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Tracy Mitchell

Edge Hill University, Health and social care, Faculty Member

Edge Hill University, Faculty of Health & Social Care, Graduate Student

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Having a background in child health, education (mainstream and special nursery, infant, primary and secondary schools) and social work, working with vulnerable children, young people and adults who have learning disabilities, autistic spectrum disorders, complex health needs, acquired brain injury and mental health conditions, and families under stress has increased my awareness of how ecological factors influence lifelong health and development, education and social well-being outcomes. I am a registered Social Worker and am committed to research that improves practice and outcomes of care to support children, young people and adults to achieve their potential and the best quality of life. My research interests are complex health needs, palliative care, end-of-life care, carers' needs, mental health and integrated practice. Following on from the projects I worked on as a Research Assistant, in the Evidence-Based Practice Research Centre (EPRC), in the Faculty of Health and Social Care at Edge Hill University, Ormskirk (2013-2016):
• 'An Emergency Care Impact Assessment for Claire House Children's Hospice (2013-14)';
• ‘An Evaluation of the Queenscourt at Home Service' (2014-15);
• 'An Evaluation of End of Life Care for Children and Young People’ (2014-16);
• 'An Evaluation of the Advanced Resuscitation of the Newborn Infant (ARNI) course';
• 'An Evaluation of the Educator Development Programme';
• ‘An investigation of Specialty Trainee's engagement with e-learning in Health Education North West’
• 'An Evaluation of the Opening the Spiritual Gate Programme',
utilising a mixture of qualitative and quantitative methodologies, I commence a PhD Studentship and Graduate Teaching Assistant role in September 2016 at Edge Hill University, researching how families of children with complex health needs mediate the intrusion of medical technology upon life, with Prof Bernie Carter as Director of Studies, and Dr Lucy Bray and Dr Annette Dickinson as Supervisors. See more at: http://orcid.org/0000-0003-0014-8016.
Supervisors: Bernie Carter, Lucy Bray , and Annette Dickinson

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Papers by Tracy Mitchell

Emergency Care Impact Assessment (ECIA) Project. Claire House Children’s Hospice

The impact of medical technology upon the home and feelings of at-homeness for children and young people with complex health care needs and their family members

Blake, and Doctor Annette Dickinson for their reliability, encouragement and guidance throughout ... more Blake, and Doctor Annette Dickinson for their reliability, encouragement and guidance throughout my PhD journey. Their incredible hard work and feedback have been invaluable, and I could not have completed this journey without them. Thanks to Dr Catherine Wilkinson for examining my registration viva voce and Dr Andrew Moore for examining my progression viva voce. Their interest in my study and feedback for the next phase of my PhD was beneficial to the development of this study. Thanks also to Professor Helen Langton and Professor Sally Spencer for agreeing to examine my final viva voce. I owe my gratitude to Annette Ramsden for her support with my initial literature search and retrieval, and to John Haycock for his support with the Inspiration mind mapping programme. I would like to thank my son, Steven, for his outstanding IT training, support and patience. Special thanks to Andy Kirkcaldy for his unconditional support and understanding during our shared PhD journeys and in my previous Research Assistant role. Also, to my Edge Hill University PhD studentship peers and friends, Julie, Keegan, Holly, Lynn, Gergana and Danielle. My husband, Andrew, and three children, Kim, Kirstie, and Steven, wider family, and friends must be recognised for all their years of love and because they have undoubtedly felt somewhat neglected over the last (almost) four years (despite my best efforts for them not to) but have not forgotten or given up on me. Lastly, I would like to express my heartfelt gratitude to the children and young people and their sisters, mothers, fathers and grandmother who, willingly and without reward, gave up their precious time to take part in this study, which would not have happened without them. It was my privilege to gain an insight into your lives and this gave me the tenacity to complete this PhD study and the strength to live in the moment and make the most of every day. Thank you so much. v Dedication I dedicate this thesis to all children and young people with complex health care needs and their family members. Parents, I admire your strength and determination to ensure that your child receives the best care even though you are often physically and emotionally exhausted. I hope that the dissemination of findings from this study can positively inform the future planning, development and delivery of appropriate and effective technology and services. I hope that such technology and services are what you want, need and value, and they enhance your experiences of living at home with medical technology, and the health, wellbeing, quantity and quality of life of all your family members. vi Glossary of Terms Augmentative and Alternative Communication Device (with Brain-Computer Interface): Although not commonly considered as 'medical technology', augmentative and alternative communication (AAC) and other equipment such as brain-computer interface (BCI) enable children (or adults) to command devices, such as wheelchairs, using only eye gaze or brain signals. Child: Although the legal definition of a child in the United Kingdom is a child who has not yet reached their 18 th birthday, within this thesis, the term child will be used to describe a child, young person or adult who requires medical technology and is aged up to 25 years old. This is because children who have a disability can be provided with services to safeguard and promote their welfare under the Children Act 1989 until they are aged 25 years. Complex Health Care Needs: The term complex health care needs generally indicates that a child has an irreversible life-limiting or life-threatening condition and is expected to die prematurely. They may also have a severe disability and special educational needs. Family: The concept of family can be broad. Family, in the context of this study is the parent(s) and child/ren (related by blood ties or adopted) living together as a unit. Home: Home, in the context of this study, is the physical domestic building where a child lives with their family and includes places such as the garden or garage. Life-limiting conditions: The term life-limiting condition is used to describe diseases that cannot be cured and from which a child will die prematurely. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on their parents and carers. Life-threatening conditions: Life-threatening conditions are those for which curative treatment may be feasible but can fail. Children in long-term remission or following successful curative treatment are not included in this definition. Palliative Care: An active and total approach to care from the point of diagnosis or recognition through to death and beyond. Palliative care focuses on enhancement of quality of life for the child/young person and support for the family. It includes symptom management, the provision of short breaks and care through death and bereavement. vii Technology-dependent: Although there is also no agreed definition for the term technologydependence in the United Kingdom, within this thesis, technology-dependence refers to medical technology and equipment which is used to monitor and treat a child's medical condition(s), to maintain their health status, prevent further disability or to sustain their life.

<i>‘I feel like my house was taken away from me’</i> : Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

Health & Social Care in The Community, Jun 17, 2022

Children who are dependent upon technology are resource-intensive (Breneol et al., 2019), a high-... more

‘It doesn't feel like our house anymore’: The impact of medical technology upon life at home for families with a medically complex, technology-dependent child

Health & Place, Mar 1, 2022

The study aimed to identify how medical technology impacts upon the home and life at home. Induct... more The study aimed to identify how medical technology impacts upon the home and life at home. Inductive auto-driven photo-elicitation or semi-structured interviews were conducted with technology-dependent children/young people (n = 2) and their family members (n = 15) from 10 families. Thematic analysis generated three themes: Altered physicality and look of the home; Altered sounds in the home; and 'It's worth it! Technology enables us to stay as a family'. Fundamentally, the detrimental impacts of living with medical technology were perceived as worth it as these enabled their child to be at home. Home was not home, and families were incomplete without their child at home.

Mixed-methods feasibility study to inform a randomised controlled trial of proton pump inhibitors to reduce strictures following neonatal surgery for oesophageal atresia

BMJ Open

ObjectivesThis mixed-methods feasibility study aimed to explore parents’ and medical practitioner... more ObjectivesThis mixed-methods feasibility study aimed to explore parents’ and medical practitioners’ views on the acceptability and design of a clinical trial to determine whether routine prophylactic proton pump inhibitors (PPI) reduce the incidence of anastomotic stricture in infants with oesophageal atresia (OA).DesignSemi-structured interviews with UK parents of an infant with OA and an online survey, telephone interviews and focus groups with clinicians. Data were analysed using reflexive thematic analysis and descriptive statistics.Participants and settingWe interviewed 18 parents of infants with OA. Fifty-one clinicians (49 surgeons, 2 neonatologists) from 20/25 (80%) units involved in OA repair completed an online survey and 10 took part in 1 of 2 focus groups. Interviews were conducted with two clinicians whose survey responses indicated they had concerns about the trial.Outcome MeasuresParents and clinicians ranked the same top four outcomes (‘Severity of anastomotic strict...

A bridge from the Hospice: the value of holistic care from a Hospice at Home service, a qualitative study of patients’ and carers’ experiences

Background: Good communication and compassion are essential when caring for patients with palliat... more Background: Good communication and compassion are essential when caring for patients with palliative and end of life (EOL) needs. Multidisciplinary SCRs were introduced in the US to foster these qualities and have since been adopted in UK hospitals and hospices 1,2. It is unknown whether SCRs enhance undergraduate medical education 3. Aim: To seek the views of medical students with a view to incorporating SCRs into the curriculum. Methods: Two SCRs were piloted at University College London Medical School: students in Years 5 and 6 were invited to attend/complete an adapted national questionnaire. The sessions were based upon the current hospital format. A subgroup participated in a transcribed focus group.

Short break and emergency respite care: what options for young people with life-limiting conditions?

International Journal of Palliative Nursing, Feb 2, 2016

, M. (2015) 'Inviting parents to take part in paediatric palliative care research: A mixed-method... more , M. (2015) 'Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias' Palliative Medicine. 29 (3) pp. 231-240. Department for Education and Department of Health (2015) Special Educational Needs and Disability Code of Practice: 0-25 years. Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities. January. HM Government.

Supporting older people with cancer and life‐limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care

Journal of Advanced Nursing, Apr 26, 2016

Supporting older people with cancer and life-limiting conditions dying at home: a qualitative stu... more

No other choice” when children’s hospice care is unavailable: An Emergency Care Impact Assessment for Claire House Children’s Hospice

Background: Good communication and compassion are essential when caring for patients with palliat... more Background: Good communication and compassion are essential when caring for patients with palliative and end of life (EOL) needs. Multidisciplinary SCRs were introduced in the US to foster these qualities and have since been adopted in UK hospitals and hospices 1,2. It is unknown whether SCRs enhance undergraduate medical education 3. Aim: To seek the views of medical students with a view to incorporating SCRs into the curriculum. Methods: Two SCRs were piloted at University College London Medical School: students in Years 5 and 6 were invited to attend/complete an adapted national questionnaire. The sessions were based upon the current hospital format. A subgroup participated in a transcribed focus group.

Emergency Care Impact Assessment (ECIA) Project: Exploring the impact of children’s hospice services upon hospice users and stakeholders

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices

Journal of Advanced Nursing, Jun 14, 2018

The aim of this study was to seek views of UK children's and adult hospices on the availability a... more The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. Background: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex lifelong symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. Design: Descriptive cross-sectional survey. Methods: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015-February 2016. Findings: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. Conclusion: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

BMC Palliative Care, Jul 13, 2018

Background: Good end-of-life care planning is vital to ensure optimal care is provided for patien... more Background: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals' views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods: A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0-18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children's hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results: Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion: The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for coordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.

The impact of medical technology upon the home and feelings of at-homeness for children and young people with complex health care needs and their family members

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices

Journal of advanced nursing, Jan 6, 2018

The aim of this study was to seek views of UK children's and adult hospices on the availabili... more The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. Descriptive cross-sectional survey. xChildren and adult hospices completed an online survey exploring service provision and ...

Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care

Journal of advanced nursing, Jan 26, 2016

To explore patients' and family caregivers' experiences and perceptions of Hospice at Hom... more To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver. Supporting end-of-life care at home has resulted in the expansion of Hospice at Home services. A wide configuration of services exists with a lack of robust evidence as to what is valued by recipients, particularly those who are older people. A prospective descriptive qualitative study. Recruitment was purposive. Eligible participants were in receipt of Hospice at Home service on at least three occasions and were deemed to have a life expectancy measured in weeks rather than days. Digitally recorded semistructured interviews with 41 participants (16 patients and 25 family caregivers) were undertaken between October 2014 - July 2015. Data were analysed and organized thematically. Several subthemes: 'Talking about'; 'Knowing an...

Short break and emergency respite care: what options for young people with life-limiting conditions?

International journal of palliative nursing, 2016

Service providers face difficult decisions about how best to develop services for the increasing ... more Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. To explore alternative short break and emergency respite care options to children's hospice care. A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. Access to appropriate short break and emergency respite care is required to prevent lifelong negative c...

Emergency Care Impact Assessment (ECIA) Project: Exploring the impact of children’s hospice services upon hospice users and stakeholders

AIM To explore the impact of the planned and emergency care provided by a children’s hospice on c... more AIM To explore the impact of the planned and emergency care provided by a children’s hospice on children and young people with life-limiting conditions, their families and stakeholders to inform future service development. METHODOLOGY A two phase mixed-method qualitative and quantitative study with young people, families, health and social care professionals and hospice staff. Phase1 Semi-structured interviews and focus groups (n=53) Phase 2 Electronic survey (n=82) Total (n=135) ANALYSIS Thematic analysis and descriptive statistics. SELECTED RESULTS • Families have limited or no other choice of alternative planned short breaks or emergency respite care provision when children’s hospice care is unavailable. • Families nor stakeholders had clear answers for how best to balance planned short breaks and emergency respite care provision, to enable the hospice to reach out to as many families as possible. • Participants spoke of genuine concerns about the lack of appropriate respite prov...

Assessing the impact of the Advanced Resuscitation of the Newborn Infant course

The Advanced Resuscitation of the Newborn Infant (ARNI) course focuses on extending skills for sp... more The Advanced Resuscitation of the Newborn Infant (ARNI) course focuses on extending skills for specialist intervention at birth in more complicated neonatal clinical resuscitation situations. This mixed methods study, using pre- and post-course questionnaires followed by semi-structured interviews, investigates how attending the ARNI course affects the later clinical performance of participants.

P-236 Children and adult hospice provision for young adults with life-limiting conditions: a uk survey

Service development, models and collaborative working

Emergency Care Impact Assessment (ECIA) Project. Claire House Children’s Hospice