Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers’ Perspectives

Abstract

Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error (“learning to get on with it”); this was accomplished through “learning to know without a rule book or guide”; “learning to be a convincing advocate”; and “learning to endure and to get things right.” Experiential and reflective learning was evident in the way the mothers developed a “sense of knowing” their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns.

A systematic review of the organizational, environmental, professional and child and family factors influencing the timing of admission to hospital for children with serious infectious illness

“…Other parents were unsure about the acceptability of returning to primary care [26] if they remained concerned about their child's condition. Recognising parental expertise [37,46], empowering parents to contradict clinicians [22], establishing and sustaining trust [26] and creating supportive conditions for parents to be able to seek help from their GP or other services early in their child's illness course and to know when to reconsult if they child's illness progresses [33] has the potential to positively influence the child's journey to hospital. Better understanding of doctor-patient relationship, particularly for different SES/ethnic groups [19] is an important component to consider in enhancing service provision.…”

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

“…Olsman et al (submitted) also argued that within such a relationship of trust, critical questions can be asked. This emphasis on trust is underscored by our findings, which suggest that parents have valuable knowledge of their child (Axelsson et al, 2014;Carter et al, 2017;Hostyn & Maes, 2009;de Geeter et al, 2002).) and that parents are more satisfied with the medical care for their child if their knowledge is valued as such by medical and other professionals (Stringer et al, 2018;de Geeter et al, 2002).…”

“…medical professionals in several studies, parents were the experts on their child and applied their expert knowledge in various fields, such as their child's well-being or the lack thereof(Axelsson, Imms, & Wilder, 2014;Carter et al, 2017;Hostyn & Maes, 2009;de Geeter et al, 2002). For example, parents in a qualitative study fulfilled the role of expert during end-of-life decision-making (EoLDM) processes…”

Avaliação da dor em crianças e adolescentes com disfunção cognitiva: uma revisão integrativa

“…(10,18,26) -Manejo da dor incluso no processo de enfermagem. (8,27) -Acolhimento e escuta qualificada . (28) Discussão A análise dos estudos selecionados possibilitou a sintetização em três categorias temáticas que contemplam as características da dor em crianças e adolescentes com déficit cognitivo, a avaliação da dor e instrumentos validados e o papel do enfermeiro no contexto da avaliação da dor.…”