Abstract
Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent’s life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent’s grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent’s circle is presented.
Case Introduction
B, neonate born premature at 24 weeks, was the second child of a pair of Singaporean parents in their late 40s. Both parents shared a close relationship with their older 13-year-old son, A. They had not been actively trying for another child when B was conceived, but nevertheless viewed the pregnancy as a miracle from God.
On Day 11 of life, B turned acutely unwell with spontaneous ileal perforation. B’s parents were hesitant about surgical repair, wishing that “all this suffering would just stop.” They also reasoned that in the small chance that B survived, he would have severe neurocognitive impediments and an ileostomy. They were concerned that A would eventually be burdened with looking after a child with high care needs, given both parents were advancing in age.
After long discussions with the medical team, B’s parents agreed to proceed with surgery, with the caveat that a care plan be put in place, for B not to be subjected to cardiopulmonary resuscitation or inotropes. In the event of impending demise, the family requested to carry their child and take a family photo.
B’s parents were reluctant to involve extended family in his care, choosing not to reveal his birth for fear of causing anxiety and having to manage pressure from the external family. They struggled to tell A, whom they described as their “first love,” about how critically ill his brother was, wanting to “protect him at all costs” from the widely fluctuating course of an extremely premature child. A was hence only informed about how ill B was when the latter was in the operating room.
B’s postoperative course was stormy. He had profound hypotension, and developed large bilateral intraventricular hemorrhages. Furthermore, mechanical ventilation proved difficult given severe chronic lung disease. His poor prognosis was conveyed and palliation was offered.
On compassionate grounds, A was allowed into the Neonatal Intensive Care Unit (NICU) to meet his brother for the first, and likely last, time. However, the previously cheerful teenager thereafter became moody and withdrawn. He locked himself in his room, reading about B’s medical issues. He repeatedly told his parents that he would hate them “forever” if they gave up on B, voicing that he would take the responsibility of caring for B when he grew older.
Distraught, B’s parents were unable to “choose between siblings,” and eventually opted to continue full active management of B, including inotropic support and a further surgery. A was subsequently involved in preplanned family updates at his family’s request and was seen to open up with both his parents and the medical team over the course of months.
B’s story had a good outcome; he slowly stabilized and is now a cheerful toddler with mild neurodevelopmental delay; his ileostomy was eventually reversed. Regardless, his case raised questions among the medical team, including whether more effort should have been taken on the part of the medical team to include adolescent sibling A in the goals of care discussion for B.
The Effect of a Critically Ill Child on the Emotional Well-Being of an Adolescent Sibling
Adolescence is a time of changes in biological functioning, cognitive capabilities, and relationships between family and peers. 1 The adolescent develops complex thoughts and reasoning, 2 with more frequent high-intensity emotions than adults. 3 The more emotionally volatile adolescent may hence have altered perceptions of their critically ill sibling. For example, older siblings of a child with cancer experience anxiety, insecurity, loneliness, and traumatic stress to a greater extent than a younger sibling. 4
Furthermore, parents inevitably focus more energy on the well-being of the sick child. In turn, they may at times overlook the needs of their adolescent, 5 especially as he may be perceived as being able to fend for himself. The significant decrease in accessibility to both the ill sibling and parents markedly influences the adolescent.4,6 Without open family communication, they may lack the opportunity to share their emotions related to their sick sibling, resulting in feelings of alienation and rejection. 7 Other unmet needs identified in adolescent siblings of oncology patients include the need for treatment information, dealing with difficult emotions, a relationship with their unwell sibling, recreation, sibling-specific support, and the allowance to be a child.8,9 Adolescent siblings may also seek a balance between their own interests and being involved in their sibling’s care.10,11
When needs are not met, an adolescent’s response to the conflict is typically to withdraw; this may lead to the spiraling of grief and guilt. 12 They may struggle with social competence and academic performance. 13 Beyond these internalizing behaviors, the adolescent may also demonstrate externalizing behaviors, such as anger. Most behavioral difficulties improve over the first year after the sibling’s diagnosis, but may resurface or worsen with the sibling’s deterioration or demise. 14
Upon the death of their ill sibling, adolescents may cope by maintaining an emotional attachment despite physical absence. 15 Given this ongoing nature of bereavement, grief remains closely interlinked with the development of identity and relational, cognitive, and psychosocial changes seen in adolescence. 16 These constructs of grief, personal growth, and ongoing attachment form the basis of the theory of adolescent sibling bereavement, 17 and may explain why a sibling’s death may impact the adolescent’s education and career choices. 18 However, grief is personal to each adolescent; some may repress their emotions, whereas others have a more overwhelming and intense grieving process than their parents.
The Impact of Family Relationships and Communication on Adolescents
A critically ill child irrevocably impacts the entire family unit. Parents grapple with grief and exhaustion, along with physical, emotional, and at times financial, distress. 19 Beyond their own needs, they are often torn between caring for their sick child, and still being present for their other healthy children. As with B’s parents, most parents do not want to “choose between siblings,” and seek a sense of normalcy. 20
The gargantuan task of conveying medical updates to an adolescent sibling largely falls to parents. 21 However, the degree of information transfer from parent to adolescent varies between families. This is influenced by multiple factors, including the degree of psychological distress of the parent, the level of understanding and emotional maturity of the sibling, and the baseline relationships and communication methods between family members. Additionally, a child’s rapid deterioration and the presence of competing stressors (such as finances and job stability) have found to be impediments to effective communication.22–25
Each individual family member’s emotions and reactions affect the entire family unit, 26 and may be culturally sensitive. For example, Singapore is a multicultural, predominantly ethnically Chinese, Asian society. In the Asian context, the masking of emotions and burdens is a common phenomenon.26,27 A’s parents had previously prided themselves in being open about emotions and feelings, and were often openly distraught in front of the medical team. However, they were hesitant to cry in front of A. This led to A himself feeling isolated in his emotions and that his parents were “heartless” and “cruel.”
The lack of family cohesion and communication has been found to be risk factors for long-term psychosocial distress in children with ill siblings. 28 For example, bereaved adolescent siblings reported increased externalizing problems when their mothers showed less warmth, were overcontrolling, or had challenging mother–adolescent communication, reflecting the impact of family distress on parenting and communication. 29 On the other hand, expressiveness, affection, shared decisions, and problem solving are important contributors to family functioning in adversity.13,30 Family cohesion also helps to mitigate psychological distress, 31 and create positive memories while improving an adolescent’s resilience and personal growth.13,32 Better understanding also empowers adolescents to share their concerns and obtain emotional support, which ultimately may positively influence bereavement outcomes. 13
Strategies to Involve the Adolescent Sibling in Palliative Care
The role of the medical team in assessing sibling needs
The Standards for Pediatric Palliative care define the unit of care as the child and family, and hence advocate for early sibling care.33,34 Qualitative studies of healthy siblings of children admitted in Pediatric Intensive Care Units have cited family cohesion, distraction from the crisis, hospital visitation, and appropriate information (including preparation for distressing symptoms and deterioration) as some of these immediate needs.18,28,35 Conversely, the exclusion of siblings was found to have been a source of parental dissatisfaction toward medical staff. 36
The medical team, including doctors, nurses, child psychologists, chaplains, social workers, and therapists, should hence view the entire family as part of the medical team, 37 and involve them from the beginning of their care where possible. In siblings of Oncology patients, poorer family functioning and lower parental acceptance were associated with sibling distress. It is hence crucial for the medical team to highlight and account for these contextual risk factors in adolescent siblings. 38
Many adolescent siblings perceive that the information shared with them is inadequate. 39 Additionally, siblings, such as A, rely on their interpretations of the situation when they do not have the benefit of truthful, age-appropriate information. 40 This often yields to a distorted clinical picture, 41 especially because parental proxy reports may underestimate the impact on siblings. 42 For example, A could not grasp that a child who was kicking and opening his eyes could be bed-bound; in his mind, his brother would always be able to play basketball with him despite explanations of the severity of spastic quadriplegic cerebral palsy.
Information needs should be assessed by the medical team in collaboration with the parents’ reports. Information should be realistic and honest, while maintaining hope. This requires collaborative and a concerted effort among the multidisciplinary team. Retrospectively, A could have been better supported on his initial visit to the NICU, which had proved so traumatic to him. For example, the reasons for the lines and tubes could have been conveyed in an initial meeting with A and his parents before visiting B.
Although an adolescent sibling may initially be reticent, 12 open communication with the adolescent while their sibling is still alive may improve bereavement outcomes. Young Swedish adults interviewed after the demise of their sibling suggested that staff should continue to offer contact throughout the phases of a child’s illness. 43 Siblings who reported not knowing what to expect when their sibling died reported higher levels of anxiety 2–9 years later compared with those who had talked to someone about what to antcipate. 44
In Oncology patients, The Sibling Cancer Needs Instrument has been validated to assess the needs of siblings between the ages of 12–24. This scale has seven domains: information; practical assistance; “time out” and recreation; feelings; support; understanding from family; and sibling relationships. 45 It has not yet been validated in siblings of children with a terminal nononcological illness, or in an Asian population. A similar validated scale, especially in local context, would be helpful in identifying the individual needs of the adolescent as well as adolescents particularly at risk. It can also be used to track how a sibling is coping with a critically ill sibling over time.
Empowering effective family communication
They medical team should recognize that the needs of the adolescent siblings are specific and different from those of their parents. They can empower parents to have direct communication with adolescent siblings where suitable, including when there is a change in clinical status of their unwell child.
This can be done through offering to sit in during a parent’s conversation with their adolescent, guiding parents with appropriate words or phrases to describe the sick sibling’s medical issues, or speaking to the adolescent on their parents’ behalf. They can also include the adolescent in legacy making. Where parents may be hesitant to convey information to their adolescent child (such as in A’s case), the medical team can share experiences of adolescents who have emphasized the importance of feeling involved in the care of their sick sibling, as well as to have conversations about mortality. 46
Parents should also be guided on anticipated changes in their adolescent child’s behavior after the deterioration or loss of their sibling, as these changes may not be as apparent to the health care team. This may include crying, separation from friends, and changes in school grades and activities. 47 This added information would help parents be more aware of and to better support their adolescent child through their grief journey.
Visiting rights
Visiting the sick sibling has been found to be an overall protective factor for adolescents. The benefits of involving the adolescent in the care of their critically unwell sibling include gradual adjustments to the physical changes of the sick child, becoming familiar with the hospital environment, maintaining bonds with the sick child, maintaining a sense of family, and gaining information. 10 For example, in A’s case, a second visit to the NICU where he was able to draw a picture of his family to paste on B’s incubator was a crucial bonding moment for the entire family. A continued to draw across the course of B’s admission as a way of communicating with his brother. He included significant events, including passing a school quiz and losing a basketball game, in these drawings. Similarly, adult siblings of children admitted to the NICU who were retrospectively interviewed expressed that any involvement they had with their sibling was a treasured experience. 48 After the sibling’s demise, photographs taken during this time are cherished memorabilia.
In Singapore, however, children under 12 are not allowed into the ICU, a policy that has been tightened during the COVID-19 pandemic. Adolescents are hence often only allowed to see their critically ill siblings to say goodbye. Viable alternatives may then be to encourage video calling, age-appropriate information leaflets, and making conscious efforts to involve the adolescent in web-based family conferences.
Involvement of the adolescent’s community
The availability of appropriate external support outside of the core family unit, including grandparents, school teachers, spiritual leaders, and family friends, may help to minimize the negative impact of parental stress and unavailability on well siblings. 49 School-based support from friends and teachers has been positively associated with grief-associated growth. 50
However, particularly in Asia, some parents may be hesitant to disclose how sick their child is to the wider community, a Confucian value of maintaining harmony. For example, A’s family had elected against disclosure of B’s birth to their extended family as they feared causing stress and anxiety. It was only when A’s parents were unable to cope with his emotions that they involved trusted family friends. Notably, it was finally after discussion with a leader from the adolescent’s church that A began to come to terms with the situation.
Local support groups
Toward mid-adolescence, teenagers tend to replace their parents with peers as trustworthy addressees for personal problems. Peer relationships provide the adolescent with new perspectives through which they can co-construct ideas and receive validation, and this remains true in the grieving process.51,52 However, the adolescent may also find it challenging to explain his family situation to his peers. Social withdrawal should be anticipated, with some adolescents not wanting to forge close bonds as a result of being forced to understand the fragility of life at an early age.53,54
Local support groups, with adolescents going through similar experiences, can help to mediate this. Although the Rare Diseases Society of Singapore has sibling support groups for children with chronic conditions, 55 and there are support groups for bereaved parents,56,57 there are no formal support groups for bereaved siblings. However, international resources are available, and local peer support groups for adolescents facing other stressful circumstances may be viable alternatives.58,59
Conclusion
Adolescence is a challenging time, and a critically unwell sibling can alter an adolescent’s life profoundly. It is hence important to involve the adolescent in the care of his critically ill sibling and to anticipate issues specific to his information, and emotional needs. 60 A framework to involve key players in the adolescent’s circle has been presented but specific cultural aspects of the family should be taken into context.
In the Asian setting, more can be done to evaluate the needs of adolescents. This can be through establishing a validated needs-based questionnaire, or channeling resources toward local culturally sensitive support groups for siblings with critical illness.
Footnotes
Authors’ Contributions
Dr. A.S. conceived and designed the analysis, and wrote the article. Dr. L.Y.L. wrote the article. Dr. G.M.N. wrote the article.
Author Disclosure Statement
Drs. A.S., L.Y.L., and G.M.N. have disclosed no financial relationships relevant to this article. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. No funding was received for this article.
Funding Information
No funding was received for this article.