The experiences of pain for hospitalised children following Haematopoietic Stem Cell Transplantation
AuthorPlummer, Karin Jean
Document TypePhD thesis
Access StatusThis item is embargoed and will be available on 2022-07-27.
© 2020 Karin Jean Plummer
Haematopoietic Stem Cell Transplantation (HSCT) therapy offers the hope of a cure to children with cancer and other serious illnesses. Despite the intensity and toxicity of this treatment, we know little about the pain associated with the complications of HSCT therapy or how pain is managed for these children. The aim of this study was to examine the pain experiences in hospitalised children following HSCT. In this study, the influences of contextual factors on how pain was communicated, assessed and managed in real time within the HSCT unit environment have also been explored. This study utilised mixed methods of data collection conducted in three phases. Phase One was designed as a single site cross-sectional audit of 258 episodes of pain-related care provided to inpatients of the Children’s Cancer Centre (n=54) and paediatric HSCT unit (n=19). Phase Two and Phase Three were conducted as a qualitative case study. The Social Communication Model of Pain provided the conceptual framework for the case study. In Phase Two, ten parent caregivers participated in semi-structured interviews at approximately 30 and 90 days post-transplantation to prospectively assess the impact of pain on children during HSCT therapy. Phase Three consisted of observations of clinical care (n= 90 hours) provided to paediatric HSCT recipients (n=29) by their healthcare providers (n=10). Semi-structured interviews were also conducted with healthcare providers (n=14) to gain their perspectives on pain-related care following HSCT therapy. The cross-sectional audit revealed pain related to medical treatment for cancer was common (n = 146/258, 57%) and persistent. Children’s pain was not consistently recorded by healthcare providers (n = 75/146, 51%). When pain was documented, it was predominantly mild with a median pain intensity score of 1 on an 11-point scale (IQR 1,3). Opioids were the mainstay of pain management interventions (n = 63/112, 56%) along with adjuvant medications (n = 47/112, 42%). Non-pharmacological methods of managing pain were under-represented in this audit (n = 38/146, 26%). There was no statistically significant difference between the pain-related care provided to paediatric HSCT recipients and general oncology patients. Due to limitations in the documentation practices of healthcare providers, it was decided to apply a qualitative lens to investigate the phenomenon of pain in children following HSCT therapy. The findings of the qualitative case study revealed that paediatric HSCT recipients experienced multiple painful complications that occurred sequentially across the trajectory of recovery from HSCT therapy. Pain predominantly occurred as a result of complications of HSCT therapy and related to medical procedures. Children, parent caregivers and healthcare providers also described a distinct entity of psychological pain in paediatric HSCT recipients. Parental presence played a substantive role in mitigating the influence of the clinical environment on children’s painful experiences. Paediatric HSCT recipients needed to be highly motivated to express pain to healthcare providers and parent caregivers in the clinical environment, and their willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their developmental capacity to express the complexity of HSCT related pain, their relationship with the healthcare provider and parent caregiver and a medical event associated with fear and uncertainty. The assessment of pain following transplantation by healthcare providers and parent caregivers was predominantly reliant on observation of children for behaviours indicative of pain rather than the application of validated pain assessment tools, or through the child’s self-report. Without formal measures of the pain experience, judgements regarding the severity of children’s pain were influenced by the high acuity of care post-transplantation and the emotional responses of healthcare providers and parent caregiver from bearing witness to children’s pain. Pain-related care was provided in an environment where healthcare providers worked diligently to relieve pain in children and decisions regarding pain management were shared with parent caregivers, and where appropriate, with children. Due to the severity of pain, opioids were often ineffective alone. However, the effectiveness of pain management was also hindered by misconceptions regarding the titration of opioid therapy and a lack of clinical guidelines for the sustained administration of opioid medications. Healthcare providers also expressed concerns that children were utilising analgesics for psychological gain whilst parent caregivers identified gaps in the provision of non-pharmacological interventions for the management of psychological and procedural pain. These findings provide previously unexplored knowledge regarding the experience and expression of pain in hospitalised children following HSCT therapy. Although there have been advances in paediatric HSCT therapy, children continue to experience persistent and severe pain that is often refractory to management, despite the best efforts of healthcare providers and parent caregivers. Overall, this study has demonstrated that the nature of pain for paediatric HSCT recipients is prolonged and multifaceted, with both physical and psychological contributors to the pain experience. Efforts need to be directed to support children to self-report on their pain experiences and it is recommended that validated methods of assessing pain by healthcare providers and parent caregivers be implemented into clinical practice. There is a pressing need for the creation of evidence-based supportive care guidelines for the management of pain post-transplantation to optimise children’s relief from pain.
KeywordsPain; Children; Cancer; Haematopoietic Stem Cell Transplantation; Bone marrow transplant; Social Communication Model of Pain; Pain assessment; Pain management
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