Jon Needham, BSc (Hons), Dip HE, RSCN, RGN.
Adolescent Specialist Nurse, City Hospital Site, Sandwell and West Birmingham Hospital NHS TrustYoung people aged 10-20 years old make up 15-20% of people in the UK, and even more within some ethnic-minority populations. For example, in the Pakistani/Bangladeshi population this rises to around 37% (Coleman and Schofield, 2003). That is around 7.5 million young people, many of them potential NHS service users.
Young people aged 10-20 years old make up 15-20% of people in the UK, and even more within some ethnic-minority populations. For example, in the Pakistani/Bangladeshi population this rises to around 37% (Coleman and Schofield, 2003). That is around 7.5 million young people, many of them potential NHS service users.
However, an intercollegiate party organised by the Royal College of Paediatrics and Child Health (2003) reported several blocks to young people accessing adequate health care. These included:
- Services not geared to meet their specific needs
- Fears over a perceived lack of confidentiality
- Staff who did not listen.
The children and young people's National Service Framework (NSF) (DoH, 2003) has promised a review of the services offered to children and young people within the NHS. It outlines core minimum standards by which services will be monitored, one of which is the entitlement to adequate pain management.
A core principle outlined within the hospital standard is that young people can expect to be involved as active partners in their pain management. The NSF promotes not only the appropriate choice of drug, dose and frequency, but also the effective use of psychological therapies, including distraction and coping skills.
The contention is that the tenets of pain management for young people should be no different to those of children or adults. The teenage years do not necessitate significantly different pain treatment pathways; what is required is a substantial shift in philosophical approach to the care of the adolescent (RCPCH, 2003).
To understand their response to pain and ability to report and cope with it means exploring the social construct of adolescents and the associated stages of development. Viner and Keane (1999) identify several, often conflicting, chronological definitions of adolescence, but any one has to include the biological, psychological and sociological. For the purpose of this paper, a definition of the young person includes the mature 10-year-old to the immature 20-year-old.
Muuss (1996) refers to the work of developmental theorist Kurt Lewin (1890-1947), who proposed that behaviour is the individual's response to their environment. Perceptions of their environment relate directly to experience, personality and knowledge to create a developmental stage or 'life space'. Lewin's view is that adolescents are in a period of transition from childhood to adulthood, and while not belonging fully to either group, exhibit behaviour consistent with both. Similarly, society does not appear to know how to treat this age group, by disallowing childish behaviour while prohibiting adult action (Muuss, 1996).
In applying Lewin's developmental model to pain management and attempting to understand an adolescent's response to a situation such as pain, one has to consider interdependent factors that influence the young person.
Hospitalisation and injury are outside their normal range of experience, argues Muuss. The corresponding loss of privacy and dignity, lack of knowledge and loss of control that may be experienced during an episode of pain, for example, will mean they move to a 'life space' associated with their experiences as a child.
Staff caring for the adolescent must make an effort to understand them, and address the loss. The skill needed to deliver effective pain management is in the ability to deal with the young person in both their child and adult space.
Capacity and consent
In 2001, the Department of Health addressed discrepancies in the practice of obtaining consent in the NHS. Although the policy relates significantly to examination and surgical procedures, the principles apply to treatments offered, including pain management, analgesic alternatives and administration routes. The over-riding principle is that of sharing information, and this relates directly to choices available to the young person when looking at pain management. For optimal and effective control of symptoms the young person needs to be aware of:
- The alternatives available
- The benefits of the treatment
- More importantly, any significant risks, such as the minimal risks attached to epidural pain control (MacIntyre and Ready, 2001).
Informed consent is not a matter of signing a consent form or receiving verbal consent to allow treatment, it should be seen as an ongoing process between provider and patient (DoH, 2001).
Within adolescent health-care delivery, the individual's capacity to make decisions for themselves is still a key issue (Dimond, 2001). The principle of the 1989 Children Act, to involve the parent or carer in the care of young people, is wholly supported. However, in decisions about the management of pain, or where no parental support is available, the young person's capacity should be assessed. Dickey and Deatrick (2000) write that 'adolescents must display cognitive processes indicative of a capacity to make an informed health-care decision' and that such an acknowledgement of ability empowers the young person to take an active part in their own health.
In the Family Law Reform Act of 1969, there is a rebuttal argument that those who reach the age of majority (18 years) have the right to make decisions for themselves and that only if incapacity is demonstrated would that be overridden. Those under 18 years must demonstrate maturity and understanding. If the criteria used to prove incapacity are 'turned on their head' and used as a benchmark for understanding, health professionals can use this as a model for assessing capacity.
The capacity for young people to make autonomous decisions in relation to pain management can be argued if the criteria listed in Box 1 are fulfilled. For the four criteria to be met, discussion about anticipated levels of pain and the strategies available to manage these should occur as soon as possible, and where associated with an elective surgical procedure, in the pre-operative phase as part of the consent process.
Capacity must be seen as a status that changes with the level of decision being required of the young person, as well as their physical and mental state at the time of assessment (Dimond, 2001). A young person may be capable of consenting to a patient-controlled infusion, but may not be in a position to consent to an epidural because of the longer-term implications.
Concordance with treatment
Rosina et al (2003) reported a link between non-concordance with treatment and an increased vulnerability to poorer psychological functioning, particularly in those young people with a chronic illness. This non-compliance was demonstrated by an aversion to pain medication and a general lack of confidence in its therapeutic value.
For health-care professionals, the connections between diagnosis, treatment and symptom management are obvious, but such links may not occur for the young person.
Rosina et al propose that illness, particularly associated with a life-long condition, is adopted as part of their social construct, therefore the demanding treatments can be seen as something that are done 'to them', rather than something with which they actively participate.
Kyng[ap6]s et al (2000) outline an instrument to measure compliance in adolescents with a chronic disease, using the measurement of physical symptoms as a criterion.
Though written predominantly for the management of diabetes mellitus, the study has been extended to incorporate rheumatoid arthritis, and could be applied to other conditions such as cystic fibrosis. Concordance with treatment could be measured against specific symptoms such as arthralgia associated with not taking NSAIDs or abdominal cramps associated with a lack of pancreatic enzyme supplements.
Eccleston et al (2003) address chronic pain management within an adolescent population using cognitive therapy and the multidisciplinary team. Effective management was seen to depend on the alliance between the interdisciplinary team and the patient, where clinical evidence was shared and progress, or lack of it, discussed. Also important were family support and a strong group alliance with other patients.
Assessment of pain
Muuss (1996) states that young people become self-aware in terms of the development of adolescent psychology at the age of around ten, whether linked to Robert Selman's social theory of 'third-person, mutual perspective taking stage 3' or Jean Piaget's cognitive theory 'formal operations' stage. They begin to consider:
- The domain of individual concepts
- The perspective of self and others.
This developing ability to think in the abstract or third person allows them to use analogue scales and self-report measures in the assessment of pain (RCN Institute, 1999). It is a move away from subjective assessment by clinicians to a more accurate evaluation of pain as experienced by the young person (RCN Institute, 1999).
Associated with pain assessment is the need for the young person to understand what to expect during a painful experience (Doorbar and McClarey, 1999). Examples given by young people outlined the importance of:
- A realistic assessment of the outcomes
- Being consulted
- Their experiences being acknowledged and acted upon.
Bird (2003) makes several observations about pain assessment tools. Though looking at their use in a wider population group, she draws conclusions that apply to the adolescent. Definitions of and reactions to pain may have a cultural overlay (McCaffery and Pasero, 1999).
For the adolescent it is important to avoid cultural stereotypes. Though the young person may come from a specific ethnic background, their social construct may not reflect their cultural elders, but the society they function within, and the street culture of their friendship groups.
Similarly, for a pain assessment tool to function effectively it must be understood by those using it. Where language is misunderstood by one side or the other, either the technical language of the professional, or the specific argots associated with youth culture, true assessment cannot occur. Professionals need to take time with the young person to establish a common language based around the expectations of both parties, drawing on the skills of the professional and the experiences of the young person.
The basic pharmacological tenets of pain management for the young person may be no different to those of the child or adult. However, the impact of the growth of the adolescent, particularly in relation to their psychological development, requires a substantial shift in the health-care professional's philosophical approach to the management of their pain.
The complex legal status of the adolescent requires the clinician not only to consider the rights and responsibilities of the developing young person, but to cope with their fluctuating ability to make autonomous decisions, while balancing the need to involve the parent or carer.
Closely linked to this is the need for the young person - especially those with a chronic illness or an acute episode of pain - to understand the disease process and how it applies to them, and that their experiences are normal. With increased information should come greater compliance to prescribed treatment and more accurate reporting of pain symptoms and control.
Finally a variety of pain assessment tools exist (Box 2) (RCN Institute, 1999; MacIntyre and Ready, 2001) that can be used with this age group.
Adolescents represent a significant proportion of the population, yet hospital services do not cater well for them. Within most district general hospitals there are enough adolescents spread between the children's and adult wards to require between 15 and 18 in-patient beds (Viner, 2001). Clearly, pain management services must deliver services to meet their clinical needs.
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Dimond, B. (2001)Legal aspects of consent 8: children under the age of 16 years. British Journal of Nursing 10: 12, 797-799.
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Eccleston, C., Malleson, P., Clinch, J. et al. (2003)Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy. Archives of Disease in Childhood 88: 10, 881-885.
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