An observational study in Long-Term Care and Palliative Care, sponsored by University of Nottingham. Completed at 3 sites in United Kingdom. Open to participants aged 28 Days and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2017-05-03.
Sponsored by University of Nottingham · Observational
The population of children with life-limiting illnesses (LLI) in England is increasing and there is growing need to improve the quality of children's palliative care. Families of children with LLI are confronted with many care decisions for their children, such as whether and when to commence artificial nutrition or ventilation. They may also have the opportunity to consider the care that may be appropriate for their child in the future. Despite the important decisions families and professionals are required to make, there is little empirical evidence regarding the process of decision making and future planning for this population. Few studies have investigated the perspectives of multiple stakeholders and none have addressed multiple perspectives longitudinally. Therefore the relational and contextual aspects of decision making and future planning for children with LLI have as yet not been identified.
A multiple embedded case study utilising ethnographic methods (semi-structured interviews, observation and notes review) is proposed to address this knowledge gap. Families of children with LLI cared for in either of two participating hospitals will be recruited and followed up for up to 12 months. The family will be invited to nominate 'significant others' (e.g. relatives, friends, health care professionals) who assist them in decision making and future planning, to participate in the study. Outpatient clinic appointments or ward rounds during periods of hospitalisation will be observed and semi-structured interviews will be conducted approximately three times with each participant. Medical notes will be reviewed at the end of the study.
This research will enable a better understanding of the experiences and preferences for engaging in decision making and future planning from the perspectives of all stakeholders. It will also provide an awareness of the communication practices involved in discussions and the networks of care surrounding children with LLI, including specific support needs in relation to their role.
University of Nottingham is the lead sponsor of 463 studies on the registry; 78 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Each case will be centred around a child with a life-limiting illness and their parents who will have been identified as eligible by their usual care team. Additional significant others who are important in their decision making and future planning will be identified by the family and will ideally include at least one health professional. However, the composition of each case will be determined by the child and family and may involve only them. Nominated 'significant others' may include extended family, peers, ministers of religion, key workers etc.
Inclusion criteria - Parent
Inclusion criteria - Child
Inclusion criteria - Significant Others/Professionals
Exclusion Criteria:
Any people identified as being important within the network of care for children with life-limiting illnesses.
Other: Observation · Other: Interviews · Other: Medical notes review
Observation of clinic appointments and ward rounds if the child is admitted to hospital during the study period.
Semi-structured interviews will be conducted approximately 3 times during the study period with each participant.
The child's electronic medical record will be accessed periodically to identify any planned appointments or periods of hospitalisation and their medical notes will also be reviewed at the end of the study.
Semi-Structured Interview Responses
Interviews will be semi-structured, with a broad opening question asking the participant about the child at the centre of the case; both in terms of their illness and their context (family, personality, values and goals). Although the topics of decision making and future planning will be covered within the interview, the way in which these are initiated are likely to be different for each participant and asked in relation to the responses given to the opening question.
Time frame: Up to 24 months
Observational fieldnotes
Observations will occur at clinic appointments and ward rounds and will aim to identify the communication processes involved in decision making and how each individual involved participates.
Time frame: Up to 24 months
The record gives a start of Oct 2015, a primary completion of Jan 2017 and a completion of Jan 2017. It does not say whether these dates are actual or estimated.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in May 2016. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.