Decision Making and Future Planning for Children With Complex Illness

Decision Making and Future Planning for Children With Complex Illnesses: a Qualitative Multi-stakeholder, Longitudinal Study.

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.

Study Overview

• Status: Completed
• Conditions: Palliative Care; Long-Term Care
• Intervention / Treatment: Other: Observation; Other: Interviews; Other: Medical notes review

• Study Type: Observational
• Enrollment (Actual): 32

Contacts and Locations

Study Locations

• United Kingdom
  • Mansfield, United Kingdom
    • Sherwood Forest Hospitals NHS Trust
  • Nottingham, United Kingdom
    • Nottingham University Hospitals Nhs Trust
  • Sheffield, United Kingdom
    • Sheffield Children's Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 4 weeks and older (Child, Adult, Older Adult)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

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.

Description

Inclusion criteria - Parent

• Their child must be between 28 days and 18 years old
• Their child must have a LLI within categories 2-4 (Association for Children with Life-threatening and Terminal Conditions and their Families, 2004) (see page 8)
• Child must be under the care of a consultant at either of the two NHS Trusts included in the study
• The parent must be aware of the child's LLI diagnosis
• Participants must speak English. This is both due to resource constraints and due to the sensitive topic such that difficulties in translating questions sensitively may cause greater distress to participants.

Inclusion criteria - Child

• Children will be classed as participants if their parent is a participant and consents to their child's medical notes being accessed.
• For children to participate in the interview component of the study, they must be over the age of 7 years and cognitively able to provide their own assent (or consent, if over 16 years old)
• Parents must have agreed to the child's participation if they are under 16 years old
• Participants must speak English or be able to communicate in some way using alternative or augmentative communication.

Inclusion criteria - Significant Others/Professionals

• Significant others must have been identified by the eligible child and/or parents as being important in their decision making and future planning
• Participants must speak English
• Participants must be over the age of 7 years and provide their own assent alongside parental consent (if under 16 years old) or provide consent if they are over the age of 16 years (in the case of a friend or sibling being nominated as a 'significant other').

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 Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

Decision making cohort; Any people identified as being important within the network of care for children with life-limiting illnesses.

Other: Observation; Observation of clinic appointments and ward rounds if the child is admitted to hospital during the study period.; Other: Interviews; Semi-structured interviews will be conducted approximately 3 times during the study period with each participant.; Other: Medical notes review; 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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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.	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.	Up to 24 months

Collaborators and Investigators

• Sponsor: University of Nottingham
• Investigators: Principal Investigator: Bridget Johnston, Professor, University of Nottingham

Study record dates

Study Major Dates

• Study Start: October 1, 2015
• Primary Completion (Actual): January 31, 2017
• Study Completion (Actual): January 31, 2017

Study Registration Dates

• First Submitted: July 31, 2015
• First Submitted That Met QC Criteria: October 16, 2015
• First Posted (Estimate): October 19, 2015

Study Record Updates

• Last Update Posted (Actual): May 3, 2017
• Last Update Submitted That Met QC Criteria: May 2, 2017
• Last Verified: May 1, 2016

More Information

Terms related to this study

• Other Study ID Numbers: 15068