Protective parents and permissive children: What qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials

Frances C. Sherratt*, Louise Roper, Simon R. Stones, Flora McErlane, Matthew Peak, Michael W. Beresford, Helen Foster, Athimalaipet V. Ramanan, Madeleine Rooney, Eileen Baildam, Bridget Young

*Corresponding author for this work

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Abstract

Background: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial. In the context of a feasibility study to inform the design of a proposed randomised controlled trial of corticosteroid induction regimen in JIA, we explored families' perspectives on the proposed trial and on JIA trials generally. Methods: We analysed interviews with 27 participants (8 CYP aged 8-16 years and 19 parents) from four UK paediatric rheumatology centres. CYP had recently received corticosteroids to treat JIA. Audio-recorded interviews were transcribed and analysed thematically, drawing on the Framework Method. Results: Both parents and CYP were capable of engaging with the logic of the proposed trial but pointed to challenges with its design. Treatment preferences influenced willingness to participate in the proposed trial. The preferences of older children and their parents often differed, with CYP being more willing to participate in the proposed trial than parents. Families' current treatment preferences were largely informed by past positive and negative treatment experiences. Some participants also indicated that their treatment preferences were influenced by those of their clinicians. Conclusion: Previous research has typically focused on deficits in patients' understandings of trials. We found that both parents and CYP understood trial concepts and were able to identify potential flaws in the proposed trial. We propose recommendations to optimise the design of a planned corticosteroid induction regimen trial in JIA. Accessing both parents' and CYP's perspectives helps to identify and address recruitment challenges, which will ultimately optimise informed consent and future recruitment.

Original languageEnglish
Article number76
JournalPediatric Rheumatology
Volume16
Issue number1
DOIs
Publication statusPublished - 04 Dec 2018

Fingerprint

Juvenile Arthritis
Parents
Interviews
Adrenal Cortex Hormones
Feasibility Studies
Pediatrics
Therapeutics
Rheumatology
Informed Consent
Patient Selection
Randomized Controlled Trials

Keywords

  • Children
  • Corticosteroids
  • Feasibility
  • JIA
  • Juvenile idiopathic arthritis
  • Parents
  • Patients
  • Qualitative
  • Randomised controlled trial
  • Recruitment

Cite this

Sherratt, Frances C. ; Roper, Louise ; Stones, Simon R. ; McErlane, Flora ; Peak, Matthew ; Beresford, Michael W. ; Foster, Helen ; Ramanan, Athimalaipet V. ; Rooney, Madeleine ; Baildam, Eileen ; Young, Bridget. / Protective parents and permissive children: What qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials. In: Pediatric Rheumatology. 2018 ; Vol. 16, No. 1.
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title = "Protective parents and permissive children: What qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials",
abstract = "Background: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial. In the context of a feasibility study to inform the design of a proposed randomised controlled trial of corticosteroid induction regimen in JIA, we explored families' perspectives on the proposed trial and on JIA trials generally. Methods: We analysed interviews with 27 participants (8 CYP aged 8-16 years and 19 parents) from four UK paediatric rheumatology centres. CYP had recently received corticosteroids to treat JIA. Audio-recorded interviews were transcribed and analysed thematically, drawing on the Framework Method. Results: Both parents and CYP were capable of engaging with the logic of the proposed trial but pointed to challenges with its design. Treatment preferences influenced willingness to participate in the proposed trial. The preferences of older children and their parents often differed, with CYP being more willing to participate in the proposed trial than parents. Families' current treatment preferences were largely informed by past positive and negative treatment experiences. Some participants also indicated that their treatment preferences were influenced by those of their clinicians. Conclusion: Previous research has typically focused on deficits in patients' understandings of trials. We found that both parents and CYP understood trial concepts and were able to identify potential flaws in the proposed trial. We propose recommendations to optimise the design of a planned corticosteroid induction regimen trial in JIA. Accessing both parents' and CYP's perspectives helps to identify and address recruitment challenges, which will ultimately optimise informed consent and future recruitment.",
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Protective parents and permissive children: What qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials. / Sherratt, Frances C.; Roper, Louise; Stones, Simon R.; McErlane, Flora; Peak, Matthew; Beresford, Michael W.; Foster, Helen; Ramanan, Athimalaipet V.; Rooney, Madeleine; Baildam, Eileen; Young, Bridget.

In: Pediatric Rheumatology, Vol. 16, No. 1, 76, 04.12.2018.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Protective parents and permissive children: What qualitative interviews with parents and children can tell us about the feasibility of juvenile idiopathic arthritis trials

AU - Sherratt, Frances C.

AU - Roper, Louise

AU - Stones, Simon R.

AU - McErlane, Flora

AU - Peak, Matthew

AU - Beresford, Michael W.

AU - Foster, Helen

AU - Ramanan, Athimalaipet V.

AU - Rooney, Madeleine

AU - Baildam, Eileen

AU - Young, Bridget

PY - 2018/12/4

Y1 - 2018/12/4

N2 - Background: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial. In the context of a feasibility study to inform the design of a proposed randomised controlled trial of corticosteroid induction regimen in JIA, we explored families' perspectives on the proposed trial and on JIA trials generally. Methods: We analysed interviews with 27 participants (8 CYP aged 8-16 years and 19 parents) from four UK paediatric rheumatology centres. CYP had recently received corticosteroids to treat JIA. Audio-recorded interviews were transcribed and analysed thematically, drawing on the Framework Method. Results: Both parents and CYP were capable of engaging with the logic of the proposed trial but pointed to challenges with its design. Treatment preferences influenced willingness to participate in the proposed trial. The preferences of older children and their parents often differed, with CYP being more willing to participate in the proposed trial than parents. Families' current treatment preferences were largely informed by past positive and negative treatment experiences. Some participants also indicated that their treatment preferences were influenced by those of their clinicians. Conclusion: Previous research has typically focused on deficits in patients' understandings of trials. We found that both parents and CYP understood trial concepts and were able to identify potential flaws in the proposed trial. We propose recommendations to optimise the design of a planned corticosteroid induction regimen trial in JIA. Accessing both parents' and CYP's perspectives helps to identify and address recruitment challenges, which will ultimately optimise informed consent and future recruitment.

AB - Background: Patient recruitment can be very challenging in paediatric studies, especially in relatively uncommon conditions, such as juvenile idiopathic arthritis (JIA). However, involving children and young people (CYP) in the design of such trials could promise a more rapid trajectory towards making evidence-based treatments available. Studies involving CYP are advocated in the literature but we are not aware of any early stage feasibility studies that have qualitatively accessed the perspectives of parents and CYP with a long term condition to inform design and conduct of a trial. In the context of a feasibility study to inform the design of a proposed randomised controlled trial of corticosteroid induction regimen in JIA, we explored families' perspectives on the proposed trial and on JIA trials generally. Methods: We analysed interviews with 27 participants (8 CYP aged 8-16 years and 19 parents) from four UK paediatric rheumatology centres. CYP had recently received corticosteroids to treat JIA. Audio-recorded interviews were transcribed and analysed thematically, drawing on the Framework Method. Results: Both parents and CYP were capable of engaging with the logic of the proposed trial but pointed to challenges with its design. Treatment preferences influenced willingness to participate in the proposed trial. The preferences of older children and their parents often differed, with CYP being more willing to participate in the proposed trial than parents. Families' current treatment preferences were largely informed by past positive and negative treatment experiences. Some participants also indicated that their treatment preferences were influenced by those of their clinicians. Conclusion: Previous research has typically focused on deficits in patients' understandings of trials. We found that both parents and CYP understood trial concepts and were able to identify potential flaws in the proposed trial. We propose recommendations to optimise the design of a planned corticosteroid induction regimen trial in JIA. Accessing both parents' and CYP's perspectives helps to identify and address recruitment challenges, which will ultimately optimise informed consent and future recruitment.

KW - Children

KW - Corticosteroids

KW - Feasibility

KW - JIA

KW - Juvenile idiopathic arthritis

KW - Parents

KW - Patients

KW - Qualitative

KW - Randomised controlled trial

KW - Recruitment

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U2 - 10.1186/s12969-018-0293-2

DO - 10.1186/s12969-018-0293-2

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