Complex healthcare in the home
Lead Research Organisation:
University of Oxford
Department Name: Experimental Psychology
Abstract
In many spheres, such as healthcare and finance, people are being required to carry out complex tasks and make increasingly complex decisions that were once taken by professionals. In healthcare family members are carrying out increasingly complex care for their relatives in the home. Previously many of these patients would have been cared for in a hospital setting by professionals or would not have survived. There is an urgent need to understand how families can be better equipped to manage their care in the future. This DPhil will explore the challenges lay people face when carrying out complex medical care in the home environment, bringing social science theory and research to bear on the challenges facing families.
The care provided by parents for children with chronic or life-limiting conditions can be particularly complex. Tasks carried out by parents include gastrostomy feeding and tracheostomy care. There are a number of psychological issues involved in preparing and supporting parents to provide complex healthcare, such as the optimal conditions for learning and memory, the nature of expertise, and the impact of stress on performance.
In the first year of my DPhil I have conducted two clinical studies exploring parents' experiences of providing complex care, their views on training and the problems occurring with respect to unsafe care. In my second and third year, I am testing and developing interventions informed by cognitive psychology to better prepare parents to provide safe medical care in the home. In the final year of my DPhil I will pilot an intervention in the NHS with a group of parents.
The care provided by parents for children with chronic or life-limiting conditions can be particularly complex. Tasks carried out by parents include gastrostomy feeding and tracheostomy care. There are a number of psychological issues involved in preparing and supporting parents to provide complex healthcare, such as the optimal conditions for learning and memory, the nature of expertise, and the impact of stress on performance.
In the first year of my DPhil I have conducted two clinical studies exploring parents' experiences of providing complex care, their views on training and the problems occurring with respect to unsafe care. In my second and third year, I am testing and developing interventions informed by cognitive psychology to better prepare parents to provide safe medical care in the home. In the final year of my DPhil I will pilot an intervention in the NHS with a group of parents.
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000649/1 | 01/10/2017 | 30/09/2027 | |||
| 1925871 | Studentship | ES/P000649/1 | 01/10/2017 | 11/08/2021 | Bethan Page |
| Description | In the first section of my thesis we identified a number of areas for improvement in the care of children with feeding tubes and children with mechanical aids for breathing (long term ventilation). Key areas for improvement to current services in England are: i) training & support of parents ii) training for nurses and carers in the community iii) availability and reliability of equipment iv) co-ordination of care. Our analysis of parent interviews revealed a significant burden placed on parents. Parents caring for medically complex children have significant responsibilities including doing medical procedures, managing emergencies, co-ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings. Over time parents become experts in their child's medical needs and make sense of their new normal. In an online survey we found parents feel scared and overwhelmed especially in the first few weeks caring for their medically complex children at home. Experiences of training are highly variable, and sometimes poor. In a series of online experiments, we found that adding images and videos to an information booklet on gastrostomy care significantly improved memory and understanding of the information. Retrieval practice (practicing recalling information) did not significantly improve memory and understanding the information. In this last stage of my theses I developed a programme to train and support families new to feeding tube care with parents and colleagues from the hospital and community services. We created 20 videos to train and support parents new to gastrostomy care, and have started piloting hands-on practice with 3D-printed models to help parents with their learning. The videos have been created with input from nurses in the community and hospital, families, paediatricians and a surgeon and surgical nurse. The content of the videos was informed by a survey with 150 parents who care for children with gastrostomies. The videos were evaluated with families and healthcare professional. Families found the videos enpowering and nearly all families and healthcare professionals indicated they would recommend the videos to others. Healthcare professionals felt the videos were suitable for implementing into routine practice. The videos are available here: https://www.oxstar.ox.ac.uk/more/supporting-parents/watch-the-videos |
| Exploitation Route | Healthcare systems across England can learn from our two papers analysing incident reports for children with feeding tubes and on long term ventilation who are cared for at home- the analysis identifies key areas where improvements to services are needed and offers some practical recommendations. The John Radcliffe hospital in Oxford is continuing to pilot simulation training (hands on training with 3D-printed models) with families. The educational videos will be updated by the surgical team to keep them up-to-date and make improvements over time, providing longer term sustainability to the work. This model of co-producing training videos with families could be used by other hospitals and community services across the country, and is also relevant to the care of older adults who need complex medical care at home, as well as children. There is a need to create more videos and training resources for other types of medical tasks, e.g. home oxygen, long-term ventilation, bowel washouts etc. We found evidence that videos and images can help learning and understanding. At present, patient information booklet often lack clear accompanying photos and videos. Healthcare services need to co-produce resources with families and evaluate their impact. |
| Sectors | Healthcare |
| URL | https://www.oxstar.ox.ac.uk/more/supporting-parents |
| Description | We have produced a set of 20 videos to train and support parents new to caring for a children with a gastrostomy (type of feeding tube). These are now routinely be used with families across our region (Thames Valley) and by other teams outside our region. We have further dissemination planned and hope they will be used by families across the country. They will also be useful for training paid carers in the community (schools, respite services) and healthcare professionals who support these families. |
| Sector | Healthcare |
| Impact Types | Policy & public services |
| Description | Kellogg College Travel Grant |
| Amount | £450 (GBP) |
| Organisation | University of Oxford |
| Department | Kellogg College |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2020 |
| End | 03/2020 |
| Description | Overseas Institution Visit |
| Amount | £1,950 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2020 |
| End | 03/2020 |
| Description | Specialised Paediatric Care Stakeholder group |
| Organisation | Oxford Academic Health Science Network |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | I was a member of the Specialist Paediatric Care programme at Oxford Patient Safety Collaborative at Oxford Academic Health Science Network (AHSN). As part of this collaborative we developed an information booklet for parents new to gastrostomy care (type of feeding tube) used by hospital and community services across the region (Oxfordshire, Berkshire, Buckinghamshire). I wrote a section for the booklet on managing your child's distress and self-care informed by the literature and a survey I did with families. As part of this network I interviewed parents at two training days (one for long-term ventilation and another for gastrostomy care) in front of 50+ clinicians on their experiences of caring for their child, and what healthcare professional could do to better support them. |
| Collaborator Contribution | The stakeholder group organised three training days for improving the skills of multidisciplinary healthcare professionals from the community and hospital across the region caring for children on long-term ventilation and feeding tubes. The group also produced a training booklet for parents on gastrostomy care, reviewed by families and multidisciplinary healthcare professionals and a standardised care pathway for children on long-term ventilation. |
| Impact | The group met every three months for two years and comprises parents, paediatric surgeons, paediatricians, researchers, specialist children's nurses and dieticians from the acute, community and palliative sectors from the Oxford Academic Health Science Network (AHSN). The group produced : -an information booklet for parents new to gastrostomy care (type of feeding tube) -a new pathway for children on long term ventilation (mechanical aids for breathing) -ran three training days for healthcare professionals across the region |
| Start Year | 2017 |
| Description | Article in national news |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | An article was written in the Independent based on our academic paper on safety concerns for children cared for at home who need mechanical aids for breathing. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.independent.co.uk/news/health/patient-safety-children-ventilation-community-care-nursing... |