Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

Background: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers’ Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011–2014). Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer’s own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel. Conclusions: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home

A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice

More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative care to infants and their families is the importance of good education and training to develop high-quality staff and services. This article presents a mixed-methods, sequential, explanatory design evaluation of 1 day palliative care education workshops delivered using a network-wide approach to multidisciplinary professionals. Workshops were delivered by healthcare professionals and bereaved parents and evaluated using questionnaires, adapted for neonatal staff from standardized measures, and follow-up interviews. The workshop content and shared learning approach resulted in significant improvements in participant's knowledge, attitude, self-beliefs and confidence in neonatal palliative care, enhanced awareness of services, and improved links between professionals. Participants cascaded their learning to their teams and provided examples of changes in their clinical practice following the workshop. Parent stories were identified as a very powerful component of the training, with lasting impact on participants. Formal, integrated palliative care education programs for perinatal and neonatal staff and longitudinal research into the impact on practice and the experience received by families are needed

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

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 co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family

Supporting researchers conducting qualitative research into sensitive, challenging, and difficult topics: Experiences and practical applications.

Qualitative researchers often engage in work addressing challenging, difficult, or sensitive topics and are consequently exposed to the participants’ narratives which may be emotionally charged, distressing, or compromising. These narratives occasionally rest heavy on a researcher’s conscience or may linger in the mind. Much literature has assessed how best to keep participants safe, but less attention has been given to how we keep researchers safe. We therefore document the following: (1) Our experiences of the issues presented by undertaking qualitative research involving challenging, difficult, or sensitive topics; and (2) Practical principles devised to overcome these issues, ensuring safety and wellbeing amongst researchers engaging in these types of qualitative research. We provide guidance for qualitative researchers of all levels of experience and expertise on how best to protect and support themselves, their colleagues, and other collaborating research staff, when undertaking qualitative research which might otherwise feel uncomfortable or overwhelming to tackle

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

Aim 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 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. Design Descriptive cross‐sectional survey. Methods Children 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: a 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

Sensitive, Challenging, and Difficult Topics: Experiences and Practical Considerations for Qualitative Researchers

Qualitative researchers often engage in work addressing challenging, difficult, or sensitive topics and are consequently exposed to the participants’ narratives which may be emotionally charged, distressing, or compromising. These narratives occasionally rest heavy on a researcher’s conscience or may linger in the mind. Much literature has assessed how best to keep participants safe, but less attention has been given to how we keep researchers safe. We therefore document the following: (1) Our experiences of the issues presented by undertaking qualitative research involving challenging, difficult, or sensitive topics; and (2) Practical principles devised to overcome these issues, ensuring safety and wellbeing amongst researchers engaging in these types of qualitative research. We provide guidance for qualitative researchers of all levels of experience and expertise on how best to protect and support themselves, their colleagues, and other collaborating research staff, when undertaking qualitative research which might otherwise feel uncomfortable or overwhelming to tackle

Sensitive, challenging, and difficult topics: Experiences and practical considerations for qualitative researchers

Qualitative researchers often engage in work addressing challenging, difficult, or sensitive topics and are consequently exposed to the participants’ narratives which may be emotionally charged, distressing, or compromising. These narratives occasionally rest heavy on a researcher’s conscience or may linger in the mind. Much literature has assessed how best to keep participants safe, but less attention has been given to how we keep researchers safe. We therefore document the following: (1) Our experiences of the issues presented by undertaking qualitative research involving challenging, difficult, or sensitive topics; and (2) Practical principles devised to overcome these issues, ensuring safety and wellbeing amongst researchers engaging in these types of qualitative research. We provide guidance for qualitative researchers of all levels of experience and expertise on how best to protect and support themselves, their colleagues, and other collaborating research staff, when undertaking qualitative research which might otherwise feel uncomfortable or overwhelming to tackle

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

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. MethodsA 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. ResultsTwenty-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 co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family

CP1- Investigating the use of digital legacies with people affected by MND

Background: Dignity therapy is a proven palliative care intervention which encourages people, at the end of their life, to reflect and record their past experiences and memories by creating a legacy document. An alternative format, the ?digital legacy', is a purposefully recorded selection of video messages regarding a person's life, memories and achievements using a webcam or iPad/iPhone. The topic of creating a digital legacy, specifically for a child, using ?RecordMeNow' was presented at the APF (Allied Professionals Forum) meeting in 2014. To date, there is little published research about how children/young people are affected when a family member has the disease and subsequently dies. As such, there is a dearth of literature on how to best support these young people. Objective: This research is investigating the use of a ?digital legacy' with people who are affected by MND. This means people living with MND (plwMND) create a series of video messages of their memories and accomplishments, specifically for a child in their family, which are later copied to a DVD or digital source. The process allows a period of reflection for the person with MND to document their life, whilst also creating a tangible resource for a young carer and/or bereaved young person. Methods: The study is underpinned by Interpretative Phenomenological Analysis (IPA) meaning a small homogeneous sample is required. Recruitment is currently underway and being achieved through MND care centres, traditional newsletter publications and utilisation of numerous online social media platforms (blogs, forums, Twitter and Facebook). Individuals who are interested in participating then establish contact with the research team. Data collection involves a single, unstructured interview with each participant. This offers a time for participants to discuss their experiences of creating/using a digital legacy. Written transcripts are then analysed in accordance with the IPA methodology. Discussion: Although recruitment is a challenge, the initial findings suggest that a digital legacy creates benefits for the plwMND. The process of creating a digital legacy requires little input from health care professionals. It is paramount for plwMND to be made aware of creating a digital legacy at the appropriate point in their disease trajectory. Acceptance of the disease, vocal ability and physical dexterity are crucial factors to consider when discussing the intervention with plwMND

Investigating the use of digital legacies with people affected by Motor Neurone Disease

Motor Neurone Disease (MND) is a progressive, terminal, neurological disease meaning palliative care is crucial. To date, little research has investigated how children/young people are affected when a family member has the disease and subsequently dies. As such, there is a dearth of literature on how to best support these young people. This study, using Interpretative Phenomenological Analysis (IPA), will investigate the use of digital legacies. People diagnosed with MND will record a series of video-messages about their life, accomplishments and memories specifically for a child/young person in their family. Access to the digital legacy will be given to the child/young person to use as a means of reconnecting/providing emotional support. Multiple methods have been adopted to raise awareness of the study and aid recruitment. Social media, blogs, forums, traditional newsletters and a viral campaign have been utilised to raise awareness of the study, yet, the recruitment process has still proven to be challenging. Firstly, people living with MND will be informed about the possibility of creating a digital legacy for a child/young person in their family. Once a digital legacy is recorded, or used, the person can be interviewed for the study about their experience of creating, or using, a digital legacy. Identifying and recruiting eligible participants is proving to be a significant practical issue and any suggestions or guidance are welcomed