Exam 1 Notes for HDFS4810 Hospitalized Child & Family
Exam 1 Notes for HDFS4810 Hospitalized Child & Family HDFS 4810
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This 28 page Study Guide was uploaded by Resham Gehani on Thursday September 8, 2016. The Study Guide belongs to HDFS 4810 at University of Georgia taught by Kimberlee Spencer in Fall 2016. Since its upload, it has received 73 views. For similar materials see Hospitalized Child and the Family in Human Development & Family Science (HDFS) at University of Georgia.
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Date Created: 09/08/16
HDFS4810: ALL Lecture and Reading Notes Combined for Exam 1 Thursday, August 18 Child Life and Children’s Reactions to Hospitalization Theoretical Foundation of Child Life Theories that Support Child Life Child Life is NOT just “entertainment and activity” Theories undergird (support) the entertaining and activity-based teaching to help the child and her/his family adjust to the hospital environment, cope with stressors and have a more positive experience Common language between professionals Play Framework: assess, plan, intervene, relate, advocate o Really want to advocate for the children because they can’t speak for themselves all the time Definition: pleasurable, child-directed, active exploration Observation of play lead interventions Piaget Child directed learning through play based on maturation and stages Assimilation: taking info from the world and fitting it into existing structures in the mind (medical setting: anytime an adult who isn’t family walks in, the child thinks they will just come hurt them) Accommodation: changing existing mental structures to integrate new information Equilibration: the basic process of human adaptation. Individuals seek a balance between the environment and their own structures of though- don’t like weird inconsistencies Stages: Stage Age Description Sensorimotor Birth-2 years Sensing and acting Preoperational 2-7 years Concept formation, symbolic reasoning Operational 7-11 years Logical operations Formal 12 years and older Abstract analogies Information Processing Computer model analogy Maturation and experience Encoding and organization Automaticity Responses affected by stress Environment (input) perception (storage) responses (output) Vygotsky Child directed based on maturation and socio-cultural experiences Zone of proximal development Scaffolding Context, context, context Attachment Ainsworth and Bowlby Parent-child relationship Secure and insecure attachment based on quality and availability of care/caregiver Based on early interactions with caregivers Social Learning Theory Child learns about the environment by actively participating in it Observational learning… modeling… reinforcement Social learning as an aid in child life: picture books, puppets, videos of peers Observational learning: the process by which a child gleens info about the environment by watching, looking… information that impacts and changes behavior… whether we continue to engage in a particular behavior is impacted by the reinforcement we get can be positive, negative or punishment Bandura & the Bobo dolls: idea with the picture books, puppets, videos is to present info that will support retention, repetition, and opportunity to imitate. So needs to be entertaining, capturing attention, accessible Emotional contagion: parental anxiety is transmitted to child Psychosocial Development o Development as dynamic and continuous process responding to issues that arise, negotiate those. Mastery of stage is not required to go to next one, but need to adequately resolve it Age Psychosocial Issues Child Life statues Interventions Birth- 1 year Trust vs. Mistrust Separation: Consistent care: “Can I trust the unfamiliar parent world?” involvement 1-3 years Autonomy vs. Separation Control of Shame/ Doubt anxiety, am I environment “Is it okay to be being punished through pay me?” 4-5 years Initiative vs. Guilt Limits on control, Maintain routine; “Is it okay to magical thinking more opportunity move, do and for independence act?” and control 6-12 years Industry vs. Concrete Opportunities for Inferiority “Can I thinking (literal) peer interaction; make it in the removed from structure and world of people normal home support; and things?” school activities connection to school 13-17 years Identity vs. Role Limits on Opportunities for Confusion “Who privacy, peer choice, self- am I? Who can I relations, expression, be?” decision making, relationships body image building; privacy Temperament Characteristics of the child-individual differences; akin to Personality in adults o Adaptability, irritability, emotionality, activity level, fearfulness Genetically influenced; expression impacted by environment Goodness of Fit: providing an environment that is supportive of child, based on individual differences Easy, difficult, slow to warm up to o Easy: adaptable, positive mood, goes with the flow, low anxiety in general, okay if routine is interrupted; anxiety can be addressed with interventions like planning, prep, expressive activities o Difficult: demanding, highly active, reactive, not easy to soothe interventions to give control, positive feedback, activities that increase self-esteem o Slow-to-warm-up: observes first, acts later August 23, 2016- Guest Speaker (separate document) August 30, 2016 Stress and Coping Theories Coping: efforts to manage demands that exceed resources Emotion-focused: get out and try not to think about it o Changing affect; manage mood; seek reassurance; reduce tension > get a massage Problem-focused: plan out a study schedule (something like that) o Come up with a few different solutions; go over in mind what you will do or say; make a plan and follow it Child life specialist: takes this into account and offer strategies that cover a number of bases; self-expression, tension-relief, pain management Family Systems Focus on family because their life changes Child-life specialist: cope with hardship, assist with those hardships and provide resources for the entire family (especially siblings) Ex: providing care, sitting with child so parents can go take a nap, go run errands, shower etc Examine the family as a whole- consists of individuals and their relationships with one another; more than just the sum of its parts: complex dyadic and triadic interaction patterns When change occurs, the WHOLE system is impacted and will try to accommodate to re-establish equilibrium Ex: how diagnosis of child affects the entire family Ecological Theory (Bronfenbrenner’s) interaction of the theories o Systems theories: thinking about the child in context of his/her family and culture o Some employers have boundaries such as not being part of the child’s life after they have left the hospital and some will say you are part of their life so keep in contact; this all depends on the employer so make sure you know so you don’t do something you aren’t supposed to o Hospital as a CONTEXT that is influencing the child and family unique cultural environment with its own rules, schedules, codes of conduct o Goodness of fit (but in a macro way) looking at how family/child respond to environment o How diagnosis impacts entire family parents, siblings, extended family o Macrosystem, exosystem, mesosystem, microsystem, the individual o Microsystem: where individuals are nested home, family, school peers, neighborhood, hospital o Mesosystem: all these interact here o Exosystem: which is nested here social service, media, family friends, parents, workplace, pharmacy o Macrosytem: they are all encased here culture, religion, law o Chronosystem: all encased here time and history o IDEA is to understand the child’s development in the context of all these interacting systems one can use this to assess vulnerability to stress in health system o Think of how CLS can advocate in the larger system for the needs of the child Grad Students Presentation- Burns (also look at handout given in class) Causes of burn: heat, cold, electricity, chemical, radiation Degrees of burn (epidermis, dermis and subcutaneous tissue) st o Superficial (1 – top layer of epidermis only) o partial thickness (2 )-skin blister, involves all of epidermis and some of dermis, may involve all of the dermis o full thickness (3 ): may extend into deeper tissues Who? o Children 0-4: scalding (pot of hot water) o Toddlers: hand burns (accidents) o Children 5+: campfires, matches, candles o Adolescents: fires, firecrackers Types of procedures o Hydrotherapy: clean wound in water (bath tub), very painful, be honest with the child o Dressing changes: very painful, dressing on burn has to be changed at least 2 times a day, could be more depending on severity of the burn o Skin grafts: help the burn recover, graft is taken from patient’s healthy skin and is meshed to cover a large wound Older child- take it from thigh or butt Complications o Severity of burn determines nutritional needs o High chance for infections o Sometimes children will need double the amount of protein Physical Development o Burn scare contractures o Amputations if burn is severe enough, child would have to get used to a prosthetic over time, depending on child’s age and developmental stage o Growth delays Mental Development o Intrusive thought o Difficulty with concentration o PTSD o Anxiety and depression o Decreased body image and self esteem (they look different so might not feel as comfortable) Social Implications o Dehumanizing o Appearance distinction withdrawal o Interference with social integration o Socialization with physical impairments Nurses/Other medical professionals o Limited mobility o Extremely painful o Acknowledge emotions: let them be upset, let them deal with their emotions o Peer interaction necessary o Need to be educated Child life o Pain management o Distraction o Self-esteem o Emotional release o Educate/inform o Parental inclusion o Outside resources o Rehearse “what happened response” to tell other people and if they have the answer ready for when people ask then they wont have to worry about it emotionally and they can just let it out and not stress about it too much What’s one way a burn could happen that would be exceptionally traumatic for a child? House catches on fire; other things that would freak you out: you lost all your stuff, imagine being 8 years old and you have burns and all your toys are gone, maybe your pet didn’t make it this can come with a whole bunch of other issues Children Hospitalized 9/1/16 -Numerous research studies have documented that hospitalization can be associated with a range of emotional and behavioral disturbances, but whether is does or doesn’t depends on a while host of factors age (9 months-4 4 years are most vulnerable), illness severity, more invasive procedures -It is possible that even stressful experiences, such as hospitalization can result in psychological benefit IF it occurs within a supportive environment that gives opportunities for mastery and self-expression, autonomy major improvements in pediatric care that make it more child-focused and family- centered have impacted outcomes for the better What we know about Hospitalized children o 2/3 of hospital stays are for newborns or infants o almost half of hospital admission for pediatric illness are routine, non- emergency: 44% are emergency o REASONS: asthma, pneumonia, head injury, poisoning o Low income families usually come thru emergency room but this is changing now due to Obama care because everyone can have health insurance Infants: o Trust vs. mistrust (hope) if they are constantly put thru painful procedures they might not trust anyone but if they know why stuff is happening they will trust them more o Younger (birth -6 months) o Based on observations o Following the infant’s cues and schedule o Feeding support o Soothing environment o Older (6-12 months) o Separation anxiety (protest despair and detachment) when parents have to leave and that nurturing person is no longer there Protest: scream and cry they don’t want you to go Despair: they are really sad that you left Detachment (hopefully never happens) but they finally realize you are gone and they don’t care anymore, they feel lonely Toddlers o Autonomy vs. shame and doubt (will) o Separation anxiety o Developmental challenges- autonomy, goal-directed behavior (kid decides he wants to get up and do something, it can’t always happen depends on severity of illness) o Needs- movement, exploration, play and socialization depending on child’s diagnosis depends on which one of these you can do, if he is in isolation he cant go socialize o Limited language favorite words are mine and no, trying to figure out what they are trying to say o Normalize environment, consistent routine (regular bed time, regular meal time etc) make it like this is what everyone does at your age, it really isn’t that big of a deal o Regression they will go back to not feeding themselves, maybe not being potty-trained anymore and this is OK o Perception seeing the situation from the child’s perceptive, seeing the stressors they are experiencing and responding to them Preschoolers o Initiative vs guilt (purpose) o Magical thinking thinking about (having imagination) that they can change their future, not really understanding reality o Fears comes from the unknown, addressing fears, clarifying what’s actually happening o Egocentricity o Sense of blame/responsibility thinking it their fault and this will last a long time, they will keep mentioning it o “safe place” procedures shouldn’t be done in child’s main room, taken to a procedure room so they feel safe n their room o allow child input when possible giving them a pink band aid after procedure, letting them have some control (when possible) on their experience School-Age o Industry vs inferiority (competency) o Can form trusting relationships o Concrete though process events/consequences o Prior hospitalization doesn’t alleviate fears o Desire normal routines and experiences o Communication/preparation Adolescents o Identity vs. role confusion (fidelity) o Dependent on peers/social groups o Disruptions/insecurities o Loss of independence/control == anger/frustration can’t drive, being stuck depending on parents when you just got out of that stage o Focus on peer group support try to connect with them other adolescents with same diagnosis o Privacy/confidentiality give them privacy, they don’t always feel com o Liberal visitation children hospitals have strict rules about visiting and peers are important to adolescents and have to be flexible for them to come visit Case Studies:??? Family Reactions o STRESS: diagnosis, hospital environment (when parking costs a lot), type of admission (came in thru emergency room or appointment), length of stay (longer you stay, more stressful or you just realize that this is a part of your life), change in child’s behavior (some children will resist treatment, parents have to understand), change in family routine (if you have other kids can get stressful o GUILT, WORRY, FEAR, ANGER o PRIORITIES: hospitalized child siblings work home o PHASE OF COPING: acquiescent information seeking (usually don’t question professional, but still need to be educated about what is happening and when etc) advocate (once you have the knowledge then you can say there are other treatments I want more options) o Need to pay attention to how the family is impacted o Hospitalization creates stress for entire family o Parents have need for information, participation, comforts themselves Sibling Reactions o COPE WITHOUT PARENTS o What impacts how a sibling copes o Age, developmental level: under 7 most vulnerable did I do something wrong? Will I get sick too? Harder for younger children to be separated from parents; anger that siblings is taking parents away; increasing their responsibility o Nature, understanding of illness: if sudden and life-threatening, more stressful Nature of relationship with sibling if close, it is more stressful Physical is major stressor important to have sibling visits with developmental prep beforehand; if no visits, phone calls, letters, emails, videos o Parent interactions o Routines at home o SES: if both parents can be there to share stress and support, that helps o Past experiences o Whole host of feelings, fears, questions navigate without parents o Why the setting matters? o ED Exaggerated responses from child Chaotic, police/ED staff, crowded Need for physical but also emotional care Need for information and preparation Control pain There are different challenges for children and families depending on the context of the care being given we start with the most difficult for children and families (the ED) o Ambulatory Care (outpatient settings) Seeing more required of outpatient settings in term of treating complex cases Waiting rooms Interpreters Making things child-sized Education regarding normal growth and development want to be available to provide that to families because most doctors and nurses don’t have that info but will Challenge of changing care providers and less focus on children’s psychosocial development o Home Health Care Can be welcomed change to hospital environment Can be stressful Important to prepare for transition home Siblings as active participants Round the clock care; complex procedures, no back-up there to assist Reactions of Hospitalized Children -Not all reactions are negative remember there are children who are more resilient, and staff can promote resilience, but we want to make sure we understand: o Typical Adverse Responses o Active, passive, regressive can happen in hospital or when child gets home Crying, whining, clinging (active) Screaming (active) Resisting medical procedures (active) Decreased talking (passive) Decreased eating (passive) Increased sleeping (passive) Soiling after toilet training (regressive) Compulsive behavior (regressive) o What elements of hospitalization cause adverse reactions? o 1. Unfamiliarity of hospital setting physical procedural (offset with procedural preparation to reduce vague and unexpected threats; important to provide sensory information) upsetting for children and families; when parents upset, emotional contagion children get upset (social referencing even in babies) o 2. How to offset? Procedural preparation to reduce vague and unexpected threats; important to be able to provide sensory information Research supports that preparation can decrease emotional upset and also increase behaviors that are helpful for better hospital stay and outcomes Bring home hospital Stimulations Parent-child contact Toys, even family pets can visit in some programs o 3. Separation Stages of protest, despair, detachment Protest: hours to weeks; waiting return of parent, cry, fuss, kick Despair: hopeless, quiet and withdrawn, superficial calm Detachment: looks like a recovery; when parents come back, child responds with indifference, which is the child coping with pain of separation, eventually will stop making attachments because of too much risk When is an upset child upon arrival of parents a good sign? Hs is not completely in despair and he has a secure attachment How do you make sense of a child more focused on presents than parental presence? He is more detached When does a sociable child indicate a problem? o 4. Age Infants Younger than 7 months somewhat protected Toddlers & Preschoolers Most vulnerable 7 months to 3-4 years Limited concept of time Magical thinking (hospitalization as punishment) School Age Negative reactions on the decline More realistic thinking Better able to develop relationships Adolescents Return of dependence on adults Appearance Peer group How do you work with children who have a developmental disorder? Interventions Infants o Maximize parent-baby contact; parental involvement in caretaking tasks o Skin to skin contact (babies in NICU) o Ease parent stress by restating medical info a better way they can understand o Stimulation Toddlers o Parent-child contact o Play with familiar toys o Child communicating thru their play o Parents be prepared for procedures, with child present o Cant act on it because aren’t therapists but can act on it Preschoolers o Everything concrete, no imaginative words show them exactly what it is when they are ready (complete preparation) o Parent-child contact o Play with expressive components; medical play School Age Children o Lots of play and prep before procedures o Maintain normal routine o Thorough prep o Parent-child relationship Adolescents o Provide a lot of privacy o Social interactions o Focus on body image o EX: Diabetes: a lot of stuff to learn but an adolescent’s main concern is not being able to get a shake with their friends Family Involvement o What are the challenges to having extended family involvement in medical settings? Too much drama Too many opinions Contagious Kids will get more upset Space- limited space Security- how do you know this person actually knows the child and won’t kidnap them? Young children Furnishings Distraught children Infection How do hospitals discourage family involvement? Limited space Limited food options No child visitors What kind of support should hospitals provide? Want them to feel like they have a voice of what happens to their kid Pre-admissions info Unlimited access Showers Kitchens Participation Support for siblings How to make siblings feel like a STAR? Providing Innovative Support to Help Siblings Heal o What are the numbers? o 12,500 children diagnosed with cancer each year (Candlelighters) o 18,000 siblings are impacted each year by the “emotional diagnosis of cancer o What research shows o Siblings have been identified as the most emotionally neglected and unhappy of all family members during serious childhood illnesses o Younger siblings were reported by parents to have more externalizing behavior problems (aggression, regression, school performance) o Older siblings are at increased risk for internalizing disorders (depression, anxiety, compulsive o Researchers noted emotional stress, sense of emotional deprecations, decrease in parental tolerance, anger and guilt o Good care for siblings includes Making siblings feel useful and participative Providing useful, manageable info Giving opportunities to share thoughts and feelings o Assistance includes Emotional support Fair attention o Siblings with more social support indicated significantly fewer symptoms of depression, anxiety and fewer behavior problems than siblings with less social supoport o High level of social support indicated significantly plays a protective role in psychological adjustment of siblings of pediatric cancer patients o 53% of siblings ages 8-18% (within 2 years of diagnosis) reported moderate to severe Post Traumatic Stress Symptoms and 27% qualify for diagnosis of PTSD disorder o IOM Report- Effective Patient-Provider Communication o Patient/family identification of psychosocial needs development and implementation of a Plan for Psychosocial Health Services that “links patient/family with psychosocial services” follow up and evaluation o Possible Mediating Factors o Nature of illness or disability o Age, gender, birth, order of siblings o Parental functioning o Psychopathology in family Current Historical o Implications for Interventions Don’t assume pathology Do assume a need for increased support Supporting parents = supporting kids o Emotional Responses of siblings o Love o Fear o Sadness o Resentment o Isolation o Shame/embarrassment o Concern o Guilt o Anger o Siblings Need o Medical info; cause, prognosis o Time and attention from parents and others o Validation of experience; normalizing emotional response o Effective parents o Common Profiles of Siblings o The Little Mom Often eldest daughter May show up more with siblings with a disability vs. an illness Lesson learned: I get love by helping out Child cares for all siblings Manage clean-up, get ready for school etc Coaxing, coaching siblings with disability Taking responsibility for safety Unaware of own thoughts and feelings May be managing own anxiety by exerting control o SuperStar May show up more with siblings of children with disabilities rather than siblings of ill children Often 1 born or first same-sex born after child with a disability Lesson learned: I get love by doing what my sibling can’t High achieving in school, sports, music May get most reinforcement outside of home o Mr. I’ll show You Often younger son Lesson learned: I get love by being dysfunctional Behavior mimics that of the sick/disabled sibling Provoking sibling with the disability High risk behaviors in adolescence o Invisible Girl Often the youngest daughter Lesson learned: I get love by staying out of the way Manages anxiety by withdrawing from stressful interactions Can get punished for normal behaviors labeled “acting out” May have increased risk for depression Tuesday: September 6, 2016 o Goals of Sibling Interventions o Promote full range of emotional experience o Teach and model effective coping o Restore imbalance of “it’s all about my sister/brother” o Decrease isolation o Provide support for parents o Resources for Siblings o Alex’s Lemonade Stand: mainly for siblings of cancer kids, give free stuff, things to help learn about their diagnosis o The Sibling Center: where siblings can play and hangout when sick sibling o Camp Erin: 3-day camp for children who have lost a loved one, sibling or parent o Sibling Support Project: not only for children whose sibling has a medical diagnosis, also for children with siblings that have a disability (ex: autism) o SuperSibs! To ensure that the siblings of children with cancer are honored, supported and recognized Re-defining the cancer sibling experience to face the future with strength, courage and hope Ages 4-18, all services FREE of charge Nearly 12,000 children served across U.S and Canada since April 2003 launch Direct Care and Comfort Program- ongoing support mailings that “meet the kids where they are” – through the MAIL Scholarships for High School Seniors- 17 awarded to date Resources and tools for professionals to use to integrate “sibling support” into programs that serve families impacted by pediatric cancer o SuperSibs! Impact Evaluation 91% of children’s parents say that SuperSibs! has has a positive impact on their child’s ability to cope 95% of teen/tween siblings say that SuperSibs! has helped them manage 100% of young siblings say that SuperSibs! has helped them manage o Outreach and education- SuperSibs! Sibling STAR Program Equipping and enhancing pediatric oncology professionals, hospitals, and organizations with tools and training to change the culture for siblings and better support them “front line” Support, Training, Awareness, Recognition- customizable toolkit Implemented with 150 hospitals pre-onc programs across U.S and Canada 75% of professionals indicated STAR Kit has positively added to sibling support services provided o STAR Kit Elements Research What can your hospital do? What can your floor/clinic/department do? Activities for individual children and teens Activities for groups Support to siblings who are bereaved How parents/grandparents/friends can help Discussion starters and conversation questions Staff awareness and sensitivity training Resources o What siblings want you to know o I still need you! o I want to feel important too! o I’d like to be involved. o Don’t assume I’m OK just because I’m not asking for help o Doing the right thing, and not causing trouble, doesn’t mean I’m not hurting o I miss you o I miss my brother/sister o I know what is happening, even if you haven’t told me o What I’m imagining may be worse than the truth- please be honest with me! o Include me! o I’m scared! o I want to ask questions too! o How can Child Life Specialists integrate sibling support? o Recognize SIBLINGS as survivors too o Include siblings in hospital tours and Q/A sessions o Assess sibling/family status upon intake o Educate parents on sibling impact o Provide therapy resource options for siblings o Make sure all events specifically include siblings o Offer support programming for young and teen siblings o Remember the sibling perspective in all that you do o Have a special place for siblings at your hospital (ex: sibling play area) o Recognize April 10 : National Sibling Day o Group/Individual/Family Activities o Individual Have kids create HOPE box (can be adapted to be used as a message or recognition box) Found poetry Sibling collages Inspiration calendars o Group Emotion ocean Worry wall Sibling journey (teen and young siblings) o Parents and Guardians Supporting Siblings o REFER children to appropriate website soon after diagnosis o Inform children on an ongoing basis o Encourage siblings to journal their thoughts and emotions o “One on one” time is important o ASK… and then LISTEN o Seek professional help for siblings (therapists, etc) o Acknowledge and reward your child’s own accomplishments o Designate a specific time to call o Avoid having siblings take on too many adult responsibilities in the home o Provide “pampering coupons” o Create a CarePage for the siblings o Give permission to laugh and pursue their own hopes and dreams o Remember…. Their feelings (whatever they may be) are OK! o Use the KISS form if your children are being cared for by others o Use the TEAM form to assist their teachers o Grandparents/Family/Friends Supporting Siblings o Send letters and cards on a regular basis o Offer outings and special times together o Let siblings know THEY are important too o Help take on “adult responsibilities” and chores in the home o Refer to EACH child by HIS/HER name o Ask if they are okay Preparation & Play o What teachers can say o Teacher: consistent figure in sibling’s life o What teachers can expect to see Guilt: “sometimes when a brother is very sick, we think it is our fault. We remember mean thoughts we had about them, and then we wind up feeling bad…” Not your fault Magical thinking: feel guilty b/c of any bad or mean thoughts they’ve had toward sick sibling; for their own health Jealousy:” it’s okay to feel jealous when your sister seems to get all the attention and you are left out, but let’s think of some good ways we can let our jealous feelings out without hurting anyone” For attention, care, possessions, play dough, finger paint, puppets, movement Rejection & Isolation: “When your brother is very sick, it seems like everyone spends all their time taking care of him; you may feel like you are not very important anymore” From family and medical team; feeling left out but not wanting to say it; not being informed about diagnosis Fear: “Most children get scared when their brother or sister gets sick. It is important to tell someone (like mom, dad, grandma, grandpa, teacher) you are scared so that you can talk about your fears with them” One of the most common; sibling die; they will get sick; separation; parental abandonment Jealousy: o Examine their own beliefs o Remain consistent, loving and firm with limits o Provide opportunities for expression o Reach out to parents o Provide medical play o Clear up misconceptions (if you can) o Help child stay in touch with sibling Siblings’ experiences with Childhood Cancer: A Different Way of Being in the Family Preparation and Coping Impact on siblings is not simple, not direct some research suggests psychosocial difficulties, other suggests strength (compassion, prosocial behavior, social competence) What things are related to better sibling functioning? Better family communication, resources, cohesion, adaptability Research design: qualitative, longitudinal Participants: families of children with cancer, recruited for hospital in Canada from inpatient and outpatient pediatric cancer units; 5 years or older; 30 siblings, all white, 6-21 years of age Data Collection: primarily interviews, in-home, audio-taped; prompts focused on awareness of sib cancer from onset till now; how it has affected them and family Themes: loss of a family way of life; loss of self within the family o A different way of being in the family keeping family together, being present, enduring sadness Preparation and Coping o Comfort for Invasive Procedures o Prepare the child and parent o Parent as team member o Treatment room: don’t do procedures in child’s hospital room, that should be their safe place o Positioning: hold child in a certain way that makes procedures less stressful, convincing medical professionals that it is okay if mom holds her while she gets treatment o Environment: make it child friendly o Preparation o As important as the needle o Previous experience: do they kind of what will happen or know nothing? o Reduce fear and anxiety: they know what’s going to happen o Promote long-term coping and adjustment: o How? Rehearsal with dolls Puppets Coping and relaxation skills: meditation Tours Videos, books, pamphlets o 3 key elements 1. Information- clear, honest, specific what and why what to expect sensorially (smells, sounds, feels etc) 2. Emotional expression what about this process is stressing the kid out the most stressors, misconception, fears 3. Trusting relationships o Parent as team member Respect Control o Treatment room Offer to help transport Hide medical equipment Focus objects/pictures: hold up picture of beach to get their mind off of medical procedures Quiet, nonthreatening Distraction o Positions Holding girl while she is looking at Dora The Explorer and not looking at the needle o Environment Make sure it is child-friendly space o Coping: Psychological prep: faster recovery and less emotional stress (Goldberger) 3 steps prepare: tell them about rehearse: let them practice it support Play is Children’s Work: Medical Play, what is it and why do we need it anyway o Play: o Any activity in which children spontaneously engage and find enjoyable o Universal and essential o Therapeutic Play vs. Play Therapy – DEFINETLY ON TEST o Therapeutic Play: focused on children’s emotionally stability (goal is not to have a long term relationship with the child) only help them at the moment to feel better (short-term) o Using a variety of arts and play expereicnes to improve child’s experience Therapeutic Play Continuum: o Play therapy: should only be done by a licensed play therapist, very structured, based on theory, builds on children’s normal ability to communicate and how they learn, and designed to get children through their hard times Allows therapists to develop a professional relationship with that child (long-term) o Medical Play/ Hospital Play Provision of real and medical play medical equipment to children for exploration o Non-directive vs. directive play Responsibility, choice, direction left to the child Adult assumes active role in them and content of play o Play; Why we need it o Allows children to express ideas, fantasies and feelings o Significantly promotes cognitive and social development, especially with adult involved o “fantasty and reality” meet o promotes mastery, helps develop internal locus of control I can control some things that happens to me, what happens to me isn’t the world’s fault, it’s just what it is (being able to mater and realize that) o Medical play- why we need it o Offers choice and control o Parents and staff can observe and learn about how the child understands the situation- clarify misconceptions o Child reveals concerns o Mastery- conquer a new setting o Exposure to equipment that has or may be utilized o Increases coping, decreases stress o What does it involve? An adult who can encourage play and exploration by asking and answering questions, role play Sage and inviting space Stuffed animals, cloth dolls, anatomically correct Basic medical equipment Supplement with specifics Limited number of adults o Point of contention Should adults and staff act as patients during medical play? o Developmental Differences Toddlers Imitation Skill play Sensory pleasure play Short attention span- parallel play Preschoolers Role exploration Involving others, adults Finer motor coordination, more verbalizations, longer attention space School Age Increased peer interaction Complex role development Seeking revenge on staff Adolescents Assist younger children in their play o From a Piagetian Perspective… Pre-Operational Got sick because he/she was and Magical cause of illness concept of contagion (nearness) Concrete Contagion becomes clear (people, things cause illness) Illness is inside the body but caused by external source Formal Operational Thought Multiple causes of illness, primarily physical Physical AND psychological processes impact body o The Empirical Evidence Articles from 1960 to 2006 10 studies, children 3-12 years old what do we know? Decreases anxiety and fears from admission to surgery to post-op Youth more cooperative during stressful procedures, more willing to return for follow-up treatment Medical play more effective than non-medical therapeutic play Reduction in physiological signs of stress What don’t we know? How does play change over course of hospitalization? When should play be offered? Timing? With whom? What about expressive arts, body image, tension- releasing play? Should play occur in group or individually? September 8, 2016: The Importance of Play (American Academy of Pediatrics) o Benefits of Play o Imagination, dexterity, cognitive, and emotional strength o Healthy brain development o Conquer fears o Master adult roles o Confidence and resiliency o Negotiate, resolve conflicts, self-advocate o Decision making o What are some reasons children have fewer opportunities for play? o Technology o Academics less recess time in school to make more time for class o Parents make their children way too busy o Effects of reduced child-driven play o Missed opportunities for increasing cognitive capacity o Boys face challenges in sedentary environments o Anxiety and increased stress o Changes in childhood o Single head-of-households, dual working parents o Professionalization of parenthood o Keeping up with the Joneses o College o Rigorous high school work o School testing o Media o Accessibility o Family considerations o Inadequate parenting o Less parental satisfaction o Lost opportunities o For health care professionals o Promote free playa s healthy and essential o Emphasize benefits of active play o Active play for fitness o Open-ended toys o Parent-child relationship: help parents function well with their kids o Parental love, role-modeling and guidance o Advocate for “safe spaces” o Reduce pressure for perfection o Therapeutic play and children with Leukemia o 2 groups of 12 children o one group was control, one has Leukemia o measures stress, social and cognitive play, behaviors, mood o were observed 4 days per week for 6 weeks o Rubin Play Scale What kind of play is going on o Self-distress measure: give them 3 different smiley faces and ask them which one looks like how they are feeling o Stress inventory: when kids are stressed they go through 4 stages 1. The event 2. Making sense of the event 3. Search for coping strategies: the more coping strategies they have, the more competent they have, the more control they have of situation and less anxiety they have want them to have more coping strategies to reduce anxiety 4. Implement coping strategies o Results Leukemia Control More non-play (kids were so More play behaviors stressed they couldn’t play) Variety of activities (many Repetitive behavior (everyday different kinds of play) they came in, played with Parallel and group play same toy in the same way) (interacted with each other) Solitary play (sat alone and Moe cognitive play didn’t engage in any social play) Less cognitive play o Play is Coping: “when a child cannot play we should be as troubled as when he refuses to eat or sleep” o Freud and Erikson Freud: Catharsis and Mastery: Need to play so it can be cathartic (relieve stress) and master what it is with you are struggling with Erikson: Reconstruct, re-enact, reinvent: Rethink the whole process in your head, re-enact it and then re-invent so next time you can enjoy o Choice of toys: Anxious= toys relevant to their anxiety Not anxious: novel toys Discussion: Children who are stressed and anxious may be unable to play and miss out on an opportunity to problem-solve Children may engage in repetitive behaviors and play when they have not mastered or overcome the original idea Children under stress may engage in more passive behaviors. This may be for a sense of security and routine Child self-reported mood affected play: stressed=solitary and functional play Play, Music, Pets! What is play? Playfulness promotes adaptation, coping and preparation for future roles Play as Enjoyment: o Intrinsically motivated (doing it b/c they want to do it) o Means vs. Ends (process of doing it vs. end product, but best part is playing) o Symbolic, non-literal (this is pretend, not real) o No RULES! o Engagement (kids want to do it, except when they are too stressed) Play as Development: o Nonsocial: babies are exploring and using their senses parallel: with toddlers, will play next to each other but not together associative: use same toys and stuff but not really working together cooperative: everyone agrees to accomplish one goal o Infancy/toddlerhood Exploratory and sensory Pretend play o Preschool Dramatic and make believe play Rough and tumble play o School Age Social, group of work of planning play Reality: games with rules Development of Dramatic Play o Linked to cognitive abilities of children o Dramatic play in younger children Grounded in reality Actions directed at self o Dramatic play in older children Less self-centered Much more complex o Sociodramatic play Advanced form of dramatic play Included social interaction and themes Play as Learning: “In free play, children reveal their future minds” o Piaget: play as assimilation o Vygotsky: play moves children into zone of proximal development o Sutton-Smith: play is a comfortable environment for problem- solving Play as FLOW o FLOW is a state in which… Fully in the moment, absorbed Consumed with pursuits Intrinsically rewarded; ecstatic state State of forgetfulness Can last for minutes or hours Activity is neither too difficult nor too easy Play as Comfort o A place of comfort to return to during distress o Restorative, healing potential o Good alternative to being idle o The safety of social relationships Play as Hope o “through imaginary play, children take on an attitude toward the possible, explore a range of potential futures or in effect, travel through time and space to a different or better childhood” Play and Pets canine companions for independence Past research on pet therapy o Pet therapy has been shown to Promote social interactions and behaviors Increase emotional comfort Decrease loneliness and anxiety Provide a source of self-esteem and sense of independence Decrease physiological indicators of stress like heart rate and blood pressure BUT.. we don’t know much about pet therapy with children in the hospital o Study questions: a) How do patients rate their mood before and after a single session of child-life or pet therapy; b) how do parents and caregivers perceive a child’s mood prior to and following child-life and pet therapy; c) what percentage of time are positive, negative, and neutral emotions displayed during child-life and pet therapy; and d) how does child-life and pet therapy affect physiological indicators of stress, that is, heart rate and salivary cortisol? o Study subjects: 70 hospitalized children boys 56%, girls 44% 9.86 (SD= 2.80) years Pet therapy vs. child life group Observed and measured mood rating, blood pressure, saliva sample-before and after, videotaped Results: Children involved in pet therapy displayed significantly more positive affect (46% of time during videotaping) and touching (57% of time) than did children engaged in child-life activities more positive emotions for kids with pets, but higher heart rates (not what they were hoping to see) Heart rate was significantly higher in the pet therapy group than in the child-life group prior to and following therapy à don’t know why heart rate was higher, more studies need to be done Benefits of Music Supports positive interactions and parenting behaviors Infant-directed speech Relax, soother distress, invite sleep Allow children to express themselves GOOD LUCK ON TEST 1!!
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