Information for Mental Health Providers Working with Children who have Chronic Illnesses

This chapter reviews information about chronic medical problems and provides a definition of chronic illness. A philosophy of care, based on a systems approach for children with chronic illnesses is presented. Developing care plans aiming to integrate the child within his or her school and broader community are presented. Roles for mental health providers and ideas for promoting child resilience are outlined. Information in the chapters in this eBook is reviewed to orient the reader to upcoming material in this eBook.

Chapter 2 reviews research in key areas that are resilience factors for facilitating child coping with a chronic illness. For instance, positive social functioning is a component of successful adjustment that has a positive impact on developmental outcome. Enhancing the child’s strengths and improving peer and family support are strategies for improving child functioning and resilience. Research on the effectiveness of support groups is presented and online support interventions are a method for reaching children who do not have access to support groups in their area. Helping children cope with grief and adjust to loss – associated with their chronic illness – is an area where mental health providers should develop skills, if they are interested in working with children who have chronic illnesses. Learning about interventions for improving emotional and behavioral functioning, especially coping with anxiety and depression in children, are other areas for skill-building.

This chapter presents ideas for enhancing the emotional and behavioral functioning of children with chronic illnesses. Cognitive behavioral techniques and environmental change are reviewed as interventions commonly used in the field. Case studies, developed for use in this chapter, are used as a teaching tool, to review interventions. Three different cases are presented and these include psychotherapy or counseling for a: (1) teenager with encopresis and anxiety, (2) a boy with nut allergies, and (3) a girl with renal failure. The focus of these cases is describing interventions and the counseling process in a manner that provides ideas for various types of mental health providers working with children who have chronic illnesses.

This chapter introduces the idea of developing written care plans to assist school personnel in learning about how to intervene and handle child chronic illnesses in the school setting. Critical components of care plans, including ideas for emergency planning, are reviewed. In addition, resources for teachers, ideas for improving collaboration and communication with teachers, and ideas for working with schools are presented. School reintegration after an extended hospital stay can be challenging and research highlighting ways to make school re-entry successful are delineated. Case studies, with outlines of school care plans and interventions, are presented at the end of the chapter.

This chapter reviews ideas for assessment of children’s school functioning and adds information about written care plans in the school setting, which are termed Individual Education Plans and Section 504 plans in the United States. Literature on school planning for children with special health care needs is reviewed and roles of the school psychologist are outlined. Resources for special education teams, to enhance knowledge about child chronic medical conditions, are presented.

This chapter addresses adherence, which is loosely defined as following the medical regimen, for a child with a chronic illness. Children with chronic illnesses often have complex regimens. They and their parents can benefit from support for taking their medications as well as for following dietary and exercise recommendations. Use of rewards and reminder notes and calendars can be helpful tools for improving recall of the multiple steps of a medical regimen. Adolescence may be a special risk period for poor adherence and careful monitoring of adherence at this stage, and referral when needed, can be supportive for families and the adolescent him- or herself. Education and improving the health knowledge of the child and his or her parents and encouraging a team approach may be other factors that strengthen adherence to complex medication schedules and medical regimens.

This chapter reviews literature associated with parent adjustment when a child has a chronic illness. This is an important topic, because an ill child is a terrible stressor for the vast majority of parents. There are, of course, the emotional strains, as well as the burden of providing care and the financial burden that can come with the child’s chronic illness. Parental reactions can trigger child reactions, such that supporting the parent is a means of supporting the child as well as the family unit. Parent anxiety, depression, and somatic complaints can impact child adjustment and emotional functioning. Being a single parent can also be a risk factor. Social and financial support may be resilience factors for parents, whereas poor family functioning prior to the onset of the child’s illness is a potential risk factor for smooth family functioning. A multifaceted plan for supporting parents, the family and child, may be a protective factor for ensuring positive outcomes if a family had been coping poorly before the onset of the child’s illness. Continuing to monitor parent functioning is an important goal for ensuring that parents have the support they need to deal with the significant stress of a child’s illness.

Siblings of children who have chronic medical conditions can experience both positive and negative outcomes related to their brother or sister’s illness. For example, siblings can experience increased empathy and compassion. Their bonds with their brother or sister typically are affectionate. The downside is that siblings can feel isolated and “in need” of parental attention. Improving support from parents, school staff, and peers, as well as allowing siblings to express their feelings are positive techniques for improving their coping. Interventions to educate and support siblings appear to have a beneficial impact on sibling functioning and remain an area for future research.

The transition to adult health care providers and specialists can be very stressful for young adults who have essentially “grown up” with their pediatric health care team. Respecting the close bonds that can form between pediatric providers and their young patients and families is critical. Involving the pediatric team in the transition planning and process is important and can facilitate both child success and the education of the adult care providers. Allowing youth to learn about adult care and perhaps even having a practice visit with an adult provider can facilitate their transition process. Others have suggested that having transition clinics may be a method for providing health care for this special age group. Having a portable medical summary with contact information for reaching the pediatric care team is recommended. Helping the young adult understand the “ins and outs” of his or her insurance plan and assisting him or her as he or she assumes responsibility for self-management are other actions to assist the young adult. When adult providers adopt a family-centered as well as a patient-centered model of care they can address concerns of the family unit. This orientation may be helpful as the family and young adult are a long-standing team and may be coping with the transition to adult health care as a unit.

This brief chapter summarizes information from theory and research guiding the development of this book. The notion of a systems-based approach, that considers the child and his or her family members “in context” or as influenced by factors in their life settings underlies a family-centered and patient-centered approach to care, because it may allow mental health providers and members of the medical team to meet the child, parent, and other family members “where they are” in terms of coping with the child’s illness and adjusting their lives to have new meanings and roles that incorporate the child’s coping and resilience. The evidence or research base for provision of care that supports child functioning and positive development is growing and mental health professionals can receive excellent guidance from this literature. Utilizing information from the literature, networking with the medical team, school, and family can be key tools for the mental health provider to support the child.