Chronic illness Lindsey Gardner, Leslie Wells, Kimberlyn Jaggers - - PowerPoint PPT Presentation
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
Lindsey Gardner, Leslie Wells, Kimberlyn Jaggers
Diseases that used to be terminal are now
The prevalence among children in the
Diseases are categorized as chronic
Chronic illnesses that are present for an individual’s
Asthma Diabetes Sickle Cell Disease
Chronic illnesses that require extended treatment
Cancer Cystic Fibrosis Renal and Heart Disease HIV
Chronic illnesses associated with an inpatient
Traumatic brain injury (TBI) Spinal cord injury (SCI) Cerebral palsy (CP) Spina bifida Bronchopulmonary displaysia (BPD) Cerebrovascular accident (CVA) Burns Orthopedic problems Neurological problems
Child or teen may have limited contact with peers
Bring up issues of pain, grief, loss, and complicated
Need ongoing education about their condition Face extended and/or repeated hospital
Rehabilitation stays are often more continuous,
Psychosocial support becomes an important part
Research has shifted from models of
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
Social and Emotional Issues
Loneliness, decreased self-esteem, and PTSD
Resiliency
The hardiness of children and identify few risks to
Chronic illness is a potential stressor in the lives of
Developmental level is important to
Social support, coping skills of the child,
Family variables, such as concurrent
Psychosocial Interventions
Target family members’ understanding of the
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
Coping strategies important to coping with pain,
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
Why is chronic illness important to child life?
Impact on parents Impact on siblings Grief and loss Common diagnoses Disruption of typical development
Edison, 2013 Weiner, 2012
Scholastic, physical,
Focus on:
Preparation Clearly identifying
Reinforcing the use of
Providing info
Participation= control
Sense of
Children need to
Dependency Coping Skills Actions can support
Dependent of
Restrictions Overprotectiveness Role in treatment
Advocating:
Privacy Inclusion Responsibility
Identity formation Re-evaluation of
Self-exploration Identity Boxes Journaling
Clip Art
Peers may retreat:
Cancer is
Stigma HIV/AIDS
Education is key Contact with other
Technological
Physical Changes Perception Self-Esteem Body as defective Burns Body image activities:
Outline drawing Mirror projects Day of beauty Muscle man workout Box activity Scratch art drawings
Goal of therapeutic relationship: “engage children
Self-expression Developmentally Appropriate Education Regarding Illness Preparation Play Coping Skills Problem-solving Skills Goal Setting and Action Plans Adherence
Help children express thoughts, concerns
Creative aspect Expression of anger Encourage self expression
Letter to illness Sentence completion Feelings Garden
Education is key It is best for parents to present diagnosis
Withholding info can effect relationship Language is key
Ex. cancer cells
Information should be repeated and process
Allow children to ask questions Level of understanding should be measured
Consider need for preparation over time Population with cognitive deficits Ranchos Los Amigos Cognitive Scale Education for children with cognitive
Multisensory approach Remove Distractions Don’t expect excellent verbal recall Document teaching Use concrete language Rule Oriented Repetition Shorten teaching sessions
May not be enjoyable at first Goals:
Patient will demonstrate enjoyment in play Patient will identify one activity of interest
Post-Traumatic Play Adaptive Play Family Activities Stimulation Activity Alternatives
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
Helping Hands Distraction and imagery for children with
Should be viewed as a process Steps:
Establish realistic goals & steps to achieve
Focus on “right now” when life expectancy is
Help them move forward Child and family should take the lead on goal
Handout w/ steps or building blocks
Medical staff should be informed of goals &
Adherence to treatment regimens Families are equal team members Benefits vs. Inconveniences Strategies can be either behavioral or
Open communication Journaling to discuss what is/isn’t working Re-evaluation
New sense of “normalcy” Advocating for:
School and social reintegration Normalization Discipline Return to routine Household responsibility
Schedules, rituals, & routines Support for parents
Acknowledgement
Assessment of
Support Journey Maps
Amin, 2012
Healthcare team Cotreats Child life involvement:
the session
holiday
therapist facilitates a difficult skill
Clear sense of goals for particular patient
Relationships Establish trust Can cross professional boundaries “Meaningfully related, but professionally
Over involvement can create
Focus on independent use of adaptive
Self-care
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