Chronic illness Lindsey Gardner, Leslie Wells, Kimberlyn Jaggers
Introduction Diseases that used to be terminal are now being considered chronic The prevalence among children in the United States is 10-30% Diseases are categorized as chronic illnesses if the duration of the illness is three months or longer or if they cause hospitalization for more than one month
Typical Chronic Illnesses Chronic illnesses that are present for an individual’s entire life: Asthma Diabetes Sickle Cell Disease Chronic illnesses that require extended treatment and have an uncertain outcome and/or degenerative processes: Cancer Cystic Fibrosis Renal and Heart Disease HIV
Typical Chronic Illnesses Chronic illnesses associated with an inpatient rehabilitation programs: Traumatic brain injury (TBI) Spinal cord injury (SCI) Cerebral palsy (CP) Spina bifida Bronchopulmonary displaysia (BPD) Cerebrovascular accident (CVA) Burns Orthopedic problems Neurological problems
Rehabilitation Programs Child or teen may have limited contact with peers and increased contact with adults Bring up issues of pain, grief, loss, and complicated emotions Need ongoing education about their condition Face extended and/or repeated hospital admissions Rehabilitation stays are often more continuous, while chronic illness admissions are more repetitive Psychosocial support becomes an important part of the child and family’s healthcare regimen
Chronic Illness Research Research has shifted from models of maladjustment to models considering the individual and familial factors that promote adjustment (Hicks & Havitt, 2009) Toward a view of typical families dealing with atypical circumstances Adjustment difficulties Difficulty with peers, impaired social functioning, internalizing problems such as depression and anxiety, externalizing problems such as behavioral difficulties and oppositional tendencies, and concerns related to body/self image, dependency, withdrawal
Chronic Illness Research Social and Emotional Issues Loneliness, decreased self-esteem, and PTSD Resiliency The hardiness of children and identify few risks to mental health associated with their chronic conditions Chronic illness is a potential stressor in the lives of children and families, adaptation is continuous over time, and coping strategies are important in facilitating adaptation
Chronic Illness Research Developmental level is important to adjustment to chronic illness Social support, coping skills of the child, service support, characteristics of the condition and potential to compromise developmental tasks Family variables, such as concurrent stresses, family relationships and parental stress
Chronic Illness Research Psychosocial Interventions Target family members’ understanding of the illness and treatment Development and coping skills Effective techniques for facilitation of coping Play therapy, bibliotherapy, therapeutic storytelling, art therapy, normalizing the distress associated with chronic conditions, and minimizing the impact on typical childhood experiences
Chronic Illness Research Coping strategies important to coping with pain, symptom management, and treatment related procedures Cognitive behavioral techniques, cognitive coping strategies, such as self talk and thought stopping, and relaxation and imagery techniques Social support interventions Support groups, school re-entry programs, camps for children with chronic conditions, filial therapy, and support for all family members Adherence to medical regimes These interventions should focus on the provision of knowledge, acquisition of procedural skills, and on a mutually negotiated treatment plan between the family and the healthcare team
Significance to Child Life Why is chronic illness important to child life? o Chronic illness in children is well documented à psychosocial needs should be assessed (CHILD LIFE) o Common challenges for children with chronic illness include: o Impaired social functioning o Internalizing/Externalizing problems o Concerns with self-image and dependency o Stressor and potential risks on the family o Family Perspective
Impact of Chronic Illness Illness characteristics of impact (Duration, frequency, intensity) Common emotions experienced: o Denial o Stress o Anger o Isolation o Guilt o Uncertainty o Sadness o Fear o Loss o PTSD o Possible shame
Family Impact Impact on parents Impact on siblings Grief and loss Common diagnoses Disruption of typical development Edison, 2013 Weiner, 2012
Child Life Specialist’s Role Working with children with a chronic illness, child life will promote: o Education o Development o Preparation o Mastery o Play o Competency o Coping o Autonomy o Problem-solving o Identity o Goals and aspirations o Peer relations o Adherence to treatment o Body image (self-care) o Support (family, therapeutic, o Adaptation social, community, school) o Self-expression o Normalcy
Promoting Developmental Tasks Mastery Competency Scholastic, physical, Sense of or creative accomplishment accomplishments Children need to Focus on: succeed Preparation Dependency Clearly identifying Coping Skills expectations Actions can support Reinforcing the use of of refute coping skills competency Providing info Participation= control
Autonomy/ Identity Independence Dependent of Identity formation parents Re-evaluation of Restrictions self Overprotectiveness Self-exploration Role in treatment Identity Boxes process Journaling Advocating: Privacy Inclusion Responsibility Clip Art
Peer Relationships Body Image Peers may retreat: Physical Changes Cancer is Perception contagious Self-Esteem Stigma HIV/AIDS Body as defective Education is key Burns Contact with other Body image activities: chronically ill Outline drawing children Mirror projects Technological Day of beauty advances Muscle man workout Box activity Scratch art drawings
Facilitating Adaptation Goal of therapeutic relationship : “engage children and members of family to develop adaptive strategies to meet the challenges of their situation, and by doing so, to prevent or ameliorate the difficulties they face.” Self-expression Developmentally Appropriate Education Regarding Illness Preparation Play Coping Skills Problem-solving Skills Goal Setting and Action Plans Adherence
Self-Expression Help children express thoughts, concerns & feelings Creative aspect Expression of anger Encourage self expression Letter to illness Sentence completion Feelings Garden
Developmentally Appropriate Education Regarding Illness Education is key It is best for parents to present diagnosis information Withholding info can effect relationship Language is key Ex. cancer cells Information should be repeated and process should be interactive Allow children to ask questions Level of understanding should be measured
Preparation Consider need for preparation over time Population with cognitive deficits Ranchos Los Amigos Cognitive Scale Education for children with cognitive challenges should be modified: Multisensory approach Remove Distractions Don’t expect excellent verbal recall Document teaching Use concrete language Rule Oriented Repetition Shorten teaching sessions
Play May not be enjoyable at first Goals: Patient will demonstrate enjoyment in play Patient will identify one activity of interest that can be completed at current level of function Post-Traumatic Play Adaptive Play Family Activities Stimulation Activity Alternatives
Coping Skills Empowering & foster resiliency Direct or Cognitive Modeling, rehearsal, and practicing Allowing for control Realistic choices Distraction, relaxation, and imagery Positive self talk, cognitive reframing and thought stopping Helping Hands Distraction and imagery for children with cognitive challenges
Problem-solving Skills Should be viewed as a process Steps: • Clarification of the problem • Identification of potential options/solutions • Evaluating the options • Deciding which option to employ • Implementing the option • Evaluation of the effectiveness of the solution • Can be taught using books or stories, modeling”
Goal Setting and Action Plans Establish realistic goals & steps to achieve them Focus on “right now” when life expectancy is short Help them move forward Child and family should take the lead on goal setting Handout w/ steps or building blocks Medical staff should be informed of goals & provide encouraging environment
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