Engaging, Involving, Educating, and Supporting Patients, Families, and Schools During Treatment
SALLY N. MERRY
ELIZABETH MCCAULEY
KEY POINTS
Engagement strategies must take into account the youth’s developmental level, the setting where depression presents, and family, ethnic, and cultural issues and beliefs.
It is hard for parents to ask for help, particularly if they did not recognize the problem and teachers or health professionals raised the issue or if adolescents sought help of their own accord.
With children, it is important to engage the parents while making the child feel included. With adolescents, it is important to engage the adolescent while making the family members feel included.
Involving young persons in decisions about treatment at all stages of management increases adherence.
Providing parents, youth, and teachers with information about depression and its management is best done both verbally and by giving written resources.
The impact on a family of living with a depressed child can be considerable. Interacting with a miserable or irritable young person is wearisome, particularly if other family members are struggling with their own problems.
Parents may need guidance to differentiate between normal teenagers’ ups and downs and a depressive disorder and the part they may play lessening or exacerbating symptoms.
Parents should be given clear instructions about what to do if they are worried about their child’s illness, including contact numbers of the treating clinician, crisis teams, or emergency services. They also need to know what to do if there has been an episode of self-harm.
Engaging with schools can take several forms, including community-based therapists providing education and consultation, policy consultation to promote a positive school climate, school-based screening programs, and actual delivery of mental health services.
School personnel need education to identify the signs and symptoms of depression, suicide risk, understand when and how to talk with a young person who seems in despair, and how to facilitate getting help.
Schools should have procedures to deal with concerns about depressed students and those at risk of harming themselves or others.
Working in specialist mental health services poses particular challenges in engaging young people. Care is often provided by a multidisciplinary team, and the severity and complexity of disorders are higher and require more of the family’s time.
Introduction
All health care professionals face the task of engaging children, adolescents, and families in treatment for depression. As highlighted in earlier chapters, depression in the young is common and costly to the community. Despite this, 50% to 75% of children and adolescents with clinically significant depression are untreated.1 In most countries the capacity of specialist mental health services is limited; schools and primary health care services have an important role in the detection and early
management of pediatric depression. The process of engagement depends on who identifies the problem, on the developmental level of the child or adolescent, and on the setting. Stigma around mental health problems may be a barrier to accessing help and developing a good relationship with clinicians trying to provide care. There are particular challenges in engaging young persons and their families who do not recognize there is a depressive disorder, or in situations where depression coexists with a physical illness. In some settings, such as schools, adolescents may seek help but may be reluctant to have their parents involved. For optimal delivery of care for depressive disorders, children and their immediate family should all be involved in the care plan. In this chapter “parent” is used to mean parents, guardians, and caregivers; “child,” “youth,” and “young people” are used to mean both children and adolescents unless specified otherwise.
management of pediatric depression. The process of engagement depends on who identifies the problem, on the developmental level of the child or adolescent, and on the setting. Stigma around mental health problems may be a barrier to accessing help and developing a good relationship with clinicians trying to provide care. There are particular challenges in engaging young persons and their families who do not recognize there is a depressive disorder, or in situations where depression coexists with a physical illness. In some settings, such as schools, adolescents may seek help but may be reluctant to have their parents involved. For optimal delivery of care for depressive disorders, children and their immediate family should all be involved in the care plan. In this chapter “parent” is used to mean parents, guardians, and caregivers; “child,” “youth,” and “young people” are used to mean both children and adolescents unless specified otherwise.
ENGAGING AND SUPPORTING CHILDREN AND ADOLESCENTS
The way in which youth and their families may be engaged in the assessment and treatment process depends on their developmental level. Evaluation is described in detail in Chapter 3.
CHILDREN
In clinical practice, children are seldom seen without a parent, and depression often arises within the context of family or social difficulties (see Chapter 2). Clinicians therefore have the task of engaging with both the child and family members. It is important to have strategies to ensure the child is included in all stages of the assessment process and involved in the management plan. Communication with the child depends on the child’s developmental level and his or her verbal and cognitive ability. The language and approach must be appropriate to the child’s age (e.g., toys or drawings in younger children). Time available varies from setting to setting, so techniques need to be tailored to the child and the situation. Here are some tips that often facilitate engagement:
Start engagement at the first contact—greet the child specifically.
Early in the consultation talk to the child about things they are interested in (e.g., friends, siblings, activities, school, pets, birthdays).
Ensure the child is brought into the conversation regularly during the interview.
Translate information for the child in an age appropriate style. Check that children understand what you are talking about.
Ask children if they have questions.
ADOLESCENTS
Adolescence is a time when young people move from dependence on parents to independent functioning. This stage is accompanied by a greater affinity for peers and an increase in novelty seeking and risk taking. Cognitively, adolescents move to increased abstract thought, although brain development, and accompanying judgment, is not complete until the mid-20s. Adolescents and those around them have to adjust to rapid developmental changes with negotiations over levels of independence that typically continue throughout adolescence.
To support the need for independence and to establish a working relationship, it is important to spend time alone with the adolescent. This allows for a more accurate monitoring of mood and of risk behaviors that may be associated with mood disorders, such as substance abuse, suicidal thoughts and behaviors, and sexual activities. Parents should also be given time alone with the therapist and be kept informed of progress.
There are strategies that can be used to engage depressed adolescents and their families. Adolescents report that they appreciate it if clinicians take an interest in them, rather than just in their problems. The HEADDS interview (mnemonic for Home, Education/employment/eating, Activities, Diet, Drugs/cigarettes/alcohol, Sexuality/suicidality/depression/safety)2,3 (see Appendix 5.1) provides a good framework for assessing the psychosocial situation of adolescents and supports the
development of rapport. Motivational interviewing4 offers another useful set of techniques to engage adolescents and their parents and to enhance willingness to consider changing maladaptive behaviors (Table 5.1). In this approach the aim is to build on the adolescent’s own reasons (e.g., plans, desires) for making a change. Strategies include the use of open-ended questions and responses that affirm adolescents’ thoughts and feelings by reflecting their ideas back to them. For example, “If I am following you correctly, it sounds like you are feeling pretty overwhelmed by school right now.” Summary statements can also be used, such as “Just to review what we talked about today, it sounds like you are feeling pretty stressed out but are willing to try getting to bed earlier over the next couple of weeks to see if that is helpful.”
development of rapport. Motivational interviewing4 offers another useful set of techniques to engage adolescents and their parents and to enhance willingness to consider changing maladaptive behaviors (Table 5.1). In this approach the aim is to build on the adolescent’s own reasons (e.g., plans, desires) for making a change. Strategies include the use of open-ended questions and responses that affirm adolescents’ thoughts and feelings by reflecting their ideas back to them. For example, “If I am following you correctly, it sounds like you are feeling pretty overwhelmed by school right now.” Summary statements can also be used, such as “Just to review what we talked about today, it sounds like you are feeling pretty stressed out but are willing to try getting to bed earlier over the next couple of weeks to see if that is helpful.”
TABLE 5.1 MOTIVATIONAL INTERVIEWING STRATEGIES | |||||||||||||||
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As with other physical and mental health problems, a depressive disorder may impede the development of independence and sap self-confidence. Having a “mental illness” has a potentially negative influence on the adolescent’s sense of identity. A number of challenges are raised for parents as well. They may become more protective and may have a sense of guilt and responsibility; alternatively, parents can become rejecting, critical, and punitive, particularly if depression manifests itself with irritability, noncompliance, and rejection of family values. These responses may impact on the relationship with the therapist. Labeling the problem as “depression” or “depressive illness” allows the adolescent and the family to distinguish between the person and the problem. Externalizing the difficulty has the advantage that adolescents, parents, and therapist can join forces and work together to find strategies to deal with the difficulties.
Providing adolescents with information about the causes and treatment of depression allows them to participate in decisions about management. Knowing that depressive disorder is common and strategies are available to deal with it is helpful. Adolescents may find it easier to talk about stress management or motivational problems than depression as an illness. Fact sheets and websites can be used to supplement information given by clinicians. (see Resources for Patients, Families, and Teachers at the end of the chapter.)
Giving adolescents details about interventions, choice about the preferred treatment, and discussing with them and their families how family members might be involved promotes a sense of efficacy. The process of “shared decision making” improves outcome in the management of depression.5 This should then be followed by including adolescents in active monitoring of their progress (e.g., through the use of rating scales) and discussing with them options at all stages of therapy. Here are some tips to facilitate engagement with adolescents (see also Chapter 3):
Greet the adolescent specifically.
Be friendly.
Give adolescents and families some time separately with you.
Explain confidentiality and its limits clearly during the first interview.
Make sure you use language that is developmentally appropriate.
Start by taking an interest in the adolescent generally, not just in their problems (ask about school, hobbies, and friends).
Develop the treatment plan jointly with the adolescent.
Give choice where possible.
Don’t try to be what you are not (e.g., “cool”—if you are not).
Avoid medical jargon.
Talk about their strengths, not only about difficulties.
TALKING ABOUT SUICIDE AND SELF-HARM
The risk of suicide must be monitored in all young persons who are treated for depression, particularly in those who are on antidepressant medications (see Chapter 14). Because of the evidence that media coverage of suicide acts can increase the risk of completed suicide, there has been concern that raising the issue of suicidal ideation and behavior in a clinical context may increase risk. In fact, clear evidence indicates that asking about suicidal ideation and behavior in this context does not increase risk.6
Managing risk while maintaining a good relationship with the young person can be challenging, and it is best done collaboratively with the youth. Asking about the context of the risk, and asking the young person what precipitated the thoughts or actions is helpful. It is also worth asking about times when the young person had thought about self-harm or suicide but had not acted on it. Finding out the strategies they have used themselves can be applied to support the youth’s sense of their own strengths, and to prompt discussion about other methods that could be used to reduce self-destructive behavior. It may be helpful to develop an action plan that the young people can use if they feel their risk has increased. This could include things the youth could do and supportive people the young person could approach. Involving families in managing risk is discussed later.
USING TECHNOLOGY TO ENHANCE ENGAGEMENT
Young people use mobile phones and the Internet extensively to communicate with each other, and there is increasing interest in their clinical applications. Clinicians can take advantage of text messaging or e-mail to remind about appointments, give prompts about tasks set in therapy sessions, and get quick progress reports from the young person, among others. Using technology for these purposes is in its infancy but is bound to have a multitude of applications and to become more important.
ENGAGING AND SUPPORTING FAMILIES
Engagement and response to treatment are substantially predicted by family factors. There are high rates of psychopathology (e.g., maternal depression, paternal alcohol abuse) in families of depressed children and adolescents and also high rates of family conflict7 (see Chapter 2). Addressing these factors has the potential to improve the overall situation of the depressed child, strengthen engagement, and prevent recurrences.8 The way in which families are involved depends on the developmental stage of the child and on the setting in which the presentation occurs. Parents may bring the child for assessment and treatment without telling the child of their concerns. Depression may be uncovered in the context of a consultation for another disorder. In primary care settings, for example, most depressed young persons present with somatic symptoms.9 Adolescents may access care on their own and may or may not want to involve parents. Differing approaches are clearly needed for these differing scenarios.
Parents and other family members have a valuable contribution to make. They can be engaged as active partners by asking to provide information on the young person’s symptoms, monitor progress (e.g., by completing rating scales or questionnaires), support therapeutic interventions, and help the child to watch for signs of relapse. Support for parents to help them address unresolved conflict in the family or negative approaches to therapy by one or more family members may also be critical for a positive outcome (see Chapter 10).
A number of options are available to consider if parents do not recognize depression or the need for treatment. In schools, youth clinics, and where the young person is able to give informed consent, it may be possible to provide care for the youth without involving the parents. This limits therapeutic options, particularly where family discord is an issue, but it gives the young person access to support and care. In other settings, for example where there are fees for services, it may be difficult to provide care without involving the parents. Contacting the parents in a nonconfrontational way, talking to them about concerns about their child, and exploring their own perceptions of the situation may help forge an alliance and may resolve the situation. If this is not the case, it is important to be clear about the consequences of not addressing the problem. If parents remain unconvinced, the risk to the child must be weighed. If there is serious risk of harm or depression is severe, it may be necessary to inform the relevant child protection services; in extreme cases, involuntary treatment may be required.
Where parents want their child—or more often teenager—to have treatment and the child does not want it, it is useful to start by seeing the adolescent alone to find out their perceptions of the situation and to discuss with them the concerns of those around. Sometimes adolescents have a plan to address the problem and it may be worth supporting this, trying to get their agreement to review success or otherwise with their parents or the therapist. After discussing the situation, adolescents may be prepared to attend a couple of appointments, to see the therapist elsewhere, or to attend a different facility. Alternatively, it may be possible to coach parents to provide support.
With pre-pubertal children, parents are in a particularly good position to help, which should include monitoring diet, exercise, and sleep—encouraging sensible behaviors in these areas—helping resolve immediate stressors like bullying at school, reducing family conflict (e.g., by refusing to fight with the child, by keeping disagreements between themselves out of the family arena), and by spending positive time with the child. This could include playing a favorite game, reading stories, or taking them on outings.
Many teenagers report they would like to spend more time with their parents, and teenagers who are depressed need support. Direct questions such as “How do you feel?” or “How was your day?” often lead to noncommittal answers, but teenagers, like most of us, like people to take an interest in them. This may be best accomplished less directly (e.g., by parents offering a drink and a snack and sitting and having one themselves). Chatting about general things often provides an opening to the teenager to talk about what is troubling them.
CHILDREN IN OUT-OF-HOME SITUATIONS
Involvement of parents in situations where the youth is a ward of the state or is in foster care is a complex issue. The extent and type of involvement by the parents should be decided depending on the individual situation, keeping in mind that the welfare of the young person is paramount, and the child’s views should be taken into consideration in any decisions. The first priority is to ensure the young person is not at risk of harm, particularly if there is a history of abuse. If contact with one or both parents is very distressing for the child, or if contact puts the young person at risk, then involvement of the parents may be limited. These decisions should not rest on the shoulders of the therapist alone but involve liaison with child protection services, the wider family group where possible, and at times the juvenile justice system. In some countries such as New Zealand, provision is made for “family group conferences,” which afford a forum for family members and professionals from the health, child protection, education, and justice systems to work together and find solutions. It is helpful to have a specific person to provide support for the child and argue the case for them, either formally—through a “counsel for the child”—or informally.
COMMUNICATION
It is hard for parents to ask for help. It is even more difficult when they have not recognized that there is a problem and the issue is raised by a teacher, health professional, or where an adolescent has sought help of their own accord. As a rule of thumb, with children it is important to engage the parents while making the child feel included. With adolescents it is important to engage the adolescent while making the family members feel included. Greeting all family members specifically, setting up clear expectations at the beginning of a consultation, providing separate time for children
and their parents, and checking with parents about their own well-being (being careful not to imply that parents are the target of treatment) are all strategies that can be used to make family members feel valued and supported. Adherence to a management plan is unlikely unless all involved think the plan is a good one. It is therefore important to reach agreement with the young person and their parents about the best way forward. Where there is disagreement, it is critical to try and resolve this. Even in cases when adolescents are seen on their own, it is advisable to see one or both parents from time to time (if at all possible with the knowledge and permission of the patient), it is advisable to see one or both parents from time to time. This can take just a few minutes at the beginning or end of the consultation, with or without the adolescent present. The aim is to keep parents informed, facilitate communication, clarify issues, and to validate adolescents’ reports—not always realistic or truthful.
and their parents, and checking with parents about their own well-being (being careful not to imply that parents are the target of treatment) are all strategies that can be used to make family members feel valued and supported. Adherence to a management plan is unlikely unless all involved think the plan is a good one. It is therefore important to reach agreement with the young person and their parents about the best way forward. Where there is disagreement, it is critical to try and resolve this. Even in cases when adolescents are seen on their own, it is advisable to see one or both parents from time to time (if at all possible with the knowledge and permission of the patient), it is advisable to see one or both parents from time to time. This can take just a few minutes at the beginning or end of the consultation, with or without the adolescent present. The aim is to keep parents informed, facilitate communication, clarify issues, and to validate adolescents’ reports—not always realistic or truthful.
EDUCATION
Although parents report that receiving information about depression is helpful, adding a formal parent psychoeducation package to existing treatment has not yet resulted in improved outcomes.10,11,12 This may be related to high dropout rates because of the demands of the packages and to the practical difficulties of attending a regular program while running a home, getting to work, and dealing with a depressed child. However, ensuring that parents are informed about depression, treatment options, and involving them in decisions about management is part of good and ethical practice.13

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