Research barriers in children and young people with life-limiting conditions: a survey
Adolescent; Child; Humans; Palliative Care/methods; Research Design; Surveys and Questionnaires; Clinical Decisions; Ethics; Methodological Research; Paediatrics; Symptom Management; Symptoms
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ Support Palliat Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Research barriers in children and young people with life-limiting conditions: a survey
clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ Supportive & Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Pharmacological Interventions For Pain In Children And Adolescents With Life-limiting Conditions
Drug Efficacy; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; 52-26-6 (morphine); 57-27-2 (morphine); 73-78-9 (lidocaine); 76-42-6 (oxycodone); 76-57-3 (codeine); 76-99-3 (methadone); 94-09-7 (benzocaine); 94-24-6 (tetracaine); 103-90-2 (paracetamol); 124-90-3 (oxycodone); 125-56-4 (methadone); 133-16-4 (chloroprocaine); 136-47-0 (tetracaine); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 1134-47-0 (baclofen); 1333-08-0 (benzocaine); 2180-92-9 (bupivacaine); 3858-89-7 (chloroprocaine); 15307-79-6 (diclofenac); 15307-86-5 (diclofenac); 15687-27-1 (ibuprofen); 18010-40-7 (bupivacaine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 31121-93-4 (ibuprofen); 38396-39-3 (bupivacaine); 40391-99-9 (pamidronic Acid); 52485-79-7 (buprenorphine); 53152-21-9 (buprenorphine); 55750-21-5 (bupivacaine); 56934-02-2 (lidocaine); 57248-88-1 (pamidronic Acid); 66376-36-1 (alendronic Acid); 74103-06-3 (ketorolac); 79261-49-7 (ibuprofen); 527688-20-6 (ibuprofen); Alendronic Acid/ct [clinical Trial]; Alendronic Acid/dt [drug Therapy]; Analgesia; Baclofen/ct [clinical Trial]; Baclofen/dt [drug Therapy]; Benzocaine/ct [clinical Trial]; Benzocaine/dt [drug Therapy]; Bupivacaine/ct [clinical Trial]; Bupivacaine/dt [drug Therapy]; Buprenorphine/ct [clinical Trial]; Buprenorphine/dt [drug Therapy]; Cerebral Palsy; Chloroprocaine/ct [clinical Trial]; Chloroprocaine/dt [drug Therapy]; Codeine/ct [clinical Trial]; Codeine/dt [drug Therapy]; Diclofenac/ct [clinical Trial]; Diclofenac/dt [drug Therapy]; Drug Clearance; Drug Safety; Fentanyl/ct [clinical Trial]; Fentanyl/dt [drug Therapy]; Functional Status; Human; Ibuprofen/ct [clinical Trial]; Ibuprofen/dt [drug Therapy]; Ketorolac/ct [clinical Trial]; Ketorolac/dt [drug Therapy]; Length Of Stay; Lidocaine/ct [clinical Trial]; Lidocaine/dt [drug Therapy]; Methadone/ct [clinical Trial]; Methadone/dt [drug Therapy]; Morphine/ct [clinical Trial]; Morphine/dt [drug Therapy]; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; Osteogenesis Imperfecta; Oxycodone/ct [clinical Trial]; Oxycodone/dt [drug Therapy]; Pain Intensity; Pain Severity; Pamidronic Acid/ct [clinical Trial]; Pamidronic Acid/dt [drug Therapy]; Paracetamol/ct [clinical Trial]; Paracetamol/dt [drug Therapy]; Priority Journal; Psychological Well-being; Quality Of Life; Randomized Controlled Trial (topic); Review; Risk Benefit Analysis; Tetracaine/ct [clinical Trial]; Tetracaine/dt [drug Therapy]; Treatment Outcome
Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed, however the evidence base to guide clinicians is limited. There is a clear need for evidence from a systematic review to inform prescribing. Objectives: To evaluate the evidence on the effectiveness of different pharmacological interventions used for pain in CYP with LLCs. Search methods: The following electronic databases were searched up to December 2014: CENTRAL (in the Cochrane Library), MEDLINE, EMBASE, PsycINFO and CINAHL. In addition, we searched conference proceedings and reference lists of included studies. For completeness, we also contacted experts in the field. No language restrictions were applied. Selection criteria: Randomised controlled trials (RCTs), quasi-randomised studies and other studies that included a clearly defined comparator group were included. The studies investigated pharmacological treatments for pain associated with LLCs in CYP. The treatment included those specifically developed to treat pain and those that acted as an adjuvant, where the treatment was not primarily developed to treat pain but has pain relieving properties. The LLC was identified by its inclusion in the Richard Hain Directory of LLCs. Data collection and analysis: Citations were screened by five review authors. Data were extracted by one review author and checked by a second. Two review authors assessed the risk of bias of included studies. A sufficient number of studies using homogeneous outcomes was not identified so a meta-analysis was not possible. Main results: We identified 24,704 citations from our database search. Nine trials with 379 participants fulfilled our inclusion criteria. Participants had cerebral palsy (CP) in five of the studies and osteogenesis imperfecta (OI) in the other four. Participants across the trials ranged in age from 2 to 19 years. All studies, apart from one cross-over trial, were parallel designed RCTs. Three of the trials on CP evaluated intrathecal baclofen (ITB) and two botulinum toxin A (BoNT-A). All of the OI trials evaluated the use of bisphosphonates (two alendronate and one pamidronate). No trials were identified that evaluated a commonly used analgesic in this patient group. Pain was a secondary outcome in five of the eight identified studies. Overall the quality of the trials was mixed. Only one study involved over 100 participants. For the two ITB studies for pain in CP, in the same study population but assessed at different time points in their disease, both found an effect on pain favouring the intervention compared to the control group (standard care or placebo) (mean difference (MD) 4.20, 95% confidence interval (CI) 2.15 to 6.25; MD 26.60, 95% CI 2.61 to 50.59, respectively). In these studies most of the adverse events related to the procedure or device for administration rather than the drug, such as swelling at the pump site. In one trial there were also eight serious adverse effects; these included difficulty swallowing and an epileptic seizure. The trial did not state if these occurred in the intervention group. At follow-up in both BoNT-A trials there was no evidence of a difference in pain between the trial arms among CP participants. The adverse events in the BoNT-A trials mostly involved those who received the intervention drug and involved seizures. Gastrointestinal problems were the most frequent adverse event in those who received alendronate. The trial investigating pamidronate found no evidence of a difference in pain compared to the control group. No adverse events were reported in this trial. Authors' conclusions: Published, controlled evidence on the pharmacological interventions for pain in CYP with LLCs is limited. The evidence that is currently available evaluated pain largely as a secondary outcome and the drugs used were all adjuvants and not always commonly used in general paediatric palliative care for p
Beecham E; Candy B; Howard R; McCulloch R; Laddie J; Rees H; Vickerstaff V; Bluebond-Langner M; Jones L
Cochrane Database Of Systematic Reviews
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1002/14651858.CD010750.pub2
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Advance Care Planning; Children and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Health Expectations
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1111/hex.12500