledge of the illness and its implications (Eiser, 1993). This differential treatment, where siblings are essentially kept out of the loop, by parents has been associated with higher levels of conflict and negative behaviour between the child with a chronic illness and their siblings (ibid). Conversely, siblings can also be be a considerable help and support to one another, especially in families with several children where older siblings are able to act as a ‘surrogate parent’ for young children; healthy siblings can share information between themselves, and the child with a chronic illness may feel more comfortable discussing fears and doubts with siblings rather than parents (ibid). It has however been identified that older siblings and girls in particular appear to be most at risk of adjustment problems, with higher reported levels of anxiety, depression, loneliness and insecurity (Houtzager et al, 2004). This may be because older siblings eventually have more responsibilities and more involvement in the illness, and consequently suffer more from restrictions (ibid). Older sisters have expressed more concerns regarding their ill brother or sister’s situation and wellbeing than brothers which, alongside the responsibility of being involved in care, can be a source of considerable stress for older female siblings (Hallberg, 2013). Siblings often take on care roles alongside their parents, completing tasks such as feeding, assisting with therapies, personal care, and giving medication, as well as becoming an emotional support for parents, particularly for those parents experiencing anxiety or depression (Sibs, no date). The healthy sibling therefore knows the amount of stress that their parents are experiencing and may feel uncomfortable adding to that pressure. There is also growing attention to the idea of the ‘parentification’ of children in which children prematurely take on extensive family care responsibilities and essentially becomes a parent (East, 2010); and although this usually occurs in situations of family dysfunction (such as parental substance abuse), or parental death or abandonment, it can also occur in families of parental divorce, or those with disabled or chronically ill children (ibid). This can leave the sibling feeling high levels of embarrassment, worry regarding their responsibilities, and anger that their peers do not understand the pressure they are under (ibid).
However, there is an assertion that there are positive aspects of resilience in siblings of children with a chronic illness (Fleitas, 2000), with many exhibiting positive behaviour changes (Fleary & Heffer, 2013). Such children have greater opportunities to develop empathic skills that are not as readily available to children in healthy families (Eiser, 1997; Fleary & Heffer, 2013); in addition to having more positive attitudes and displaying increased maturity and independence in comparison to their peers (O’Brien, 2009; Edwards & Titman, 2010; Barlow & Ellard, 2006; Fleitas, 2000) allowing them to cope well with any issues and be enhanced by their experiences (Strohm, 2008; Eiser, 1993). Such children often develop very altruistic behaviours and, female siblings in particular, subsequently choose to work in the helping professions, perhaps reflecting their sensitivity towards the suffering of others that stems from an understanding of life’s fragility that young people from healthy families are perhaps not able to comprehend (Eiser, 1993; Eiser, 1997; Fleary & Heffer, 2013). This is highlighted by an eighteen-year-old interviewed in Fleitas’ study (2000) who said,
“I’ve grown up seeing how hard it’s been for my sister. I feel guilty that she’s the one who got the faulty genes, not me, and I’ve wanted to help people for as long as I can remember. Maybe she’s taught me that that’s how we all get by in life, ‘with a little help from our friends’. It makes me feel like I have something to offer the world when I work with people who are needy in one way or another”.
This development of altruism can be seen as very beneficial, but it must also be acknowledged that, for some siblings, this could be the result of having grown up believing their needs are secondary to the child with chronic illness, and that they have not been able to express the difficulties they themselves experience (Edwards & Titman, 2010).
Impact of chronic illness on healthy siblings’ social wellbeing
Mixed findings have been reported with regards to the social competence and peer relationships of children with chronic illness. Some studies have found that siblings do not show reduced levels of social competence (Kaminsky & Dewey, 2002; Alderfer et al, 2015). For example, results of Labay and Walco’s (2004) report show that the psychosocial adjustment of healthy siblings does not differ significantly from that of control groups or standardised norms with the exception of social competence, where healthy siblings were found to be less involved and successful in academic, extracurricular and social activities. This is supported in Alderfer and colleagues’ research (2015) which concluded that overall, siblings’ peer relationships are very similar to matched classroom peers in regard to social behaviour, number of friends, number of friendships reciprocated, and level of peer acceptance, suggesting that siblings are often socially resilient (ibid). The siblings’ self-perceptions of their social adequacy, social support from friends classmates and others at school, and relationship quality with friends are also similar to that of the comparison (ibid). The development of empathy and compassion, as mentioned in the previous section, may aid siblings as they create meaningful friendships and romantic relationships in later life (Fleary & Heffer, 2013).
Conversely, other studies suggest that siblings of children with chronic illness have high levels of loneliness and difficulties with peers (Kaminsky & Dewey, 2002). It has been suggested that siblings of children with cancer have reduced opportunities for social interaction and, while friends are an important source of support, relationships are often disrupted by attention toward the ill sibling (Alderfer et al, 2015). Social withdrawal as characterised by detachment and discomfort in close relationships seems to be common in late adolescence of siblings which may be due to a history of separation from parents for extended periods of time, in addition to being forced to face the fragility of life at an early age, potentially contributing to an avoidant attachment style (Fleary & Heffer, 2013). As mentioned earlier, girls seemed to exhibit more depressive symptoms and report failure and distrust in relationships than boys (Barrera et al, 2004; Fleary & Heffer, 2013) with the possible explanation again being that female siblings generally have more responsibility and consequently have less time for social activities and peer interactions (Strohm, 2008).
Chronic illness can threaten the strength of sibling relationships (Eiser, 1993) and this can impact on their relationships throughout life as children who have experienced difficult sibling relationships tend to have difficulty in developing and maintaining peer relationships later in life (ibid). The sibling relationship can be impacted both directly, as opportunities for the siblings to partake in activities together may be limited and the sibling’s concern for their brother or sister’s health may affect their emotional ties; and indirectly, as the sibling may have restricted opportunities for time with parents whose main focus is the child with the chronic condition (ibid). Siblings who reported poor communication with their parents about the diagnosis during childhood were more likely to experience social detachment, and failure, distrust or disinterest in supportive relationships (Fleary & Heffer, 2013). This could potentially be due to siblings having learned to detach themselves in response to not being able to communicate with their parents; or resulting from parents not being forthcoming with information about the condition, meaning the sibling has learned not to trust others (ibid).
Families with children with a chronic illness can potentially become socially isolated (Eiser, 1993). This may be for various reasons: as a response to the stigma attached with the condition; or as an attempt to protect the unwell child from general viruses that could further impact their, already, poor health (ibid). Social isolation may also be forced upon the family as friends and other families may feel useless in knowing how to help or what to say, or even be worried that the child’s condition is contagious (ibid).
Siblings of children with autism involved in Kaminsky and Dewey’s research (2002) whose parents were involved in support groups seemed to be more privileged to information about their brother or sister’s condition and were more likely to interact with other families of children of autism. The support gained from participation in such groups may aid in healthy psychological adjustment (Kaminsky & Dewey, 2002). Support from peers seems to be a good predictor of emotional adjustment and resilience, with lower peer support being associated with greater levels of anxiety, depression and maladjustment (Alderfer et al. 2015). This suggests that good social functioning is a vital resource for siblings of children with chronic illness as well as a sign of resilience (ibid). This is supported by Barrera et al (2004), who found that siblings who benefitted from a high level of social support were found to experience lower levels of depression and anxiety as well as fewer behavioural difficulties, indicating the protective role of social support.
Supporting children with chronic illness and their healthy siblings
There are many varieties of help available for children and young people with chronic illness and their siblings (Lawrence, 2012). Psychosocial care is essential in the effective treatment of children with chronic illness (Edwards & Titman, 2010) as children who are cared for both medically and psychologically are more likely to positively adjust to any challenges that are associated with their illness, allowing them to lead as normal a life as possible (ibid).
However, barriers to good psychosocial care can stem from the families who may resent suggestions that they are not coping well and, consequently, are reluctant to seek or accept additional help. In addition, the extra trips to hospital that come from appointment demands feeling like an extra burden to the family, making them less willing to commit (Eiser, 2004). Psychological service providers may be sceptical about taking children with chronic illness into their caseload due to a lack of training and medical knowledge surrounding the illness that could potentially leave them feeling inadequate and uncertain as to how to treat such children (ibid). In addition, medical staff, such as specialist consultants, have considerable knowledge and confidence in their abilities to manage psychosocial care for their patients so may be reluctant to refer them to other specialist services in the first place (ibid).
Child or young persons therapy can be used to educate the individual about their illness, and to teach them stress management techniques that promote healthy adjustment and buffer against stress (Lawrence, 2012). In some specialist paediatric settings, a routine psychological assessment is offered to all children when diagnosed with a chronic illness as part of their health management (Edwards & Titman, 2010); and this should be directed by important milestones in the child’s treatment or life, such as prior to a new medication or at the transition from primary to high school (ibid).
Actively listening to a child’s feelings and experiences ensures that they feel validated, and this can be particularly crucial for children whose negative experiences have previously been dismissed (Edwards & Titman, 2010). Talking and reflecting on their experiences can help children with a chronic illness to identify coping skills they have developed as a result, and encourage them to recognise how they have previously overcome difficulties so can, consequently, be able to apply their skills in present and future contexts (ibid).
Having friends, both with and without chronic illness, can have a vital role in minimising problems (Olsson, 2005). Deiros-Collado (2010, as cited in Edwards & Titman, 2010) carried out focus groups with adolescents with chronic illness to explore the meaning and benefits of group participation, and identified recurring themes of belonging, collective empowerment, and being able to build new identities. One finding was that the focus group became a supportive place in which the children could construct friendships with other group members that did not revolve around their condition but placed their talents, skills and abilities in their foreground (Deimos-Collado, 2010, as cited in Edwards & Titman, 2010). Peer support groups offer children and young people with chronic illness opportunities to meet and talk with others who are likely to understand their specific worries through shared activities and discussions, as well as giving them the unique role of providing support and empathy to those in similar situations (Olsson, 2005).
Some families are very resilient, with good sources of support. While they may find the diagnosis and adjustment of the child’s illness distressing, they have access to suitable support to help them cope (Edwards& Titman, 2010). Others may experience more difficulties and struggle to adjust; and may need support with practical or emotional difficulties, support interventions, and regular reviews of their needs (ibid). Family therapy or individual sibling support has been shown to promote positive adjustments, including educating them about the specific illness as well as teaching effective coping methods (Lawrence, 2012); and this can be instrumental in protecting healthy siblings’ physical and emotional wellbeing (O’Brien, 2009). Giving siblings of children with chronic illness little or no consideration, parents may not be motivated to access support services (Ballard, 2004). Therefore, professionals must endeavour to familiarise parents and carers with the structure, availability and benefits of support programmes (ibid). In practice, it can be challenging to include healthy siblings in any support interventions due to them generally not being present at clinic visits; but every opportunity must be taken to acknowledge the effect the chronic illness can have on them (Edwards & Titman, 2010). Some services organise sibling days or group sessions as part of their overall service that include both educations, and therapeutic activities (ibid). A group support programme evaluated by Houtzager et al (2005) was found to help healthy siblings discover new ways of dealing with the effects that their brother or sister’s illness has on their lives; and, overall, siblings were found to be less anxious. Social support has been identified as a predictor of resilience in both the general and chronically ill populations, and could therefore be accredited for the psychological benefits associated with group intervention programmes (Incledon et al, 2013).
Cognitive-Behavioural Therapy (CBT) is one method of psychotherapy with the most empirical evidence for efficacy in paediatric depression and anxiety (Mackner et al, 2013). James and Soler (2005) found that there was a remission of any anxiety disorder for 56% for the participants who received CBT compared with 28.8% for controls. CBT is based on the idea that thoughts, feelings, physical sensations and actions are all interrelated, and aims to modify maladaptive thoughts, feelings and behaviours in a positive way by breaking them down into smaller parts (Eccleston, 2015; NHS, 2016). During CBT sessions, a therapist works with the child to identify cognitively distorted knowledge thoughts and the effect they have on them. The therapist then teaches them skills to challenge the unhelpful thoughts with the end goal being that the individual can apply what they have learnt to daily life (Pao & Bosk, 2011; NHS, 2016). Szigethy et al (2004) piloted a manual-based CBT on eleven adolescents with inflammatory bowel disease. Before treatment, nine met the DSM-iv criteria for major depression and two met the criteria for minor depression. Following completion of CBT treatment, ten no longer met criteria for any depressive disorder and one met the criteria for minor depression. Similarly, all the studies reviewed by Bennett et al (2015) demonstrated positive results with regards to a decrease of anxiety and depression in children who receive interventions. Results from such studies indicate that CBT can be effectively used to treat anxiety and depression in children with chronic illness (Bennett et al, 2015).
Social Interaction Skills Training (SIST) has also been shown to be effective (Edwards & Titman, 2010). SIST is based on the idea that many individuals that have experienced frequent teasing and comments regarding their appearance will begin to withdraw from social encounters and automatically expect negative reactions from others (ibid). SIST involves the breakdown of complex social behaviours into smaller components, arranging them into order of difficulty, and gradually introducing them to the child (Encyclopedia of Mental Disorders, no date) in order to promote confidence when meeting, forming and maintaining relationships with other people (Edwards & Titman, 2010). Varna et al (1993, as cited in Weinberger & Barakat, 2007) compared a social skills training intervention with a school reintegration programme for sixty-four children recently diagnosed with cancer, and found that the children who received the three one-hour social skills training intervention perceived greater levels of peer and teacher support and exhibited fewer behavioural problems at the nine-month follow-up. The researchers suggested that social skills training may have preventative and protective effects, as its benefits may increase in the long-run (Weinberger & Barakat, 2007).
The Chronic Illness Peer Support programme (ChIPS) was introduced in Australia in 1993, arising from the challenges paediatricians experienced in dealing with difficult behaviours, social isolation, and absenteeism among young people with chronic illness (Olsson, 2005). The main focus of the programme is to connect children and young people with chronic illness (The Royal Children’s Hospital Melbourne, 2013) and aims to provide children with the opportunity to improve their adjustment to living with a chronic illness; develop a range of personal skills; and increase their sense of control over their health (Olsson, 2005). Topics are covered over an eight week period and are participant directed, usually focusing on issues including missing out and limitations; relationships; hospital visits and medication; recreation; and school (Olsson, 2005; The Royal Children’s Hospital Melbourne, 2013). Sessions are run by a health professional who acts as a facilitator and a young person with chronic illness as it is important to create an environment in which the children and young people feel safe enough to participate and discuss issues they feel are important to them (Olsson, 2005).
There are, however, some potential risks involved in intervention programmes. First, issues may arise if a child or young person discovers new information about their illness as a result of group discussions or when a peer with a similar condition is seen to deteriorate (Olsson, 2005). This is also true for CBT where the child is expected to confront their emotions and anxieties which could cause them to feel highly uncomfortable (NHS, 2016). Second, difficulties may come when a peer is seen to be making greater progress in a particular area that the individual is not as this comparison could result in reduced self-esteem and increased negative self-appraisal. Third, children and young people with limited social networks may become over-familiar with the support group and fail to make other connections. Fourth, amassing children and young people with similar backgrounds may create a subculture in which they identify themselves as being different and separate from ‘normal’ society (Olsson, 2005). Finally, many intervention programmes require commitment to the attendance of several sessions on a regular basis as well as extra work for the child to complete between sessions and this can be very time consuming therefore parents may not be motivated to take their children to such sessions (NHS, 2016).
Conclusion and Recommendation
From the literature reviewed, it seems that the emotional and social wellbeing of children and young people with chronic illness can be largely determined by the severity of their condition and the complications that accompany it, and the changeable nature of such complications is evident in the contradictory findings of some of the studies (WHO, 2007); however, severity is not always a good predictor of poor adjustment, but those conditions that have daily struggles. Children with chronic illnesses appear to be particularly self-conscious and have reduced self-confidence compared with peers, especially if they have a visible difference and this can lead them to be subject to bullying. In addition, frequent hospital visits and absence from school seem to impinge on children’s social opportunities. Resilience, positive social support networks and coping strategies all appear to influence a child’s adjustment to diagnosis and how they manage living with their condition, though this has the potential to change over time as their condition develops.
Again, there was contradictory evidence on the emotional and social adjustment in siblings. Some of the research identified siblings to be well adjusted with little or no emotional or social difficulties, while others suggested that siblings of children with chronic illness experience high levels of anxiety, pressure relating to burden of acting as a ‘second carer’, leading to increased stress levels, and social isolation. It is evident that growing up with a sibling with a chronic illness has both positive and negative effects; however, the negative effects appear to be more immediate, with many siblings experiencing feelings of distress, depression and anxiety following diagnosis as well as feeling guilty that they are well but their sibling is not; while the positive effects become more obvious later on during adolescence or adulthood, as many siblings are found to be more mature, independent, altruistic and empathic and often choose careers in the caring professions (Hallberg, 2013). Regardless of the severity, siblings of children with chronic illness do seem to experience some instability and disruption both emotionally and socially as a result of diagnosis (Fleary & Heffer, 2013).
From the review of literature, it seems that group support interventions, such as ChIPS, are effective in providing children with the opportunity to meet and talk with others who are in a similar situation to themselves. CBT has also shown to be a good method of reducing anxiety and depression in children with chronic illness; and SIST effective in improving social skills. We must, however, be aware of the risks and barriers to accessing support such as the potential for children to compare themselves to others which could have a negative impact on their self-confidence.
Through this research process, the student has been limited to literature that has previously been published by other academics and researchers. This means that the student could not focus on a new area of research due to the ethical issues associated with conducting research on children and the acutely or chronically ill.
Due to the contradictory nature of much of the research reviewed, it was challenging for the student to draw any resolute conclusions regarding the impact chronic illness has on children and their healthy siblings. This may be due to the fact the student did not focus on one or two specific conditions but chronic illness as a whole. For this reason, it could be beneficial for further study into the specific impacts of individual conditions.
From the research, the student believes that early support can act as a prevention technique against children with chronic illness developing emotional or social difficulties. Therefore, the student would recommend that hospitals offer all children with chronic illness and their siblings the chance to attend group support sessions as part of the diagnosis process. This would help them adjust to the condition, resulting in a reduced likelihood of them developing psychological difficulties and gives them the opportunity to meet others in a similar situation to discuss their worries as well as form and maintain friendships.
Word Count: 10,489
Adams, C., Streisand, R., Zawacki, T. and Joseph, K. (2002) ‘Living with a chronic illness: A measure of social functioning for children and adolescents’. Journal of Pediatric Psychology. 27(7). pp.593-605
Alderfer, M., Stanley, C., Conroy, R., Long, K., Fairclough, D., Kazak, A. and Noll, R. (2015) ‘The social functioning of siblings of children with cancer: A multi-informant investigation’. Journal of Pediatric Psychology. 40(3). pp.309-319
Bailey, C. (2007) A Guide to Qualitative Field Research. London: SAGE Publications
Ballard, K. (2004) ‘Meeting the needs of siblings of children with cancer’. Pediatric Nursing Journal. 30(5). pp.394-401
Barlow, J. and Ellard, D. (2006) ‘The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research’. Child: Care, Health and Development. 32(1). pp.19-31
Barrera, M., Fleming, C. and Khan, F. (2004) ‘The role of emotional social support in the psychological adjustment of siblings of children with cancer’. Child: Care, Health and Development. 30(2). pp.103-111
Beauchamp, T. and Childress, J. (2001) Principles of Biomedical Ethics. (5th edn). Oxford: Oxford University Press
Bennett, D. (1994) ‘Depression among children with chronic medical problems: A meta-analysis’. Journal of Pediatric Psychology. 19(2). pp.149-169
Bennett, S., Shaftan, R., Coughtrey, A., Walker, S. and Heyman, I. (2015) ‘Psychological interventions for mental health disorders in children with chronic physical illness: A systematic review’. Archives of Disease in Childhood. 100. pp.308-316
Booth, A., Papaioannou, D. and Sutton, A. (2012) Systematic Approaches to a Successful Literature Review. London: SAGE Publications
British Educational Research Association (2011) Ethical Guidelines for Educational Research. Available at: www.bera.ac.uk/wp-content/uploads/2013/12/BERA-Ethical-Guidelines-2011.pdf (Accessed: 24th January 2017)
Buchanan, A. and Hudson, B. (Ed). (2000) Promoting Children’s Emotional Well-being. Oxford: Oxford University Press
Cal, S., Ribeiro de Sá, L., Glustak, M. and Santiago, M. (2015) ‘Resilience in chronic diseases: A systematic review’. Cogent Psychology. 2(1024928)
Christie, D. and Khatun, H. (2012) ‘Adjusting to life with chronic illness’. Pediatric Psychology. 25(3). pp.194-197
Clarke-Steffen, L. (1997) ‘Reconstructing reality: Family strategies for managing childhood cancer’. Journal of Pediatric Nursing. 12(5). pp.278-287
Compas, B., Jaser, S. and Rodriguez, E. (2012) ‘Coping with chronic illness on children and adolescence’. Annual Feview of Clinical Psychology. 8. pp.455-480
Cousins, L., Kalapurakkel, S., Cohen, L. and Simons L. (2015) ‘Topical Review: Resilience resources and mechanisms in pediatric chronic pain’. Journal of Pediatric Psychology. 40(9). pp.840-845
Curtis, C. and Lucy, J. (2008) ‘Depression and social functioning among preschool children with chronic medical conditions’. Journal of Pediatrics. 153(3). pp.408-413
Department for Education (2014) Supporting pupils at school with medical conditions. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/306952/Statutory_guidance_on_supporting_pupils_at_school_with_medical_conditions.pdf (Accessed: 30th October 2016)
Devine, K., Holmbeck, G., Gayes, L. and Purcell, J. (2012) ‘Friendships of children and adolescents with Spina Bifida: Social adjustment, social performance, and social skills’. Journal of Pediatric Psychology. 37(2). pp.220-231
East, P. (2010) ‘Children’s Provision of Family Caregiving: Benefit or Burden?’. Child Development Perspectives. 4(1)
Eccleston, C., Fisher, E., Law, E., Bartlett, J. and Palermo, T. (2015) ‘Psychological interventions for parents of children and adolescents with chronic illness’. The Cochrane Database of Systematic Reviews. 4
Economic and Social Research Council (2015) ESRC Framework for Research Ethics. Available at: www.esrc.ac.uk/files/funding/guidance-for-applicants/ESRC-framework-for-research-ethics-2015 (Accessed: 24th January 2017)
Edwards, M. and Titman, P. (2010) Promoting Psychological Wellbeing in Children with Acute and Chronic Illness. London: Jessica Kingsley Publishers
Eiser, C. (1993) Growing up with a Chronic Disease. The Impact on Children and their Families. London: Jessica Kingsley Publishers
Eiser, C. (1997) ‘Effects of chronic illness on children and their families’. Advances in Psychiatric Treatment. 3. pp.204-210
Encyclopaedia of Mental Disorders (no date) Social Skills Training. Available at: www.minddisorders.com/Py-z/Social-skills-training.html (Accessed: 26th March 2017)
Falvo, D. (2005) Medical and Psychosocial Aspects of Chronic Illness and Disability. (3rd edn). London: Jones and Bartlett Publishers
Fee, R. and Hinton, V. (2011) ‘Resilience in Children Diagnosed with a Chronic Neuromuscular Disorder’. Journal of Developmental and Behavioural Paediatrics. 32(9). pp.644-650
Fernandez, C. (2008) ‘Ethical Issues in Health Research in Children’. Paediatrics and Child Health. 13(8). pp.707-712
Fleary, S. and Heffer, R. (2013) ‘Impact of growing up with a chronically ill sibling on well siblings’ late adolescent functioning’. ISRN Family Medicine. Article ID 737356
Fleitas, J. (2000) ‘When Jack Fell Down… Jill Came Tumbling After: Siblings in the Web of Illness and Disability’. The American Journal of Maternal/Child Nursing. 25(5). pp.267-273
Fouka, G. and Mantzorou, M. (2011) ‘What are the Major Ethical Issues in Conducting Research? Is there a Conflict between the Research Ethics and the Nature of Nursing?’. Health Science Journal. 5(1). pp.3-14
Fraser, S., Lewis, V., Ding, S., Kellett, M. and Robinson, C. (Ed.) (2004) Doing Research with Children and Young People. London: SAGE Publications
Gledhill, J., Rangel, L. and Garralda, E. (2000) ‘Surviving chronic physical illness: Psychosocial outcome in adult life’. Archives of Disease in Childhood. 83. pp.104-110
Greig, A. and Taylor, J. (1999) Doing Research with Children. London: SAGE Publications
Hallberg, U. (2013) ‘Situation and psychosocial well-being of older sisters to children with disabilities or chronic illnesses – the forgotten children?’ International Journal of Qualitative Studies on Health and Well-being. 8(1).
Houtzager, B., Oort, F., Hoekstra-Weebers, J., Caron, H., Grootenhuis, M. and Last, B. (2004) ‘Coping and family functions predict longitudinal psychological adaptation of siblings of childhood cancer patients’. Journal of Pediatric Psychology. 29(8). pp.591-605
Huygen, A., Kais, W. and Sinnema, G. (2000) ‘’. Annals of the Rheumatic Diseases. 59(4). pp.276-282
Incledon, E., Williams, L., Hazel,T., Heard, T., Flowers, A. and Hiscock, H. (2013) ‘A review of factors associated with mental health in siblings of children with chronic illness’. Journal of Child Health Care. pp.1-13
James, A. and Soler, A. (2005) ‘Cognitive behavioural therapy for anxiety disorders in children and adolescents’. The Cochrane Database of Systematic Reviews. 19(4)
Johnson, B. and Christensen, L. (2008) Educational Research: Quantitative, Qualitative and Mixed Approaches. London: SAGE Publications
Jordan, A. (2005) ‘The impact of pediatric chronic pain on the family’. Pediatric Pain Letter. 7(1). pp.5-8
Kaminksy, L. and Dewey, D. (2002) ‘Psychosocial adjustment in siblings of children with autism’. Journal of Child Psychology and Psychiatry. 43(2). pp.225-232
Labay, L. and Walco, G. (2004) ‘Brief Report: Empathy and Psychological Adjustment in Siblings of Children with Cancer’. Journal of Pediatric Psychology. 29(4). pp.309-314
Lawrence, E. (2012) The Impact of Chronic Illness on the Family. Available at: www.igliving.com/magazine/articles/IGL_2012_06_AR_The_Impact_of_Chronic_Illness_on_the_Family.pdf (Accessed: 30th October 2016)
LeBovidge, J., Lavigne, J., Donenberg, G. and Miller, M. (2003) ‘Psychological adjustment of children and adolescents with chronic arthritis: A meta-analytic review’. Journal of Pediatric Psychology. 28(1). pp.29-39
Liverpool Hope University (2016) Why use academic journals?. Available at: www.hope.ac.uk/media/liverpoolhope/contentassets/documents/library/help/media,12430,en.pdf (Accessed: 19th February 2017)
Mack we, L., Greenley, R., Szigethy, E., Herzer, M., Deer, K., and Hommel, K. (2013) ‘Psychosocial Issues in pediatric inflammatory bowel disease: Report of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition’. Journal of Pediatric Gastroenterology and Nutrition. 56(4). pp.449-458
Martinez, W., Smith Carter, J. and Legato, L. (2011) ‘Social competence in children with chronic illness: A meta-analytic review’. Journal of Pediatric Psychology. 36(8). pp.878-890
Medical Research Council (2004) MRC Ethics Guide: Medical research involving children. Available at: www.mrc.ac.uk/documents/pdf/medical-research-involving-children (Accessed: 24th January 2017)
National Cancer Institute (no date) NCI Dictionary of Cancer Terms. Available at: www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=440116 (Accessed: 9th January 2017)
NHS Confederation (2012) Investing in emotional and psychological wellbeing for patients with long-term conditions. Available at: www.nhsconfed.org/~/media/Confederation/Files/Publications/Documents/Investing%20in%20emotional%20and%20psychological%20wellbeing%20for%20patients%20long-term%20conditions%202016%20April%20final%20website.PDF (Accessed: 27th October 2017)
NHS (2016) Cognitive behavioural therapy (CBT). Available at: www.nhs.co.uk/Conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx (Accessed: 26th March 2017)
NHS Wales (no date) Chronic Conditions. Available at: www.wales.nhs.uk/healthtopics/conditions/chronicconditions (Accessed: 25th April 2017)
O’Brien, I., Duffy, A. and Nicholl, H. (2009) ‘Impact of childhood chronic illnesses on siblings: A literature review’. British Journal of Nursing. 18(22). pp.1358-1365
Olsson, C., Boyce, M., Toubourou, J. and Sawyer, S. (2005) ‘The role of peer support in facilitating psychosocial adjustment to chronic illness in adolescence’. Clinical Child Psychology and Psychiatry. 10(1). pp.78-87
Ozbay, F., Johnson, D., Dimoulas, E., Morgan, C., Charney, D. and Southwick, S. (2007) ‘Social support and resilience to stress: From neurobiology to clinical practice’. Psychiatry (Edgmont). 4(5). pp.35-40
Pao, M. and Bosk, A. (2011) ‘Anxiety in Medically Ill Children/Adolescents’. Depression and Anxiety. 28(1). pp.40-49
Richmond.go.uk (2014) What is emotional wellbeing? Available at: www.richmond.gov.uk/what_is_emotional_wellbeing (Accessed: 25th April 2017)
Sharpe, D. and Rossiter, L. (2002) ‘Siblings of children with a chronic illness: A meta-analysis’. Journal of Pediatric Psychology. 27(8). pp.699-710
Sibs (no date) The needs of young siblings. Available at: www.sibs.org.uk/supporting-young-siblings/professionals/needs-of-young-siblings (Accessed: 3rd April 2017)
Stam, H., Hartman, E., Deurloo, J., Groothoff, J., and Grootenhuis, M. (2006) ‘Young adult patients with a history of pediatric disease: Impact on course of life and transition into adulthood’. Journal of Adolescent Health. 39. pp.4-13
Sterling, C. and Friedman, A. (2010) ‘Empathic responding in children with a chronic illness’. Children’s Health Care. 25(1). pp.53-69
Strohm, K. (2008) ‘Too important to ignore: Siblings of children with special needs’. Australian e-Journal for the Advancement of Mental Health. 7(2)
Sullivan, L. (Ed.) (no date) ‘Fundamental Principle of Mixed Methods Research’. The SAGE Glossary of the Social and Behavioural Sciences. Available at: www.sk.sagepub.com/reference/behaviouralsciences/n1079.xml (Accessed: 23rd March 2017)
Szigethy, E., Whitton, S., Levy-Warren, A., DeMaso, D., Weisz, J. and Beardsley, W. (2004) ‘Cognitive-behavioural therapy for depression in adolescents with inflammatory bowel disease: A pilot study’. Journal of the American Academy of Child and Adolescent Psychiatry. 43. pp.1469-1477
Tariq, S. and Woodman, J. (2013) ‘Using mixed methods in health research’. JRSM Short Reports. 4(6)
The British Psychological Society (2010) Code of Human Research Ethics. Available at: www.bps.org.uk/sites/default/files/documents/code_of_human_research_ethics.pdf (Accessed: 24th January 2017)
The Royal Children’s Hospital Melbourne (2013) ChIPS Chronic Illness Peer Support: A program for young people. Available at: www.rch.org.au/uploadedFiles/Main/Content/chips/ChIPS%20DL%20Feb2013_web.pdf (Accessed: 23rd March 2017)
Theofanidis, D. (2007) ‘Chronic Illness in childhood: Psychosocial adaptation and nursing support for the child and family’. Health Science Journal. 2. pp.1-9
Turkel, S. and Pao, M. (2007) ‘Late Consequences of Pediatric Chronic Illness’. The Psychiatric Clinics of North America. 30(4). pp.819-835
UKCEN (no date) Ethical Frameworks. Available at: www.ukcen.net/ethical_issues/ethical_frameworks/the_four_principles_of_biomedical_ethics (Accessed: 24th January 2017)
University of Hull (no date) Determining Source Reliability. Available at: www.canvas.hull.ac.uk/courses/611/pages/determining-source-reliability (Accessed: 21st April 2017)
Vandvik, I. and Eckblad, G. (1990) ‘Relationship between pain, disease severity and psychosocial function in patients with juvenile chronic arthritis’. Scandinavian Journal of Rheumatology. 19. pp.295-302
Verhoof, E., Maurice-Stam, H., Heymans, H., Evers, A, and Grootenhuis, M. (2014) ‘Psychosocial wellbeing in young adults with chronic illness since childhood: the role of illness cognitions’. Child and Adolescent Psychiatry and Mental Health. 8(12)
Vermaes, I., Susanne, A. and van Bakel, H, (2012) ‘Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis’. Journal of Pediatric Psychology. 37(2). pp.166-184
Weinberger, B. and Barakat, L. (2007) ‘Social Skills Training Interventions: A Promising Approach for Children Treated for Brain Tumors’. Journal of Early and Intensive Behaviour Intervention. 4(3). pp.614-627
World Health Organisation (2007) The Adolescent with a Chronic Condition. Epidemiology, developmental issues and health care provision. Available at: apps.who.int/iris/bitstream/10665/43775/1/9789241595704_eng.pdf (Accessed : 2nd November 2016)
World Health Organisation (2014) Mental Health: a state of well-being. Available at: www.who.int/features/factfiles/mental_health/en/ (Accessed: 25th April 2017)
Woodson, K., Thakker, S., Burbage, M., Kichler, J. And Nabors, L. (2015) ‘Children with chronic illnesses: factors influencing family hardiness’. Issues in Comprehensive Pediatric Nursing. 38(1). pp.57-69
Cite This Work
To export a reference to this article please select a referencing stye below:
Related ServicesView all
Related ContentAll Tags
Content relating to: "Young People"
The term Young People often refers to those between childhood and adulthood, meaning that people aged 17-24 are often considered to be a young person.
Teacher Planning for Pupil Individual Educational Needs
In the light of the tasks which you have completed this week and background reading, discuss how teachers plan for and support their pupils’ individual educational needs. For your response, ref...
Practice-Based Mentoring and Coaching in Primary Schools
Introduction By way of introduction, the purpose for this assignment is to critically reflect on the practice-based processes of mentoring and coaching used within a primary school context, and to ev...
DMCA / Removal Request
If you are the original writer of this dissertation and no longer wish to have your work published on the UKDiss.com website then please: