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>
Recruiting Parents to Paediatric Palliative Care Research: Impact of Low Invitation Rates on Sample Bias
Supportive care
Introduction Recruitment in paediatric palliative care is widely reported as challenging, with low rates of invitation by clinicians. The impact of this on sample bias is unknown. Aim(s) and method(s) We studied recruitment to a qualitative interview study about parental decision making for children cared for by a specialist palliative care (PC) team. PC clinicians were encouraged to introduce the study to parents over 12 months. With ethical approval, we used information from the PC team database and feedback from clinicians to explore the impact of low invitation rates on sample bias. Results The families of 519 living and 73 deceased patients were retrospectively identified as potentially eligible for recruitment. Clinicians invited parents of 28 (5.4%) living patients compared to 21 (28.8%) deceased patients (p=0.0001). On multivariable analyses, there was no association between patient demographics and invitation, but for living patients, total and out-of-hours contact time between family and PC team while eligible were independently associated with invitation (p<0.05). The most common reasons clinicians gave for not inviting parents of living and deceased patients were little or no contact with them and perceived burden. Conclusion(s) Invitation rates were especially low among parents of living patients. There was no evidence that this led to major demographic bias. However, the strong influence of family contact may have introduced bias potentially relevant to the project (e.g. patient stability and parent-clinician relationships) that we were unable to measure. We recommend that researchers consider levels of patient contact when planning studies requiring recruitment via clinicians.
2014-03
Crocker JC; Beecham EC; Kelly P; Dinsdale AD; Hemsley J; Jones L; Bluebond-Langner M
Bmj Supportive & Palliative Care
2014
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).
Journal Article
<a href="http://doi.org/10.1136/bmjspcare-2014-000653.17" target="_blank" rel="noreferrer">10.1136/bmjspcare-2014-000653.17</a>
Effective nurse parent communication: A study of parents' perceptions in the NICU environment
Parents
2007
Jones L; Woodhouse D; Rowe J
Patient Education And Counseling
2007
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).
Journal Article
<a href="http://doi.org/10.1016/j.pec.2007.08.014" target="_blank" rel="noreferrer">10.1016/j.pec.2007.08.014</a>
Food, toys, and love: pediatric palliative care
PedPal Lit; Adolescent Adult Child Child; Non-U.S. Gov't United States; Preschool Cultural DiversityFood Humans Infant Interdisciplinary CommunicationLove Needs Assessment Palliative Care/organization & administrationPediatricsPlay and Playthings Research Support
2005
Sourkes B; Frankel L; Brown M; Contro N; Benitz W; Case C; Good J; Jones L; Komejan J; Modderman-Marshall J; Reichard W; Sentivany-Collins S; Sunde C
Current Problems in Pediatric and Adolescent Health Care
2005
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).
Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2005.09.002" target="_blank" rel="noreferrer">10.1016/j.cppeds.2005.09.002</a>
The Alternate Forms Reliability of the Oucher Pain Scale
Pain; PedPal Lit; Pain Management; Pain Scale
The purpose of this study was to determine the adequacy of the alternate forms reliability of three versions of the Oucher pain scale. Because the original large-sized posters were unwieldy for use by nurses with children in clinical settings, it became necessary to reduce it in size. To determine whether the resulting tools were psychometrically equivalent to the original versions of the Oucher, this study was undertaken. In a group of 3- to 12-year-old children who underwent surgical or dental procedures (n = 137), scores were obtained after the procedure on small and large versions of the Oucher. The order of presentation of the two different Ouchers was randomized. Findings revealed that correlation coefficients between the scores provided for the small and large versions of the Oucher were strong, positive, and significant for the Caucasian, African-American, and Hispanic versions in 3- to 12-year-old children. These results provided evidence of the adequacy of the alternate forms reliability of these scales.
2005
Beyer JE; Turner SB; Jones L; Young L; Onikul R; Bohaty B
Pain Management Nursing
2005
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).
Journal Article
<a href="http://doi.org/10.1016/j.pmn.2004.11.001" target="_blank" rel="noreferrer">10.1016/j.pmn.2004.11.001</a>
Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention
Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to 'usual care' or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further.
Sampson E L; Jones L; Thune-Boyle IC; Kukkastenvehmas R; King M; Leurent B; Tookman A; Blanchard MR
Palliative Medicine
2011
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).
Journal Article
<a href="http://doi.org/10.1177/0269216310391691" target="_blank" rel="noreferrer">10.1177/0269216310391691</a>
Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis
To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.
Ngwenya N; Kenten C; Jones L; Gibson F; Pearce S; Flatley M; Hough R; Stirling LC; Taylor RM; Wong G; Whelan J
Journal Of Adolescent And Young Adult Oncology
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).
<a href="http://doi.org/10.1089/jayao.2016.0055" target="_blank" rel="noreferrer">10.1089/jayao.2016.0055</a>
The Under Reporting Of Recruitment Strategies In Research With Children With Life-threatening Illnesses: A Systematic Review
Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. Aim: To explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. Design: Systematic review. Data sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. Results: A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants’ perceptions of potential burdens. Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.
Hudson BF; Oostendorp L; Candy B; Vickerstaff V; Jones L; Lakhanpaul M; Bluebond-Langner M; Stone P
Palliative Medicine
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).
10.1177/0269216316663856
Experiences Of Healthcare Professionals In The Community Dealing With The Spiritual Needs Of Children And Young People With Life-threatening And Life-limiting Conditions And Their Families: Report Of A Workshop
Health Personnel Attitude; Psychology; Religion; Adolescent; Adult; Child; Health Care Personnel; Human; Human Relation; Palliative Therapy; Young Adult
OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice. METHOD: We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. RESULTS: (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by 'being there' and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. CONCLUSIONS: The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.
Llewellyn H; Jones L; Kelly P; Barnes J; O'Gorman B; Craig F; Bluebond-Langner M
Bmj Supportive & Palliative Care
2015
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="https://doi.org/10.1136/bmjspcare-2012-000437" target="_blank" rel="noreferrer"><span class="highlight">10.1136</span>/bmjspcare-2012-000437</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