Understanding and Identifying Priorities for Improving the Healthcare Experiences of People With Incurable Head and Neck Cancer: a Qualitative Investigation and Co-design Approach
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 69
- 试验地点
- 1
- 主要终点
- Completion of co-design workshops in Work Package 2
研究概览
简要总结
This research aims to improve experiences of patients with incurable head and neck cancer (IHNC) by finding out the most pressing issues for them and developing solutions to improve these.
Patients with IHNC have many complex needs and the level of support they require is often greater than other illnesses. IHNC symptoms cause major changes to basic functions, such as: being unable to talk; severe swallowing problems with a high choking risk; breathing difficulties requiring a hole in the neck (tracheostomy). The manner of death can be highly traumatic and frightening e.g. catastrophic bleeding from the neck. Despite this poor outlook, little is known about patients' needs in the last year of life. However, IHNC patients have more emergency hospital visits compared with other cancer groups. Patients from poorer areas are more likely to die in hospital. Furthermore, head and neck cancer (HNC) units are centralised, with access to specialist services dependent on where the patient lives.
The researcher wishes to understand 'stress points' in the patients' journey, where things do not go as planned, identify priorities for change and develop patient-led solutions.
There are two main parts to this work, occurring over 21-months across Yorkshire, Northwest and Northeast England.
- A series of up to three interviews with approximately 25 IHNC patients and their families, along with group discussions with healthcare workers involved in IHNC care. These will explore how patients' needs and use of healthcare change over time.
- Using interview and group discussion findings, the study team will hold a series of workshops with patients, families, clinical service leaders, and healthcare workers. The study team will identify priorities and develop ways to improve care experiences.
The research is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme.
详细描述
STUDY DESIGN - A prospective longitudinal qualitative study across three regions of North England, accompanied by co-design workshops which will utilise study findings to identify priority areas for improving care for patients with incurable Head and Neck Cancer (HNC).
SETTING - Three HNC centres based in Northwest, Northeast and Yorkshire representing areas of high incidence of HNC, diverse socioeconomic populations and heterogenous geographical locations (main sites - Newcastle Upon Tyne Hospitals National Health Service (NHS) Foundation Trust, Liverpool University Hospitals NHS Foundation Trust and Sheffield Teaching Hospitals NHS Foundation Trust).
METHODS
Work package 1: Longitudinal qualitative study (months 1-18) This will comprise of longitudinal interviews with patients and family carers (WP1a) and focus groups with healthcare professionals (WP1b).
WP1a: Longitudinal interviews Rationale for study design: Previous qualitative HNC studies all entailed participants being asked once about their experiences. Longitudinal interviews shed light on how issues evolve over time and are particularly suitable when there is an unpredictable disease trajectory; changing needs; and interactions with healthcare services are varied and complex. They offer advantages over a single interview or a comparison of 'snapshot' data at different stages in an illness. These include: capturing change over time; facilitating more private, evolving accounts; and exploring how external factors, such as the influence of healthcare services over the course of the patient journey, affect needs and experiences. They can highlight shortcomings and allow suggestions for improvements. Additionally, longitudinal interviews facilitate a continuing relationship between the researcher and participant bringing personal satisfaction to both parties as well as helping make any 'after-death' interviews with family carers more acceptable. The feasibility and acceptability of longitudinal interviews with people with incurable disease are demonstrated by Murray et al (2009). They report on longitudinal interviews conducted with more than 150 palliative care patients (including those with lung cancer, brain tumours, severe chronic obstructive airways disease and advance cardiac failure).
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •INTERVIEWS WITH PATIENTS AND CARERS
- •Have a clinical diagnosis of incurable HNC where the intent of any treatment is palliative, including those with:
- •incurable primary HNC
- •recurrent or persistent HNC not amenable for further curative treatment
- •metastatic disease
- •other co-morbidities (including a concurrent primary cancer at another site) meaning curative treatment is either not advised by the MDT or reflected by the patients' choice
- •Are >= 18 years old
- •Able to give informed consent
- •Reside within the networks covered by the three chosen HNC centres
- •Or are/was a family carer (>= 18 years old) to someone participating in the study.
- •FOCUS GROUPS WITH HEALTHCARE PROFESSIONALS
- •Any HCP who has been involved in the case of incurable HNC patients over the last 12 months
- •Works clinically within the regions of the Northwest, Northeast or Yorkshire (in keeping with the Clinical Research Network areas of the North East and North Cumbria, Northwest Coast and Yorkshire and Humber https://local.nihr.ac.uk/lcrn/).
- •Are >= 18 years old
- •Able to give informed consent
- •Able to participate in an online focus group, when required.
排除标准
- •INTERVIEWS WITH PATIENTS AND CARERS
- •Unable to provide fully informed written consent FOCUS GROUPS WITH HEALTHCARE PROFESSIONALS
- •Unable to provide informed consent
- •Unable to participate in an online focus group, when required.
结局指标
主要结局
Completion of co-design workshops in Work Package 2
时间窗: Within 20 months of consent
Completion of co-design workshops in Work Package 2
Completion of interviews in Work Package 1a
时间窗: Within 18 months of consent
Completion of interviews in Work Package 1a
Completion of on-line focus groups in Work Package 1b
时间窗: Within 12 months of being involved in the care of HNC patients
Completion of interviews in Work Package 1a
次要结局
未报告次要终点