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Flashcards in Illness and Young Age Deck (30)
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Adolescence: “A period of special stress”

• Physical changes
• E.g. pubertal growth
• Psychological changes
• E.g. newly developed cognitive abilities
• Social changes
• E.g. school change, peer pressure, changing social structure


Developmental challenges during adolescence

• Separating from parents and establishing a self identity
capable of independent action
• Developing a sense of sexuality
• Developing vocational goals (goals for the future)
• Developing a self image and personal ethics and behaviour


Chronic illness among adolescents

• Prevalence estimates range from 10-20% of adolescents with some sort of chronic health challenge
• Include illnesses such as:
– Diabetes
– Epilepsy
– Scoliosis
– Arthritis
– Asthma
– Hypertension
– Cancer
– Childhood illnesses with improved survival such as spina bifida, congenital heart disease, and cystic fibrosis


5 challenges when researching adolescents &
young adults (AYA)

• Studies fail to recognise adolescence as a distinct developmental stage- grouped with children (0-14) and/or young adults (15-34)
• When adolescents are recognised as a distinct stage, age range is not consistent and can range from 10-17 years, 12-17 years, or 15-24 years
• Inconsistent definition of chronic illness- include developmental disorders such as ADHD, or mental illness? Inconsistent definition.
• Only recently have young people’s views about preferences in health care been sought- the parent may be used as a proxy for the adolescent
• The AYA population is difficult to track, and follow-up is more challenging than for children or older adults (transient population, lots of changes)


Challenges for adolescents

• Chronic illness during adolescence constitutes a major challenge for the individual, their family and the health-care team
• Issues important to understand to this population are the impact of illness on:
• Growth and puberty
• Mental health
• Development of self concept
• Education
• Family relationships
• Peer relationships


Impact of chronic illness: mental health

• Adolescents with a chronic illness more likely to exhibit higher depressive symptoms and lower self esteem compared to healthy peers
• BUT it seems to depend on a number of factors
• Disease type
• Higher rates of depression in adolescents with chronic fatigue syndrome, chronic pain, epilepsy
• Lower rates of depression in HIV, cancer, cystic fibrosis
• Gender
• Female adolescents tend to exhibit depressive symptoms more than male


Impact of chronic illness: self concept

• Body image and the development of a sense of ‘sexual-self’ may be impaired by chronic illnesses
• Distortion of the physical body (e.g. stomas/scars)
• Requiring treatments that may be distancing to others
• Adolescents with chronic illness report higher body dissatisfaction than adolescents without chronic illness
• Body image issues focus particularly on weight
• Result in higher rates of high-risk weight-loss practices (e.g. type 1 diabetes)


Impact of chronic illness: Education

• Recurrent illness and the demands of treatment regimens may impact upon school attendance and educational achievement
• May result in vocational impairments and loss of financial independence in adult life.
• Some teachers may be unsupportive of adolescents with chronic illnesses or may not know enough about the condition
• May result in missed opportunities for adolescent


Impact of chronic illness: Family relationships

• Managing a chronic illness and the restrictions on lifestyle can increase dependence on family
• at a time when this is usually decreasing
• Most young people with chronic conditions feel their parents are “overprotective”
• Parents often reported as the best allies in helping young people with their disease
• However- can also be a source of tension and resentment


Impact of chronic illness: Peer relationships

• Systematic review (Taylor et al., 2008): being with friends and gaining acceptance was the most important aspect of a young person’s life
• ‘Fitting in’ with friends can be complicated by a chronic illness
• Some report difculty making friends, telling friends about illness
• HOWEVER-- Many adolescents with chronic illnesses report excellent peer relationships and some illnesses (e.g. cancer) may increase peer acceptability
• Forming friendships with other adolescents with the same illness can be benecial


Communicating with adolescents

• Many adolescents report they often feel left out of consultations, in which the discussion commonly focuses on parent issues and perspectives
• “some doctors still think that mum and dad are more important than me, and they have to talk to them instead of me. But its no good talking to them. I’m the one with it [illness]” (Girl, 11, cystic fibrosis)
• Some adolescents find the status/power of their doctor prohibitive important to establish a sense of rapport and equality with the adolescent
• Some adolescents unable to effectively communicate with health professionals
• Important to establish rapport and sense of equality


Child hospitalisation

• Hospitalisation is a stressful experience for pre- and primary- school aged children.
• Among school aged (7-14 years) children in paediatric wards, main concerns centred around:
• Separation from family and friends
• Unfamiliar environment
• Investigations and treatments
• Loss of self-determination


Separation from family and friends

• Children experience separation from family and disruption to family routines and everyday activities
• They miss their parents, siblings and the comforts of their home environment
• Disliked hospital food and meal routines
• Hospitalisation can cause disruption to the usual routines of schooling, sporting activities, and contact with friends
• Some express anxieties about missing school and falling behind with schoolwork or being left out of their peer group


Being in an unfamiliar environment

The unfamiliar and uncertain setting of a hospital can create feelings of anxiety among children
• Some children report fears about health professionals and the procedures they would have to endure
• Fears can be based on a variety of sources, ranging from experiences of visiting others in hospital, television programs, and friends
• Misconceptions can lead to a high level of anxiety for some children


Receiving investigations and treatment

Range of fears about investigations and operations- possibility of harm, pain, and possible death
• Previous experiences of pain and concern about experiencing it again
• Invasiveness/intrusion of treatment or investigations: ‘pushing in’, ‘drilling in’, ‘going through me’, ‘opening up’, ‘taking out’ and ‘losing’.
• Potential for surgery to change their body- appearing different from other children, having visible scars or possibly permanent disfigurement.


Loss of self determination

• Children may lose self-determination over meeting personal needs while in hospital (e.g. hygiene, feeding)
• May lack privacy and personal space
• Can lack control over matters such as waking time, sleeping time, activities, and obtaining food and drinks


Best parts of hospitalisation

• 388 Finnish children (aged 7-11) asked about best part of hospital
experience (Pelander et al. 2010)
• Main categories of responses
• People
• Activities
• Environment
• Outcomes

• People
• Nurses, parents, family, play workers, hospital clowns, making ‘hospital friends’.
• Displays of humanity (nurses and doctors who were friendly)
• Activities
• Entertainment activities, playing games, watching movies
• Getting help/treatment, getting good food, receiving good care
• Environment
• Entertainment objects provided
• Good quality hospital equipment (e.g. comfortable bed)
• Privacy (e.g. no one disturbing you)
• Outcomes
• Getting better
• Opportunity to rest


What about younger children?

• Limited research among preschoolers- mostly based on observations
or on interviews with proxy adults (e.g. parents)
• Fears during hospitalisation for 4-6 year olds
• Being away from home: Separation from patients, missing security of home, being in an unfamiliar environment with unfamiliar people, being left alone
• Being hurt: fear of being injured, scary equipment, experiencing pain (not understanding necessity of pain inducing procedures), needles-- triggers resistance efforts. Undressing/nudity made some children feel
distressed. Children tried to resist procedures by hiding, escaping, yelling, crying.
• Not being able to do what I want: Loss of self-control, unable to make up own minds, restricted actions.
• Additionally, fears typical for child’s developmental stage (e.g. dark)


What can be done to help?

Preparatory procedures and preadmission programs
• Age appropriate explanations, and relaxation techniques prior to invasive procedures
• Promotion of a safe and comfortable environment in the hospital, where children are able to have as much autonomy, control, and self determination as possible
• Child life/play therapy


Objectives of child life therapy

Child Life Therapy involves evidence-based
interventions, which aim to reduce the stress and
anxiety that can be associated with hospitalisation by
focusing on developmental, social and emotional


Objectives of child life/play therapy

Hospital-based play therapy has multiple objectives:
• To ensure connection with the familiar, friendly environment of home
• To provide a medium for the expression of emotions (e.g. anger, frustration, boredom, fear)
• To help subdue anxiety, misconceptions, and sadness that hospital experiences provoke
• To help maintain self esteem and confidence
• Protect and enhance their developmental integrity
• Use the experiences of illness and hospitalisation to build strengths
• Encourage participation of patents / siblings
• This work is done predominantly through various forms of therapeutic (preparation, distraction, post-procedural) and normal play


Therapeutic play

• More structured and purposeful than normal play
• The use of more focused, adult directed play opportunities allows children to express their feelings and develop coping mechanisms to deal with traumatic or painful experiences
• Includes activities such as:
• Preparation play
• Distraction play
• Post-procedural play


Preparation play

• Aim: to prepare children for surgery or other unpleasant medical procedures
• Can provide information about what is going to happen and enables children to explore, understand (and cooperate) with hospital procedures in age appropriate way
• Provides opportunity to correct any misconceptions the child or family may have
• Gives staff opportunity to build rapport with child
• Using play to prepare a child is also an effective way of gaining informed consent of the child and their parents/ carers

• Examples:
• Children playing with medical equipment (e.g. masks, (play) syringes, stethoscopes)
• Dolls/teddy bears may be used for demonstrations
• Participating in age appropriate demonstrations/discussions (videos, books, pictures)


Efficacy of preparatory play therapy

• RCT of children undergoing surgery (He et al., 2015)
• 47 control: routine care
• 48 intervention: 1 hr individual face to face therapeutic play intervention
with parents.
• watching preparatory video
• looking at photos of operating room
• using doll to demonstrate preoperative procedures
• Results: Compared with control group, play therapy group demonstrated:
• significantly lower negative emotions prior to operation
• significantly lower post operative pain


Distraction play

Aim: to distract/divert the child’s focus when undergoing a
procedure that may be frightening or painful
• When distraction is successful >> form a temporary barrier between the child’s fearful mind and the physical experience of the procedure
• Can reduce anxiety/distress, perception of pain


Distraction play
• Aspects to be considered:

• Positioning: Of parent / equipment, ensuring child’s comfort (eg. get mum to stand in front of equipment)
• Timing: Of distraction and medical staff (planning crucial). Equipment should be ready. Child may lose interest quickly, so distraction should be used only at appropriate time
• Positive reinforcement: All efforts of child should be praised
• People involved: What does the child want? Who would be most supportive for child?

• Examples of distraction:
• Objects: Distraction cards, kaleidoscope, bubbles, books, toys
• Activities: Singing, music, TV shows, reading, playing a game


Efficacy of distraction play therapy

• Systematic review of distraction play on needle pain/distress
(Birnie et al., 2014)
• 37 included studies
• Results:
• Pain intensity: Significant effect of distraction in reducing self reported pain
• Distress: Significant effect of distraction in reducing self reported distress. Significant effect of distraction on behavioural measures of distress


Post-procedural play

• Aim: to allow the child to evaluate the experience and make sense of what happened
• Gives them opportunity to discuss what went well, and what didn’t
• Important for revealing areas for improvement should future intervention be required
• Allows for praising, rewarding, and reinforcement of the child
• Important for emergency admissions/procedures (where preparation can’t be done)
• Can help to correct misconceptions about what “things” were done to them and work through these events

• Can take many forms
• Examples
• Role playing, puppets, discussions, use of toys to demonstrate procedures


Efficacy of post-procedural play

• Limited empirical studies of post procedural play
• One study (Ullan et al., 2014) examined effect of play during post-surgical period in RCT design
• Children in post-surgical play group scored lower on pain scale than children in control group


Normal developmental play

• Aims:
• To promote optimum psychosocial development
• Prevent developmental regression
• To promote fun
• To provide “normality” and “escape”
• To provide social opportunities for children
• Should be tailored according to child’s age and abilities

• Examples:
• Toy/game play (construction toys, board games)
• Art play (e.g. painting, play dough, crafts)
• Imaginative play (e.g. dolls, characters, puppets)
• Physical play/activities (kicking ball, throwing, dancing)
• Sensory play (music, lights, bubbles, water play)
• Reading