Background The terms family-centred care (FCC) and family-centred services (FCS) are used interchangeably across the continuum of children's healthcare to encompass concepts of: parental participation in children's healthcare; partnership and collaboration between the healthcare team and parents in decision-making; family-friendly environments that normalize as much as possible family functioning within the healthcare setting; and care of family members as well as of children. However, authors from different professional and policy perspectives have used different definitions and literatures when arguing the evidence for FCC and FCS.

Method  A critical literature review and theoretical discussion exploring common concepts and issues forming the basis for a research agenda further strengthening of the evidence base for FCC. A systematic identification of constructs, concepts and empirical indicators is developed and applied to exemplars in pain and asthma that span the continuum of children's healthcare across acute and community settings.

Conclusions  The extent to which the concepts are supported by research and applied in practice remains unclear. We propose that re-thinking of FCC is required in order to develop a more coherent programme of research into the application of FCC theory in children's healthcare.

Re-thinking family-centred care across the continuum of children's healthcare.

The Paediatric Pain Profile (PPP) is a 20–item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11 months, SD 4 years 7 months; range 1 to 18 years), unable to communicate through speech or augmentative communication. Parents used the PPP to rate retrospectively their child's behaviour when‘at their best’and when in pain. To assess interrater reliability, two raters concurrently observed and individually rated each child's behaviour. To assess construct validity and responsiveness of the scale, behaviour of 41 children was rated before and for four hours after administration of an‘as required’analgesic. Behaviour of 30 children was rated before surgery and for five days after. Children had significantly higher scores when reported to have pain than‘at their best’and scores increased in line with global evaluations of pain. Internal consistency ranged from 0.75 to 0.89 (Cronbach's alpha) and interrater reliability from 0.74 to 0.89 (intraclass correlation). Sensitivity (1.00) and specificity (0.91) were optimized at a cut-off of 14/60. PPP score was significantly greater before administration of the analgesic than after (paired-sample t-tests, p < 0.001). Though there was no significant difference in mean pre- and postoperative scores, highest PPP score occurred in the first 24 hours after surgery in 14 (47%) children. Results suggest that the PPP is reliable and valid and has potential for use both clinically and in intervention research.

https://www.onlinelibrary.wiley.com/doi/pdf/10.1111/j.1469-8749.2004.tb00428.x

Clinical validation of the paediatric pain profile.

Objectives: People with learning disabilities are more prone to a wide range of additional physical and mental health problems than the general population. Our aim was to map the issues and review ...

/pdf/access-to-health-care-for-people-with-learning-disabilities-20cdbqlids.pdf

Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence.

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.

https://pediatrics.aappublications.org/content/pediatrics/early/2017/05/18/peds.2017-1002.full.pdf

Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System

Clinical observations suggest that nonverbal children with severe intellectual disability exhibit pain in a wide variety yet uniquely individual ways. Here, we investigate the feasibility and describe the initial psychometrics properties of the Individualized Numeric Rating Scale (INRS), a personalized pain assessment tool for nonverbal children with intellectual disability based on the parent’s knowledge of the child. Parents of 50 nonverbal children with severe intellectual disability scheduled for surgery were able to complete the task of describing then rank ordering their child’s usual and pain indicators. The parent, bedside nurse and research assistant (RA) triad then simultaneously yet independently scored the patient’s post-operative pain using the INRS for a maximum of two sets of pre/post paired observations. A total of 170 triad assessments were completed before (n = 85) and after (n = 85) an intervention to manage the child’s pain. INRS inter-rater agreement between the parents and research nurse was high (ICC 0.82–0.87) across all ratings. Parent and bedside nurse agreement (ICC 0.65–0.74) and bedside nurse and research nurse agreement (ICC 0.74–0.80) also suggest good reliability. A moderate to strong correlation (0.63–0.73) between INRS ratings and NCCPC-PV total scores provides evidence of convergent validity. These results provide preliminary data that the INRS is a valid and reliable tool for assessing pain in nonverbal children with severe intellectual disability in an acute care setting.

http://www.marthaaqcurley.com/uploads/8/9/8/6/8986925/pain_inrs.pdf

Validation of the Individualized Numeric Rating Scale (INRS): A pain assessment tool for nonverbal children with intellectual disability

Background. Despite advances in the assessment and management of children's pain, children with profound special needs are especially vulnerable to poor pain management. Their underpinning condition often severely compromises their ability to express pain through the usual verbal and behavioural routes. The lack of any appropriate framework for assessment results in a suboptimum and inaccurate approach to an important aspect of their care.

Purpose. The purpose of the study was to explore the ways in which parents of children with profound special needs assess and manage their children's pain.

Methods. Qualitative case study design underpinned the study using guided interviews with the 15 parents/carers (of 12 children aged 5–16 years with profound special needs).

Ethical approval. Ethics Committee approval was gained.

Findings. A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions.

Conclusions. Parents felt that their child had learned to live with significant levels of chronic and acute pain. Assessment of pain was an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years. Parents used different strategies for both the assessment and management of pain based on an intimate knowledge of their child's usual nonpain state. Even with a limited repertoire of behaviours available to them, children were able to express pain. Parents often felt isolated in relation to pain management and under-used as a resource by health professionals.

Dealing with uncertainty: parental assessment of pain in their children with profound special needs.

Pain assessment is essential for effective pain management. Development of structured pain assessment and documentation of the child's pain history is vital. Involving the child and family in pain assessment is crucial for effective pain management. Pain management requires multiprofessional commitment and involvement. The role of the acute pain service is a vital element within a Children's Trust.

Elizabeth Mcarthur

Papers

Dealing with uncertainty: parental assessment of pain in their children with profound special needs.

Pain assessment and documentation--making a difference.