CAM-Pain-Q Version 1.0
Research type
Research Study
Full title
Addressing Child and Adolescent Musculoskeletal Pain: CAM-Pain-Q
IRAS ID
330043
Contact name
Kate Dunn
Contact email
Sponsor organisation
Directorate of Research Innovation and Engagement
Duration of Study in the UK
0 years, 5 months, 30 days
Research summary
Pains in the feet, knees or back (called musculoskeletal pains) are common in children. They are in the top ten causes of disability in children across the world. Despite this, there is hardly any research about childhood musculoskeletal pain. We know very little about the children with musculoskeletal pain who visit the doctor, the treatments and advice given to families, which children get better and which do not, and the experiences of families.
This study is part of a larger research programme to develop resources to support families and improve the management of musculoskeletal pain in future.
This project aims to learn about what happens when children with painful joints and muscles visit primary care and what children and parents think about their pain and clinic visits.
We will involve fifteen children or young people (aged 8-18) with musculoskeletal (MSK) pain who have been seen in primary care within the previous 3 months and their parents/guardians.
These children or young people will be asked to keep a 3 week diary about their pain and will then be asked to take part in an interview. We will also interview parents/guardians. These interviews will ask about children, young people and parents/guardians' pain information needs, if these needs were met and what information they would want in future.Data from these interviews will be anonymised and analysed using thematic analysis.
A patient public involvement and engagement (PPIE) group comprised of children and young people has been involved in the design of study materials including storyboards (pictures/text showing scenarios of children/young people seeing their doctor which will be discussed in interviews), recruitment materials and wording of interviews.
The results of the study will be shared in journal articles, presented at conferences and made available through websites, social media and events.
Lay summary of study results: The results of the study were reached through thematic analysis of the study data (Braun & Clarke 2019), which was collected through semi-focused interviews with children and young people (CYP), along with their parents, and focus groups of healthcare professionals (HCP).
The following themes and nested sub-themes emerged from the semi-structured interviews with children and young people.
• The experience of musculoskeletal pain for children and young people:
o “Character of pain”, which described the intensity and nature of MSK pain in CYP.
o “Individual impacts of musculoskeletal pain”, describing how MSK pain interferes with and affects the lives of CYP.
o “Support and management for pain”, describing the existing support CYP are finding for their MSK pain within their social and family groups.• Communicating about pain:
o “Pain is difficult to understand on the outside”, describing the difficulties CYP have in helping others understand the realities of their pain.
o “Disclosure – talking to others about their pain, what hinders and what helps”, in which CYP address the process and realities of opening up to others about their pain.
o “Patient pain language”, where CYP and parents discussed the specifics of how CYP communicate about pain.
o “Reliance on guardians for communication”, where CYP and parents described the frequent times when CYP needed their parents to help them effectively communicate about pain.• Experience and understanding of healthcare:
o “Understanding and expectation of healthcare”.
o “Pushing against the door – the process of getting consultation for pain”, describing the perceived difficulties in having CYP MSK pain taken seriously in primary care.
o “Conversation and decision making”, discussing the communication styles and realities needed in CYP MSK primary care consultations.
o “Advice and management”, CYP and parents describe the advice and management received in primary care, and whether it met their needs and expectations.• Pain management and information:
o “Current management and resources for pain”.
o “What resources do patient want?”.
o “Best medium and format for resources”.The following themes and nested sub-themes emerged from the focus groups with healthcare professionals.
• Patient pain experiences, expectations and impacting factors:
o “Presentation of pain”, describing how CYP patients present pain alongside their parents.
o “Patient understanding and expectations of pain and recovery”.
o “Concerns of patients”.
o “Normalising pain”, where HCPs discussed what they felt was a widespread need to de-escalate responses to pain; need to address “the worried well”.
o “Psychosocial complications”, discussing the various psychological and social factors influencing CYP and parental responses to pain and healthcare.• HCP management of patient expectations.
o “Self-management of health”; how patients were managing their pain prior to consultation.
o “Managing patient expectations of healthcare”.• Management of CYP pain in consultations:
o “Management of patients with pain”, where HCPs described how they communicate with and manage CYP patients with pain, and frequently how they also manage their parents.
o “Psychosocial effects on HCP’s management”, discussing the different psychological, social and cultural elements affecting the success of HCP pain management.
o “HCPs facilitating useful conversations with CYP and parents”, in which HCPs describe their position as mediator and facilitator in triadic consultations.• Barriers and facilitators of effective management of CYP pain in primary care:
o “Standard of management of MSK pain in CYP currently”.
o “Management journeys and continuity of care”.• Information and management resources:
o “Current information and management signposting”,
o “Challenges in signposting information”,
o “Ideas for information resources”,
o “Ideas for format of information”,
o “Measure of resource effectiveness”.Both groups reported the importance and complexities of communication when managing childhood and adolescent musculoskeletal pain in primary care. It was also acknowledged that communicating about pain is difficult for young people.
Alongside communication, health literacy and lack thereof was commonly discussed, with many issues reported by CYP, parents and HCPs being related to expectations of healthcare not matching experience. Similarly CYP and parent expectations of the progression of or explanation for CYP MSK conditions also frequently did not match experience.
Concordance between CYP, parents and HCPs was a complex issue, particularly considering the frequently triadic nature of communication in this context.
The results point to main areas of improvement being in raising awareness of pain management and understanding of healthcare systems, while also emphasising the importance of communication in primary care settings and particularly treating CYP patients with a holistic approach rather than a condition-specific one.REC name
London - Fulham Research Ethics Committee
REC reference
23/PR/1307
Date of REC Opinion
23 Jan 2024
REC opinion
Further Information Favourable Opinion