Decision Making and Future Planning for Children With Complex Illness

Completed

• Conditions: Long-Term Care; Palliative Care
• Interventions: Other: Observation; Other: Interviews; Other: Medical notes review

• Registration Number: NCT02579577
• Lead Sponsor: University of Nottingham

Brief Summary

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.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2015-07-31
• Study Start: 2015-10
• Study First Submitted QC: 2015-10-16
• Study First Posted: 2015-10-19
• Status Verified: 2016-05
• Primary Completion: 2017-01-31
• Study Completion: 2017-01-31
• Last Update Submitted: 2017-05-02
• Last Update Posted: 2017-05-03

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 32

Inclusion Criteria

Not provided

Exclusion Criteria

• Families and significant others of children with ACT Category 1 life-threatening illnesses (Conditions for which curative treatment may be feasible but can fail)
• Participants who do not meet the inclusion criteria.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Decision making cohort	Observation	Any people identified as being important within the network of care for children with life-limiting illnesses.
Decision making cohort	Medical notes review	Any people identified as being important within the network of care for children with life-limiting illnesses.
Decision making cohort	Interviews	Any people identified as being important within the network of care for children with life-limiting illnesses.

Primary Outcome Measures

Name	Time	Method
Observational fieldnotes	Up to 24 months	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.
Semi-Structured Interview Responses	Up to 24 months	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.

Trial Locations

Locations (3)

Sherwood Forest Hospitals NHS Trust; 🇬🇧 Mansfield, United Kingdom

Sheffield Children's Hospital; 🇬🇧 Sheffield, United Kingdom

Nottingham University Hospitals NHS Trust; 🇬🇧 Nottingham, United Kingdom