PhD Study : Developing methodologies for the objective and subjective measurement of sleep in parents of children with medical complexity: a scoping study and pilot

Summary

Background to the project:

Parental caregivers of youth with chronic or life-limiting conditions often report suffering ill-health as a result of their caregiving [3,5], of which lack of sleep quality, shorter sleep and sleep disturbance are significant [4,5,11,13,14,16,20]. Addressing poor sleep outcomes amongst caregiver groups is important to ensure the quality of parenting [15], the quality of care [5] and the ongoing health of caregivers [3,5,15]. The majority of interventions to improve caregiver sleep are directed towards improvement of child sleep first, with improvement of caregiver sleep achieved as a secondary outcome (e.g. [4,12,20]).

These interventions overlook the nature of the causes of sleep disturbance which may be related to more than the needs of the child, including parent stress [15], distress and anxiety [3], as well as the relationship between intrenched poor sleep hygiene (common in caregivers [5,7]) and persistent insomnia [8]. Further, there are no solutions within the literature for supporting parent sleep when the night-time needs of the child cannot be decreased [5], for whatever reason.

Previous studies have relied on self-report of sleep outcomes, or qualitative examination of sleep (e.g. [4,20]). There is a clear role for the measurement of sleep in a more objective, quantitative way, which has been done to good effect in studies of parents healthy children [18] as well as other caregiver groups [19].

This MRes will address these gaps by working between the School of Psychology and the School of Computing at Ulster University to determine how best to objectively and subjectively measure sleep outcomes amongst a group of parents of children with medically complex conditions. It is anticipated that some of this work will be desk based, but the latter part of this project will involve a small pilot study of sleep data collection amongst parents and gathering of participant feedback on measures used.

Objectives of the research:

Using a previously developed framework for appraising sensor technology [2], determine the most appropriate sleep sensor(s) for use with caregivers of children with medical complexity (children with cerebral palsy, cancer, stroke, epilepsy).

Pilot sleep data collection amongst a group of parental caregivers of children with medical complexity using self-report and biometric measures.

Develop an understanding of how mental health and sleep function can be measured in tandem amongst a group of parental caregivers of children with medical complexity.

Methods to be used:

Using the framework set out by Caulfield et al., (2019), the student will review both commercially available and research grade technology for the measurement of sleep outcomes in parental caregivers, in tandem with a review of sleep measures, some of which have been discussed in a recent systematic review [5]. Once suitable measures have been identified a small group of parents (n=7-10) will be invited to pilot use of these measures.

Participants will be recruited from charitable organizations supporting parents of children with medical complexity. Data collection will take place over a seventy-two hour period.

Participants will be given a battery of questionnaires at baseline and at the end of the study. The exact measures for sleep will be determined as part of the early part of the MRes, but may include the Pittsburgh Sleep Quality Index [1], the Iowa Fatigue Scale [6] and perhaps some sort of actigraphy unit to objectively measure sleep and exercise habits [18].

Mental health will be measured using the GAD-7 [17] and the PHQ-9 [10] as both measures are routinely used as screening tools for psychological services which support caregivers. Caregiver burden will be assessed using the Adult carers quality of life questionnaire [9].

This project involves supervision from the School of Psychology and the School of Computing and the student will have opportunities to learn about research from both schools. The work can be undertaken as a stand-alone MRes project or as pilot work for a larger project which can be used towards attainment of a PhD in psychology.

Skills required of applicant:

Excellent skills in communication of research findings both in presentation(s) and written document(s).

Understanding of quantitative data analysis.

Good skills in reviewing psychological and computing research articles.

Good skills in word processing and use of SPSS.

Interest in health research.

Essential criteria

Applicants should hold, or expect to obtain, a First or Upper Second Class Honours Degree in a subject relevant to the proposed area of study.

We may also consider applications from those who hold equivalent qualifications, for example, a Lower Second Class Honours Degree plus a Master’s Degree with Distinction.

In exceptional circumstances, the University may consider a portfolio of evidence from applicants who have appropriate professional experience which is equivalent to the learning outcomes of an Honours degree in lieu of academic qualifications.

Funding and eligibility