Illness and Young Age Flashcards
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 difculty 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 benecial
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.
