\r\n\t2) The divergence between the levels of reliability required (twelve-9’s are not uncommon requirements) and the ability to identify or test failure modes that are increasingly unknown and unknowable
\r\n\t3) The divergence between the vulnerability of critical systems and the amount of damage that an individual ‘bad actor’ is able to inflict.
\r\n\t
\r\n\tThe book examines pioneering work to address these challenges and to ensure the timely arrival of antifragile critical systems into a world that currently sees humanity at the edge of a precipice.
Choledochal cyst (CDC) is the congenital dilatation of the bile ducts. The condition is a relatively rare abnormality with an estimated incidence of 1 in 13,000–15,000 in Western populations. However, this condition is far more common in the East, with an incidence of 1 per 1000 in Japan [1, 2]. The etiology remains unknown, but choledochal cysts are likely to be congenital in nature. Other proposed theories include distal obstruction, Abnormal Pancreatico-biliary Duct Junction (APBDJ), sphnictor oddi dysfunction. The pathologic features of the CDC frequently include an anomalous junction of the pancreatic and common bile ducts pancreaticobiliary malunion (PBMU), intrahepatic bile duct dilatation, and various degrees of hepatic fibrosis. Anatomically choledochal cysts are usually classified into three groups. However, based on the cholangiographic findings of intrahepatic ducts or pancreaticobiliary malunion (PBMU), the so-called long common channel, other forms and subgroups have been described. Left untreated, choledochal cysts can undergo malignant transformation and promote progressive hepatic fibrosis. About 20% case present during adulthood [3]. The gallbladder or bile duct malignancy has been reported as 6–20% and 15–20% in the United States and Japan, respectively [4, 5]. Therefore, treatment includes complete excision of the cysts with Roux-en-Y hepatojejunostomy and close surveillance.
\nThe etiology of choledochal cystic disease remains ill-defined; however, these malformations are considered congenital because they occur in fetuses and in newborns. The most commonly accepted theory for choledochal cysts is based on the observation that they are frequently associated with an anomalous pancreatobiliary duct junction (APBDJ). The “long common channel theory” explained that APBDJ allows reflux of pancreatic enzymes into the common bile duct. The reflux of pancreatic juice results in dissolution of the ductal wall and obstruction at distal end of cyst due to edema/fibrosis [6].
\nAnother theory proposed that this disease results from derangement in normal embryologic remodeling of ducts and causes varying degrees of destructive inflammation and segmental dilatation [7, 8]. Kusunoki et al. demonstrated suboptimal number of ganglion cells in the narrow portion if the common bile duct in patients with a choledochal cyst, as compared with controls [9, 10]. Based on an experimental study in which cystic dilatation of the common bile duct was produced by ligation of the distal end of the common bile duct in the neonatal lamb, an obstructive factor in the early developmental stage was described as a causative factor.
\nAPBJ is defined as a junction between the pancreatic and bile ducts and is located outside of the duodenal wall [11]. Babbitt analyzed that most choledochal cysts were complicated by APBJ [12]. APBJ is classified into two types (P-C and C-P type) by analyzing the fusion pattern between the pancreatic and bile ducts. In the P-C type, the main pancreatic duct joins the common bile duct, while the common bile duct appears to join the main pancreatic duct in the C-P type [13].
\nIn 1991, Komi et al. classified APBJ into three groups type I, II, and III according to the running of the accessory pancreatic duct and dilatation of the common channel Types I and II correspond to the C-P type, P-C type and type III was named as complex type of APBJ [14]. The incidence of type I, II, and III APBJ was 35.3, 21.6, 43.1%, respectively (Figures 1 and 2).
\nClassification of anomalous union between pancreatic and bile ducts.
a & b; Different types of CDC.
In 2003, Tashiro et al. analyzed 1627 patients of CDC and found patients with APBJ overlapped with that in normal cases. Furthermore, reflux of the pancreatic juice was reported in patients without APBDJ. Considering the conditions similar to APBJ, APBJ should be defined as when the long common channel with out any relation to sphincter of Oddi contraction [15].
\nBased on the site of cystic changes five types of CDC have been described by Todani and colleagues Type
Pathologic changes in the liver including portal fibrosis, central venous dilataion, parenchymal inflammation, and bile duct proliferation. Furthermore, fibrosis of cyst wall lined by columnar epithelium, lymphocytic infiltration and mucosal dysplasia is also seen. Histologic appearances in Type I (and sometimes type IV) CDC is lack biliary mucosa; type II CDC closely resemble gallbladder duplication. Type III cysts are lined by duodenal mucosa, while type V cysts can have extensive hepatic fibrosis [19]. In the walls of CC there is increasing rate of epithelial metaplasia and biliary intraepithelial neoplasia with advancing age. Although the incidence of malignancy at diagnosis of CDC increases with age at diagnosis, the risk of developing a future malignancy in an existing benign CDC during one’s remaining lifetime likely decreases with advancing age. Carcinogenesis is thought to occur via multistep genetic events where early K-ras and p53 mutations are seen in more than 60% of CC-related carcinomas, followed by a late occurring DPC-4 gene inactivation [20].
\nGallbladder carcinoma is identified in 10–25% of CDC-related malignancies 5.10 Malignancy is most commonly associated with types I and IV cysts, while types II, III, and V CC have minimal neoplastic risk. Most reported cases of malignant transformation are cholangiocarcinoma. The presence of an APBDU is thought to play a role in carcinogenesis and hepatocellular damage due to reflux of pancreatic contents into the bile duct [21].
\nCholedochal cysts are being diagnosed with increasing frequency on prenatal sonography. Ultrasound typically reveals a cyst at the porta hepatis. The differential diagnosis of a cyst in the porta hepatis includes duodenal atresia, mesenteric or omental cysts, hepatic cysts, intestinal duplication, gallbladder duplication, and ovarian cysts [27]. Because choledochal cysts are rare anomalies, prenatal diagnosis can be challenging. Sensitivity and specificity of prenatal ultrasound for choledochal cysts increases if sonologist performing the prenatal ultrasound is experienced MRI does not add significantly to the information found on ultrasound, but both imaging techniques may be complementary to each other.
\nCholedochal cysts historically presented in two broad categories:
\n(1) The infantile form, indicated by obstructive jaundice.
\n(2) The adult form, generally presenting with obstructive jaundice, pancreatitis, or ascending cholangitis.
\nThe infantile form present as obstructive jaundice. Jaundice in choledochal cyst is often intermittent because the obstruction is rarely complete unlike in biliary atresia. Character of jaundice is an important ominous symptom in differentiating obstructive jaundice due to biliary duct cystic dilatation from obstructive jaundice due to biliary atresia. Many of these neonates may have choledochal cysts in conjunction with complete or nearly complete biliary obstruction. Some authors report these patients as having biliary atresia in association with choledochal cyst, whereas others may term these patients as having surgically correctable biliary atresia. Distinguishing between cystic biliary atresia (CBA) and CDC is important because delayed therapy in CBA results in irreversible long-term sequelae. Unlike BA, CDC and CBA can typically be identified with prenatal ultrasound; however, these lesions are often all thought to be CC until surgical intervention [25]. On ultrasound, CBA on USG appears smaller with less dilatation of intrahepatic ducts [28].
\nThose with an infantile form need surgical excision and reconstruction within the first several weeks of life to avoid potential complications of cholangitis and hepatopathy. It is recommended to perform operation for asymptomatic choledochal cysts diagnosed prenatally within the first year of life. Congenital anomalies Associated with CC include double common bile duct, sclerosing cholangitis, congenital hepatic fibrosis, pancreatic cyst, and annular pancreas. Thirty one percent of pediatric patients with CDC have congenital cardiac anomaly and are most commonly manifested in infancy [29, 30].
\nHowever, CBA patients are symptomatic at earlier ages (less than 3 months old), and one-third of CBA patients develop liver failure or require liver transplantation. Triangular cord sign (a thickness of the echogenic anterior wall of the right portal vein just proximal to the right portal vein bifurcation) and the presence of biliary sludge are characteristic features suggestive of CBA rather than CDC.
\nCommon presentations in children in adults include abdominal pain, jaundice, and right upper quadrant mass and are most commonly seen in pediatric patients. The classic triad of abdominal pain, right upper quadrant mass, and obstructive jaundice, although still rare is seen in the pediatric population.
\nAdults are more likely to present with biliary or pancreatic symptoms and abdominal pain. Abdominal mass and Jaundice are feature sin childhood [26]. Adults with CC may present with symptomatic gallstones or acute cholecystitis, both of which are attributed to biliary stasis. Pain similar to recurrent pancreatitis has been described by some patients [22]. However, these patients may truly be having pancreatitis as a result of mucous plugging in the APBDJ.
\nComplications in Choledochal cysts in adults include development of cholelithiasis, liver cirrhosis, portal hypertension, hepatic abscess, and biliary carcinoma [23]. Thus, the incidence of postoperative complications is quite high even after primary cyst excision.
\nUltrasonography is a preliminary imaging modality for detecting choledochal cysts, which shows a cystic mass in the right upper quadrant apart from the gallbladder. The sensitivity of Ultrasonography for diagnosing choledochal cysts is 71–97%. In recent years, the number of patients who are diagnosed by antenatal ultrasonography is increasing. This method also clearly demonstrates IHBD dilatation and the state of the liver parenchyma. Caroli’s disease, polycystic liver disease and primary sclerosing cholangitis have similar in radiographic appearance. Cysts in polycystic liver disease do not communicate with the biliary tree, while primary sclerosing cholangitis is associated with a distal biliary obstruction and inflammatory bowel disease. A CBD measuring greater than 10 mm in an adults is an indication for further imaging in order to differentiate type I cysts from type IVA disease. Other features suggestive of CDC are a right upper quadrant cyst separate from the gallbladder and presence of a direct communication between the biliary tree and the cystic duct [24].
\nIf a choledochal cyst is suspected on ultrasound. The Technectium-99 HIDA scan has varying sensitivities, with 100% for type I cysts and 67% for type IV. It is particularly useful for showing continuity with bile ducts and diagnosis of cyst rupture in patients with choledochal cysts. Hepatobiliary scintigraphy complements other diagnostic tools in the diagnosis of choledochal cysts in pediatric patients [31]. A HIDA scan is be helpful for distinguishing between choledochal cyst and biliary atresia. Choledochal cyst will have contrast entering the duodenum, whereas in patients with biliary atresia will lack of contrast emptying into the duodenum.
\nCT scanning is a useful imaging tool for detecting choledochal cysts, but it is difficult to delineate pancreatic and bile duct union. Multidetector computed tomography (MDCT) provides detailed information on the pancreatic and bile ducts. In patients with suspected APBJ. Intrahepatic ducts, distal common bile ducts, and the pancreatic duct, are reliably identified on CT scan, thus useful in identifying type IV and type V cysts. CT cholangiography is now a historical imaging modality in CDC. The sensitivity of CT cholangiography is 90% for diagnosing choledochal cysts, and only 64% for characterizing the pancreatic duct [31]. The obvious drawbacks of CT or CT cholangiography are nephrotoxicity or hepatotoxicity and radiation exposure. Because of better investigations the use of CT is now very limited.
\nMRCP being a noninvasive investigation provides excellent delineation of pancreatico biliary ducts. It can replace ERCP as a diagnostic method for evaluation of biliary- pancreatic tract. MRCP reliably identifies APBDJ. Sensitivity and specificity of MRCP in diagnosing CDC is (70–100%) and (90–100%), respectively [32]. Although MRCP is limited in its ability to detect minor ductal abnormalities or small choledochoceles. 88 Magnetic resonance Cholangiopancreatography cannot be used for therapeutic purposes; therefore its utility remains limited as a diagnostic tool. Another advantage of MRCP over ERCP is that the pancreatic duct can be visualized upstream to an obstruction [33].
\nInvasive imaging studies also play a role in diagnosis and evaluation of the biliary anatomy. These modalities include cholangiography through endoscopic retrograde cholangiopancreatography (ERCP), percutaneous transhepatic cholangiography (PTC), and intraoperative cholangiogram. Endoscopic retrograde cholangiopancreatography (ERCP) is the gold standard for diagnosis of APBJ. ERCP is a type of invasive direct cholangiography, which may be associated with significant morbidity and mortality. ERCP can be challenging with respect to cannulization of the ampulla, due to recurrent inflammation and scarring. Cholangiography will delineate the anatomy and PBM and filling defects caused by stones, stenosis, or carcinomas. ERCP can be challenging with respect to cannulization of the ampulla. Cholangitis and pancreatitis after invasive cholangiography is higher than in the general population. A high volume of dye load is often required for adequate visualization, especially in the setting of large cysts [34].
\nThe surgical treatment of choledochal cystic disease has evolved and been refined over the past century. Aspiration and marsupialisation were the earliest forms of surgical therapy, the development of external biliary fistulae. Complete cyst excision and internal drainage by hepaticoduodenostomy (McWhorter in 1924) however, unacceptable mortality rates were encountered. Gross advocated internal drainage by choledochocystduodenostomy in 1933 because of unacceptably high risk of cyst excision at that time. Subsequent patient evaluation, however, revealed morbidity rates approaching 50%, primarily a result of cholangitis from duodenal reflux. The transection level of the common hepatic duct and currently, complete excision of a cyst with cholecystectomy and Roux-en-Y hepaticojejunostomy reconstruction (RYHJ) is the standard therapy in Types I and IV-A cysts [39]. Although the overall morbidity was diminished, the risk of malignant degeneration within the cystic remnant was recognized. Persistent, although markedly diminished episodes of cholangitis in RYHJ reconstructions led to the development of a valved jejunal interposition. No studies have independently confirmed the efficacy of valved intestinal conduits in the prevention of reflux-induced cholangitis. Pericystic inflammation may prevent safe complete-cyst excision. An internal approach, as described by Lilly, requires mucosectomy of the inner epithelial lining prior to reconstruction, but avoids the danger of a difficult posterior dissection.
\nA laparotomy through a high transverse or oblique right upper quadrant incision gives excellent exposure. The appearance of the liver, spleen, and pancreas is noted. If the anatomy has not been clearly defined preoperatively, an intraoperative cholangiogram should be performed. Aspirated the bile from the cyst and send it for culture and measurement of amylase/lipase. With large cysts, dye should be injection directly into the lower end of the common bile duct and into the common hepatic duct using a butterfly needle. Direct injection into a large cyst may obscure filling of the distal duct, it is important to try to identify the junction of the pancreatic and bile ducts [35]. If the cyst is extremely inflamed and adhesions are very dense, mucosectomy of the cyst should be performed rather than full-thickness dissection to minimize the risk of injuring the surrounding structures such as portal vein and hepatic artery (Figure 3). Where the bile duct begins to narrow down inferiorly, it is dissected circumferentially and encircled. The distal common bile duct is dissected to just within the head of the pancreas and transected. Common channel should be cleared with combination of saline irrigation, balloon catheters and, when possible. Intraoperative endoscopy helps removing plugs. Distal bile duct stump is transfixed with an absorbable suture [36] (Figure 4).
\nMucosectomy of distal portion of choledochal cyst.
Intrapancreatic dissection of terminal bile duct.
After dissection of GB and cyst, the portal vein is exposed. At times the right hepatic artery crosses in front of the cyst and is adherent to its wall and in this situation right hepatic artery must be carefully freed and preserved. The common hepatic duct is divided at the level of the bifurcation, where it should appear healthy and well vascularised (Figure 5).
\nThe common hepatic duct is transected at the level of distinct caliber change.
To allow a wider bilio-enteric anastomosis, left duct is incised 5–10 mm. Anastomosis to a narrow common hepatic duct should be avoided because of the long-term risk of stricture. The duodenojejunal flexure is identified and the Roux loop jejunum anastomosed at duct bifurcation using fine, interrupted, absorbable monofilament sutures (6/0 or 7/0 PDS) (Figure 6).
\nRoux-en-Y (RY) hepaticojejunostomy at the time of cyst excision.
Dilatation of the peripheral portion of the IHBD is associated with late complications which include recurrent cholangitis, stone formation, and anastomotic stricture. Intrahepatic cystenterostomy, or balloon dilatation of the stenosis at the time of cyst excision are options for dilatation of IHD.
\nThe prognosis of choledochal cyst is excellent if the diagnosis is made expediently prior to the development of irreversible liver disease or malignancy. The common late complications are cholangitis, obstructive jaundice, pancreatitis, stone formation, and portal hypertension [37]. Long-term outcomes after excision and hepaticojejunostomy reconstruction for choledochal cysts have been reported in different series. Most of these show that with standard treatment of excision and drainage, these patients will have no significant sequelae from this treatment.
\nThe congenital hepatic fibrosis coexistent in patients with type V CCD, it predisposes patient to portal hypertension. The incidence of cholelithiasis due to bile stasis is around 37.5–74%. Hepatolithiasis is most often associated with type IV-A CCD and is related to the presence of membranous or septal stenosis [38]. Total cyst excision reduces the risk of malignancy. However, sporadic malignancy has been reported after the excision of cysts. Cholangiocarcinoma developing after total resection of choledochal cysts after 10 to 34 years has been previously reported [39].
\nBiliary tract malignant tumor were associated in 80 patients (9.9%); 40 had bile duct cancer (50.0%), 35 had gallbladder cancer (43.8%), 3 had periampullary cancer, synchronous gallbladder and bile duct cancer was found in 2 patients. With a median follow-up duration of 51.8 months, 26.3% had a recurrence [40].
\nIncidence of hepato-biliary cancer in TYPE I, TYPE III, Type Iva, unknown was reported to be 71,1.3, 22.5 and 5%. Significantly more patients classified with type IVa had bile duct cancer and significantly more patients classified with type I had gallbladder cancer (
In a review of 200 children who had cyst excision. Primary cyst excision was performed in 176, 19 had cyst excision converted from other biliary surgery. The mean follow-up period was 10.9 years. In 188 patients Roux-en-Y hepaticojejunostomy was performed, 11 had standard hepaticoduodenostomy, and one had a jejunal interposition hepaticojejunostomy. There was no operative mortality. Eighteen (9.0%) patients had complications including cholangitis choledochus calculi, pancreatitis, and small bowel obstruction. Fifteen of the 18 children required surgical interventions such as revision of the hepaticoenterostomy. There was no occurrence of malignancy [42].
\nCDC is a congenital anomaly of hepatobiliary ducts. Various theories have been proposed including congenital origin, APBDJ, and defects in canalization during embryogenesis. CDC has been divided into five types depending on location of cyst. Choledochal cysts can have variable presentations ranging from infantile Cholestasis to pain abdomen jaundice and abdominal lump in adults. MRCP is the main investigation for diagnosis early diagnosis and treatment avoids possible late complications of cholangitis, cirrhosis, hepaticolithiasis and spontaneous perforation. Excision of the cyst with Roux-N Y hepaticojejunostomy is the best approach.
\nChildren of parents with a mental illness face childhoods that can be full of challenging experiences, threatening their quality of life, development and long-term outcomes [1, 2, 3, 4]. However, these children are not an officially recognised group in the UK, and data and statistics are not gathered about them. While UK policies recognise the needs of young carers, they do not address the specific challenges experienced by children whose parents have a mental illness. This is not the case in other countries; in Australia, these children are officially known as children of parents with mental illness (COPMI) and as “young relatives” in most Nordic countries. Children of parents with a mental illness remain a hidden group in the UK, and many are reluctant to identify as young carers due to the shame and stigma often associated with mental illness, making them vulnerable and at risk of neglect.
\nThe UK Children’s Commissioner Vulnerability Report (2018) found that in an average classroom, eight children have a parent with mental health problems—this is the equivalent to 25% of the UK school population [3]. In 2018, Our Time, a UK charity that advocates for and offers support to this group did an analysis of the existing data (supported by a team from Ernst and Young), which found that in excess of 3.4 million children and young people in the UK are currently living with a parent with a mental illness [5]. Further evidence indicates that, without support, 70% of these children are likely to go on to develop mental health problems themselves. With two ill parents, there is a 30–50% chance of the child developing a
In Germany, where Our Time’s partners, the “KidsTime Netzwerk”, use the KidsTime Workshop model to support children and families, research has identified 3.8 million children affected by parental mental illness [9].
\n\n
In excess of 3 million children in the UK live with a parent with a mental health issue.
Average of 8 children in an average classroom will be in this situation.
20–25% of the school population.
70% likely to develop a mental health condition.
Parental mental illness is one of the 10 adverse childhood experiences (ACEs), which has a lifetime impact on both physical and mental health.
Parental mental illness (PMI) is a root cause of many other ACEs.
WHO identifies PMI as one of the most important public health issues of our generation.
Intervention late after the onset of an ACE is less likely to be effective. Rising thresholds for acute support are exacerbated by significant reductions in early intervention spending by local authorities.
By focusing on clinically diagnosable mental illnesses, the children and adolescent service (CAMHS) interventions are too late to address ACEs.
In 2018 the Children’s Commissioner reported that despite the new provisions in law, 4 in 5 young carers were not identified.
Research into adverse childhood experiences, known as ACEs [10], identifies parental mental illness as one of the ten most powerful sources of toxic stress in young people. The presence of mental illness in a parent is known to negatively impact a child’s cognitive and language development, educational achievement and social, emotional and behavioural development [2, 3, 4, 10]. It can lead to anxiety and guilt coming from a sense of personal responsibility. Where there is severe mental illness in a parent and no second parent who is well it can lead to neglect or abuse. These children are also at greater risk of bullying, a lower standard of living and financial hardship [2, 3, 4, 5, 9].
\nFigures 1 and 2 show the lifetime impact of adverse childhood experiences affecting the mental and physical health of the individual as a result of toxic stress.
\nThe ACE pyramid (Centers for Disease Control and Prevention,
Long-term effects of ACEs (Centers for Disease Control and Prevention,
The hidden status of these young people in the UK means that they have no statutory entitlement to specific support related to parental mental illness. Provision of formal, organised support or targeted intervention is therefore at the discretion of local funding bodies or entirely dependent on the voluntary sector. Any informal support is dependent on the awareness and understanding of professionals coming into contact with these children to identify and support their needs. However, this sometimes requires stepping outside of the remit of current practice and expertise, adding an additional “burden” to already high workloads. Additionally, many professionals report worrying about talking to children in this situation, as they are concerned about “
This chapter will explain the impact of parental mental illness on children and the associated risk factors. We will provide examples of approaches proven to help children in this situation, using the KidsTime model as a case study. We will describe the approaches and methods of this practice model and explain how a combination of family therapy and systemic therapy approaches, together with drama, can create an effective multi-family therapy intervention. We will provide evidence of the impact of the KidsTime model and highlight some of the barriers to securing investment for preventative approaches. The chapter will conclude with recommendations for practice.
\nThis section outlines some of the common difficulties experienced by children and young people who have a parent with a mental illness. These include but are not limited to:
\nResearch, using case studies and personal testimonies, depict the kinds of difficulties experienced by children and young people growing up in a family where there is a parent with a mental illness. For example, it is common for children, particularly younger children, to report experiencing the same symptoms as their parents, i.e., symptoms caused by the parent’s diagnosis, such as delusions [12]. explains this can be due to the parent’s illness limiting their emotional availability to their child. Both symptoms of the illness and side-effects of the medication can result in emotional withdrawal from the child, which the child typically perceives as rejection. The child therefore intensifies his or her attempts to achieve closeness with the parent, which may cause the parent to withdraw further. Not only does this create a vicious cycle of interaction between the parent and the child, but these attempts can expose the child to further risk, such as the distress of being drawn into the parent’s psychopathological symptoms that are not their own. This is particularly likely in the absence of a sufficient explanation of the parent’s mental illness that could enable the child to differentiate between behaviours caused by the illness and those that are not [12, 13].
\nThe experience of living with a parent who has a mental illness often means that the child or young person often adopts caring roles in their family, which are not age-appropriate. They may fill any gaps in their parent’s role, which the parent is not consistently able to fill themselves due to their illness. This is the case both when the parent is markedly unwell and thus genuinely less able and also when the parent is able, but the child has become used to fulfilling this role or does so in anticipation of the parent’s next period of illness. The young person may care for their parent and other family members practically, through assuming responsibility for structuring the daily life of the family, fulfilling siblings’ needs or household tasks, but also emotionally, in that their mind is occupied by issues related to their parent’s wellbeing [12, 13]. These children also experience frequent role reversal, as they help their parent manage symptoms of their mental illness, such as emotional distress or behavioural difficulties. This often leads to
The long-term impact of such experiences can be that children in this situation gradually form a view of the adults around them as having limited capabilities and therefore do not trust or expect adults to meet their needs. The responsibilities they believe they must fulfil themselves are a large burden for a young person to carry. These young people will often experience feelings of guilt in taking over the parent’s role and inadequacy, while trying, and inevitably failing, to navigate such unrealistic responsibilities. This can also negatively impact their own self-esteem and sense of self-efficacy, and they may start to question their capabilities in other spheres of their life, which also has an adverse effect on their wellbeing. This combination of taking responsibility for others and worrying that they are not up to it is often carried into later life and causes hidden stress and sometimes prevents them from fulfilling their full potential [14, 15].
\nChildren of parents with a mental illness and their families suffer from the shame and stigma surrounding mental illness in multiple ways [9, 14, 16]. It hinders communication about mental illness and emotions more generally within the family. It also hinders communication and the development of supportive bonds outside of the family, i.e., with extended family, community and other social networks. This leads to feelings of isolation and withdrawal from social interaction [9, 14]. As a result, many children of parents with a mental illness feel very different to their peers:
\nSuch shame, stigma and isolation, combined with children’s imagination, means many of these children live with damaging fears and/or misconceptions about mental illness. For example, they fear they will “catch” their parent’s illness, that they are predetermined to developing it themselves, or that they caused the illness or its symptoms [15, 16]. The shame, stigma, fear and isolation further decrease the likelihood that they will ask for help, advice or information that would reassure them and enable them to make sense of their situation and develop strategies for coping with it.
\nThe KidsTime model is built on three principles in its work with children and families affected by parental mental illness and will be described in more detail in the next section [2, 11].
Having a good explanation
Having a trusted adult to talk to
Knowing you are not alone
Many children affected by parental mental illness report receiving little or no information or explanation about their parent’s illness. Even at the point of hospitalisation, only ~1 in 3 young people receive any information about their parent’s situation [17]. Not having an explanation or not understanding what is happening can be an unsettling experience in itself. However, young people who have been given an explanation often identify this as a key factor in helping them to cope with their situation. Receiving an explanation about their parent’s mental illness could make a significant difference in helping affected children to feel more in control of their situation. It could also mitigate the impact or even prevent the development of frightening misconceptions about mental illness and the confusion and self-blame many young people feel about the origins of the illness and its symptoms. This would enable children to differentiate between their parent’s “ill” and “non-ill” behaviours and thus also decrease the likelihood of adopting any of these behaviours themselves [13]. Having a good explanation is one of three protective factors identified by international research as key in building resilience for children whose parent/s have a mental illness.
\nThere is a lack of specialist support for children affected by parental mental illness in the UK. These children may cross paths with multiple services, such as health services, children’s social care, schools or professionals directly involved in their parent’s psychiatric or social care. However, these professionals do not have the awareness or understanding of the unique experiences of children living with, or caring for, a parent with mental health issues and also often lack confidence in speaking to children about mental illness. The negative impact of this is twofold: Firstly, it reinforces these young people’s disillusionment with adults as protective or supportive figures. Secondly, these young carers remain under the radar and are therefore unlikely to receive a satisfactory explanation or helpful support. However, the potential harm and many of the risks associated with having a parent with a mental illness can be addressed by training adults to provide good, child-friendly explanations and appropriate support, which increase the protective factors and develop the child’s resilience, examples of which will be given in the following sections.
\nAdverse childhood experiences (ACE) have recently become the focus of research and public discourse. However, despite its official recognition as an ACE, parental mental illness has been somewhat overlooked in this debate, and there is no recognition or provision for children affected by parental mental illness in England.
\nOur Time is a UK charity that was set up to advocate on behalf of this group through raising awareness of the issue and developing specific support through the KidsTime Workshop approach, which has been adopted across the UK, Germany and Spain. These are multi-family support groups that combine systemic family therapy approaches, drama and play to provide families with the three protective factors outlined above. There are currently 12 KidsTime Workshops operational in England, supporting up to 250 children and their families.
\nKidsTime Workshops take place once a month, after school, for ~2.5 h, and are run by a multidisciplinary team of at least three members of staff. The model requires the following critical staff members:
Clinical Lead, with a clinical background working in mental health services (often a psychiatrist or clinical psychologist or family therapist)
Drama Lead, who has experience in creative and drama-led group work with children
Logistical Lead/Coordinator, responsible for managing referrals, engaging and supporting families to attend the workshop and logistics (venue, equipment, transportation, etc.)
The group begins with all staff and families, (typically 6–10 families per workshop), coming together for a playful activity, followed by a seminar-style session that explores a single topic related to (parental) mental illness. The Clinical Lead facilitates this session using informal discussion and playful activities. Importantly, the particular topic will have been identified by the families themselves as something they want to discuss, for example, what to do in a crisis.
\nThe KidsTime Workshops have developed a model for explaining mental illness to children. Explanations are provided by the Clinical Lead, which is relevant to the seminar topic (i.e., not at every workshop). The Clinical Lead will employ visual aids and clear, simple and child-friendly language to describe how the brain works and how it can become “overloaded” as well as other aspects of mental illness (e.g., side-effects of medication) without being a diagnosis specific. An example of this can be seen in the videos, “
After the seminar, the families separate into two groups, one for adults and the other for children, which run in parallel for 1 h. The children’s group is facilitated by the Drama Lead. It starts with group games to help the children relax and focus, followed by drama work during which the young people create, rehearse, perform, and film a dramatic scene. The drama content will often be related to the seminar topic, but it is important that the children are free to set and interpret the topic themselves. The drama allows the children and young people to address issues of interest or concern without having to expose their own personal situation, giving them a voice and a way to explore different perspectives and reactions to difficult family issues.
\nThe adult group consists of the parents or carers (sometimes guardians, grandparents or close relatives), with or without a mental illness, and explores their experiences of being a parent with a mental illness or supporting the family in which this is the issue, sometimes using the seminar topic as a starting point. The discussion is facilitated by the Clinical Lead who ensures that the experiences and needs of the children are a central focus. The adult group provides an opportunity for parents to talk more openly about their own experience and the challenges of parenting with a mental illness in a non-judgemental environment and to receive support and encouragement from one another.
\nThe children, parents and staff reunite after their respective groups for 30–45 min. First, everyone takes a break and shares food together (traditionally pizza because the children like it and it is easy to prepare). Then, everyone watches the film of the young people’s drama, which leads to a collective group discussion about what the drama communicates and what insights the children and young people have demonstrated in their dramatisation. The parents contribute to the discussion by sharing a summary of their group discussion and their own reflections from watching the drama.
\nWhile the KidsTime Workshop model draws on some therapeutic methods and techniques, KidsTime is not designed as a form of therapy, but it is therapeutic in its effects. The design aims to create a community where the families can safely share their experience and knowledge and are listened to and able to ask the questions they need to ask without fear of judgement or having solutions imposed on them. The aim is to provide information, support and some relief to the families through a social intervention, while children and their needs remain the focus. Cooklin et al. state that an explicitly therapeutic intervention directed at the children may lead to the child seriously misjudging their predicament and adding to the sense that they (the child) are the problem and encourage further mistrust in adults [16] because they are not taken seriously. Firstly, the offer of therapy to the child may be falsely perceived as confirmation that they, like their parents, are going to develop a mental illness. Secondly, as these children will often adopt responsibilities beyond their years, in nature and volume, there is a risk that the child or young person would conclude that they are somehow failing to solve the problem or feel dismissed and undermined, if treated as a passive recipient of therapy. Therefore, the approach of professionals should aspire to take the role of an understanding, friend/mentor or relative rather than the formal and inevitably hierarchical role in which a therapist may be perceived.
\n“
“
This section outlines some of the key approaches employed by the KidsTime model to achieve the desired protective factors, particularly and uniquely, an age-appropriate explanation of mental illness, its treatments and impact.
\nThe model views and encourages families to appreciate the systemic contributors to experiences; that the experience of each individual in the family results from their relationships with other members of the family; and what their feelings and thoughts about these relationships are. Based on this, the individual forms their view of themselves and perceptions of others. Bringing the whole family together to think about their situation and find ways of managing their lives in the context of the illness is one of the innovative and most powerful aspects of the model.
\nThe KidsTime model recognises and aims to counter the potentially damaging effect of parental mental illness on the quality of social interactions within the family and with the wider social environment and support networks (other families and services, etc.) including social care providers, teachers and even the school. It aims to do so through facilitating communication between family members, with the focus of helping them understand the role of each person and the impact of parental mental illness on them. The model aims to promote social ties and trust between family members, neighbours and the general social world within which the family is located.
\nIn general, families develop different patterns of internal communication and sharing of experiences. In families affected by parental mental illness, there is often little or no communication about the mental illness, due to shame and stigma, and a lack of understanding about mental illness [15, 16]. KidsTime Workshops aim to combat this stigma and social withdrawal by encouraging families to speak more freely about mental illness and finding creative ways to make this easier. Adapted systemic therapy methods, such as sculpture work, are used to help families visualise relationships and patterns of communication; this facilitates mutual reflection and discussion in the group helping them to identify their current patterns and how to develop healthier ones [18].
\nWhile the effect of parental mental illness on the children is the overarching focus of the parent and children’s groups within the KidsTime model, parents’ reactions to the impact of their illness are also actively discussed and considered. This results in children communicating their experiences to, and receiving feedback from, their family and the wider group (and vice versa), leading to a multi-systemic perspective rather than one-direction linear communication. This also leads to group interactions in which everyone is considered on the same level and equally able to contribute to discussion, thereby recognising the young people’s knowledge and experience and the roles they perform within family life.
\nAlso consistent with systemic approaches, the KidsTime model puts special emphasis on recognising and promoting families’ capabilities. Families are respected as autonomous, self-organising systems and capable experts in their own situation. Within this, particular efforts are made to appreciate the young people’s knowledge and expertise in their parent’s mental health. Indeed, young carers will often notice signs of crisis or decline in their parents far earlier than the parent themselves or professionals. However, for a number of reasons that can be very frustrating and damaging for the child, this expertise is often invalidated in their interactions with the adults around them. Children and young people express frustration that they are often the closest observer of the parent and have responsibilities beyond their years and yet are not consulted, listened to, and frequently talked over by professionals. This combination of shouldering adult responsibility and being treated as a child who has no information or insight is particularly difficult and leads to mistrust and resignation on the child’s behalf, adding to the notion that they are on their own with the problem and that adults cannot be relied upon, which leads to hyper-independence. The KidsTime model aims to be realistic about the different family situations and challenges and to support and empower affected young people within their roles to develop appropriate coping strategies that will help them to understand and manage their own situation rather than “fixing” the problem for them and importantly knowing what to do in a time of crisis and developing a network of people to whom they can turn to for help when they notice that their parent’s mental health is deteriorating. This means that awareness raising and the education of professionals is a key factor in supporting these children and young people.
\nMulti-family work is based on systemic approaches; it aims to combine the benefits of single-family therapy with group therapy while still encouraging the agency of all individuals participating.
\nThe coming together of families in similar situations has multiple benefits, particularly when the shared experiences are as stigmatised and hidden as those related to parental mental illness. It enables affected families to discuss mental health issues without one child, parent or family feeling exposed, judged or different. It is also crucial that facilitators do not single anyone out. The KidsTime Workshop model encourages openness and reflection, and, through conversations about mental illness and common experiences, it reduces the often-associated stigma and shame-induced isolation. Unlike in the outside world, at KidsTime, the individuals and families are no longer the odd ones out:
\nMulti-family work, in this context, is intended to enable solidarity and a sense of community between families, a sense that “we are all in this together”. The individual family is viewed as part of the wider system of multiple families—a system that all families contribute to and benefit from. The families build a social network and mutually support each other. One of the most powerful ways in which this happens is the socialising and exchanging of experiences, ideas and advice facilitated by the multi-family model. In the KidsTime Workshop, families use each other as resources. Sharing in a multi-family group means they learn from each other’s experiences and perspectives and are empowered to make changes themselves. In this sense, the multi-family model is intended to contribute towards helping families to help themselves; it allows individual parents and children to hear both positive and corrective responses from other adults and children, which may be both more acceptable and meaningful than comments from professionals [16, 18].
\nActively involving families in discussion of similar problems in other families strengthens the self-esteem and agency of all involved. When experiencing difficulties, people tend to develop rigid and narrow ways of problem solving but are still often able to offer useful ideas to others in similar situations. Drawing on the expertise and experiences of families in similar situations leads to families viewing themselves more positively, as more capable. This strengthens self-esteem and the family’s sense of agency and for the adults, in particular, a sense of pride as capable parents. In turn, this may enable families to become more resourceful and creative in finding solutions for their own difficulties [18]. Thus, the group becomes more powerful than any single therapist.
\nMethods of creative therapy and drama work are powerful tools in creating a playful attitude and a relaxed, light-hearted atmosphere. This facilitates young people to have fun and foster positive relationships with each other and their families. It is within this type of setting that the young people are able to relax and to engage with drama as a powerful, therapeutic tool in the ways outlined below. Children of parents with a mental illness are often highly anxious and stressed, and the drama and games, first and foremost, allow them to forget their worries and just have fun, to be a child and to be able to play like a child, free from the burden of looking out for their parents, because they are safe in the parent’s group.
\nIn the young people’s group, playful exercises are combined with devising and acting out fictional scenes together. Designing the content of these dramas acts as a channel of free expression for fear, anger and anxiety or other difficult emotions that a young carer may struggle to access and express in daily life. The invention of fictional characters also means children can choose to play out different perspectives and new narratives—ideals of who they want to be. This encourages optimism and gives them a sense of control over their situation, thereby enhancing their self-esteem and trust in their ability to take action.
\nWhile the dramas do address parental mental illness, they often do so in an indirect or metaphorical way. They allow the children to differentiate from the illness, exploring it from a removed and outside perspective and not getting caught up in it. Indeed, the staff are careful not to lead the young people into sharing their specific experiences, as the drama work is intended to act as a helpful tool to enable young people to explore their experiences from a distance, to make up stories and create roles that focus on general aspects of mental illness and crisis.
\nThe dramas tend to capture the everyday experiences of the children and, in a more or less explicit way, the impact of their parent’s mental illness. The dramas are filmed and played back to parents and staff and therefore serve as an effective channel for young people to communicate their experiences and fears. Moreover, the themes and experiences depicted in the dramas are not owned by one person; they are devised, played out and therefore communicated, as a group; this feels safer and less threatening for the young people to express and for the adults to receive.
\nThe dramas are also useful in communicating important messages and explanations of mental illness to young people. The KidsTime model emphasises that explanations should address and challenge presumptions and fears that young people have about mental illness, for example, that they might “catch the illness themselves”, which the dramas frequently illustrate. In order to reduce rigid ideas and fears about mental illness in young people, the dramas should also present mental illness as a changeable process rather than as a fixed, constant entity. Including the subject of mental illness in dynamic dramas is particularly useful as it depicts mental illnesses through characters’ experiences rather than through listing signs and symptoms of diagnostic criteria.
\nThe drama work contributes to the aim of the workshops in creating a space where “kids can be kids”. The drama is part of a predictable and secure structure within which children do not take the lead, do not have to feel responsible and are thus able to relax and play in their more age-appropriate roles. In this way, the drama work enables the team to strike the important balance between the serious and the playful. The overall aim of the workshops is to provide a relaxed environment within which young people can explore and recognise their own roles, and the challenges within these, and have this validated by others while remaining optimistic and hopeful for the future. At KidsTime, young people are encouraged to recognise their successes and strengths despite their difficult situation and to have fun while doing so, which is enabled by creating an environment where they can engage in more age-appropriate roles and activities. The ability to play is a fundamental aspect of psychological health and creativity, and this is built into the method. It is noticeable that when children first come into the workshop, the ability to join in and play is very low but grows quite quickly once they feel safe.
\nTo date, several evaluations of the KidsTime Workshops have been carried out, using a variety of methodologies, the findings of which are summarised in the following paragraphs. As a general rule, individual feedback forms are completed by the adults and children after each workshop. A study of the German KidsTime Workshops found that [19]:
95% of families submitting evaluations stated they benefited from attending the workshops and wanted to continue attending.
All family members stated they had learned something new about mental illness at the workshops and that the workshops helped them to talk about mental illness within and outside of their families.
Watching and reflecting on the children’s drama film, as well as the multi-family group format (particularly the feeling of solidarity among families) were viewed as helpful catalysts in enabling the open discussion of issues that may have been perceived as being too “shameful” to talk about outside of the group.
Similar themes were present in the children’s feedback; however, the most important impact for children was the sense of freedom they experienced in being able to return some of the responsibility to adults they could trust and talk to and in connecting with adults in a more positive way, challenging their previous thoughts and feelings about adults and professionals coming into contact with them and their families. The feedback especially highlighted how children experienced KidsTime Workshops as a secure framework within which they could act more freely [19].
\nIn England, an evaluation by the Anna Freud Centre for Children and Families found that the workshops increased understanding of mental illness, improved parent-child relationships, reduced feelings of fear, shame and isolation and boosted confidence in children and young people [2, 11]. Due to the nuances and the number of factors at play within the workshops, Our Time has found that case studies are a useful tool in understanding the impact of these interventions on children and families. An analysis of recent family case studies in England has identified the following key themes: Rise in confidence among children and young people, improved relationships within and outside of the family, making new friendships and increased knowledge and understanding of mental illness.
\nFindings from the different evaluations undertaken to date demonstrate that the strength of the workshops lies in their ability to facilitate communication and positive relationship building within and outside of the family, providing effective peer support for children and parents and, in tackling the shame, stigma and misconceptions surrounding mental illness, reducing feelings of fear and isolation and raising young people’s confidence and self-esteem [2, 11, 19].
\nA common barrier to setting up and maintaining a KidsTime Workshop is securing funding for a preventative model. The fundamental rationale for the workshops is to prevent young people from developing psychopathology themselves. However, funding for support for people who do not have a formal diagnosis is almost impossible to obtain within curative and risk-oriented medical systems, which are often the result of restrictive fiscal policies that will only allocate funding for critical interventions. However, what such policies and approaches fail to address is that, without appropriate universal, preventative support in place beneath thresholds for critical services, the demand for these services will continue to grow at an alarming rate, leading to significantly increased costs in the medium to long term.
\nIn relation to children of parents with a mental illness, the stakes are high. An estimated 3.4 million children and young people in the UK live with a parent with a mental illness. Without help, 70% (3.1 million) of these children will go on to develop mental health problems themselves at huge expense to the public purse [6]. For example, if a quarter of these young people develop depression by 2021, the projected cost to the UK government could be up to £470 million [5]. This is the tip of the iceberg—depression is just one of many ill consequences likely to befall this group. Other potential long-term consequences include disrupted education, restricted peer relationships (due to carer role), financial hardship, potential separation from parents, stigma, future physical and mental health problems, greater risk of suicide, unemployment, marital problems and crime and violence [2, 3, 4, 5, 10]. Consequently, without intervention, the long-term prospects are bleak, and the cost of doing nothing could amount to £17 billion per year in the UK alone [20]. In comparison, the cost of preventative approaches is relatively small. To give an example, in England, it costs ~£2000 per family, per year, to take part in a monthly KidsTime Workshop, while an initial assessment by Child and Adolescent Mental Health Services costs £700 per child, prior to any intervention taking place.
\nWhile the case for prevention is clear, support for early intervention requires a culture shift across the health, social care and education system, which can only be achieved through policy change and the allocation of appropriate funds to facilitate this at a more local level. This will have to include training and awareness raising for professionals who deal with children in the course of their work, including adult mental health professionals. For this reason, organisations such as Our Time are campaigning for government to count the numbers of children affected by parental mental illness and to invest in prevention to help break the cycle of intergenerational mental illness.
\nThis chapter has provided an overview of the workings and impact of multi-family approaches in supporting families affected by parental mental illness, using the KidsTime Workshops as a case study example. It has described the benefits of a more informal and non-therapeutic, multi-family intervention in helping children and families to understand and communicate about mental illness. As well as highlighting the potential risks associated with having a parent with a mental illness, it has demonstrated the power of receiving a clear explanation in helping children to understand and cope with their situation. Access to a supportive and non-judgmental environment where families can share experiences and talk to others in the same situation has been identified as a key protective factor for children and their parents, as illustrated in the feedback and testimonials from families listed in this article. Recommendations for professionals and practitioners working with children and young people affected by parental mental illness are to:
Notice these children, and recognise the role they play in caring for their parents.
Recognise and acknowledge that they are experts in their family situation, with often very advanced knowledge and insight into their parent’s illness and/or behaviours.
Provide children with clear explanations of their parent’s illness and what is happening to the parent and for the reasons behind decisions (e.g., when a parent is hospitalised).
Recognise that these children may fear or reject traditional interventions. Ask children what would help and listen to what they have to say, so that any support offered does not undermine or further isolate the child or young person.
Those interested in trialling multi-family interventions for children affected by parental mental illness should pay attention to the following principles:
Create a relaxed, safe and supportive environment that is welcoming for parents and children.
Avoid imposing traditional hierarchical structures, i.e., of professional and patient, and, instead, encourage staff to adopt the role of a friendly helper to facilitate trust and communication within and outside of the family.
Provide clear age-appropriate explanations for mental illness.
Use a range of creative methods, such as drama, to engage and make it a fun experience for children, to enable exploration of the subject from different perspectives and to encourage reflection.
Further information and guidance about the KidsTime model, including how to set up a KidsTime Workshop, is available on the Our Time website: www.ourtime.org.uk.
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