Focus Topics

topic 3 | Activity 8: Supportive approaches to care

Assessment and management of symptoms and quality of life

Symptoms can manifest differently in children when compared to adults. Children may also have different psychological, behavioural and social responses to symptoms. As a child’s body grows and develops rapidly, frequent assessment and updating of management strategies is required. Symptoms and the subsequent management can interfere with children’s normal development.

Fatigue can impact on a child’s ability to socialise and add to their feelings of social isolation. [1, 2] Management of pain and other symptoms at end of life can impact on the parent’s grief and ability to move forward. [3]

Self-report is recognised as the gold standard when assessing symptoms and quality of life for adults. Children’s self-report of their needs and experiences is also important, although the way such assessment is conducted needs to take into account the unique characteristics of the child. The observations of family members and health professionals are integral to identify the child’s needs especially where children are too young or unable to communicate effectively how they feel. [4] Symptoms that can be experienced by children with life-limiting illnesses include:

  • Pain
  • Dyspnoea/cough
  • Fatigue
  • Poor appetite
  • Nausea and vomiting
  • Constipation/diarrhoea
  • Change in sleeping patterns
  • Deteriorating ability to swallow
  • Fever
  • Anxiety
  • Seizures
  • Irritability/agitation.[5]

Management of symptoms requires:

  • Careful assessment
  • Identification of contributing factors
  • Tailoring of pharmacological and non-pharmacological strategies to the child’s needs
  • Ongoing evaluation and monitoring.

Pain and symptom management in children with life-limiting illnesses is especially complex due to the unique biological, pharmacokinetic, psychosocial, and spiritual factors associated with a person’s growth and development. For example, measurement of pain for infants, younger children and children with neurological impairment, is more accurate through non-verbal assessment and through observing changes in their body and behaviour. [6]

In older children and adolescents, using a scale to self-report pain can be an effective tool. A systematic review of tools used found the effectiveness of tools depends on the child’s age, purpose of using the tool, questions asked and implementation of the tool. [7]

Children’s metabolic rates and physical size require specific dosing protocols for medications and regular review for the pharmaceutical management of pain. Consultation with a specialist pain health professional or paediatric palliative care service is recommended if there is any unfamiliarity in paediatric dosages. [5]

  1. Describe an approach to assess pain in a four-year-old child with a life-limiting illness.
  1. Taylor, R.M., Pearce, S., Gibson, F., Fern, L., and Whelan, J. (2013). Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis. International Journal of Nursing Studies, 50(6), 832-846.
  2. Ruland, C.M., Hamilton, G.A., and Schjødt-Osmo, B. (2009). The Complexity of Symptoms and Problems Experienced in Children with Cancer: A Review of the Literature. Journal of pain and symptom management, 37(3), 403-418.
  3. Bruce, M.(2006). A systematic and conceptual review of posttraumatic stress in childhood cancer survivors and their parents. Clinical Psychology Review, 26(3), 233-256.
  4. Klassen, A., Anthony, S., Khan, A., Sung, L., and Klaassen, R.(2011). Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review. Supportive Care in Cancer, 19(9), 1275-1287.
  5. Shaw, T.M.(2012). Pediatric Palliative Pain and Symptom Management.Pediatric Annals, 41(8), 329-334.
  6. Nilsson, S., Finnstrm, B., and Kokinsky, E.V.A. (2008). The FLACC behavioral scale for procedural pain assessment in children aged 5 – 16 years. Pediatric Anesthesia, 18(8), 767-774.
  7. Cohen, L.L., Lemanek, K., Blount, R.L., Dahlquist, L.M., Lim, C.S., Palermo, T.M., McKenna, K.D., and Weiss, K.E. (2008). Evidence-based Assessment of Pediatric Pain. Journal of Pediatric Psychology, 33(9), 939-955.