A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home.

There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services. The aim of this study was to explore the experiences of stroke family caregivers following the implementation of the Care Act, 2014. A total of 16 semi-structured, digitally recorded face-to-face qualitative interviews were conducted with a purposive sample of stroke family caregivers in north-west England. Thematic analysis was undertaken. Two themes were identified: the effects of caregiving and the unmet needs of the family caregivers. Despite changes to legislation, family caregivers of stroke survivors continue to experience challenges, such as financial problems, information needs, and a lack of respite and emotional support when providing care. Existing approaches to identifying and supporting caregiver needs are insufficient. Proactive approaches are required to ensure the needs of family caregivers are identified and addressed on a regular basis.

Grey area nursing: high-dependency nurses' experiences of caring for patients approaching the transition from curative to palliative care.

Background: Nurses in high-dependency units frequently facilitate the withdrawal of life-sustaining treatments and provide end-of-life care. Providing this care has been shown to cause distress, burnout and cumulative grief. There remains a lack of understanding of high dependency nurses' experiences of caring for patients approaching withdrawal of life-sustaining treatments. Aim: To explore experiences of high dependency nurses caring for patients approaching withdrawal of life-sustaining treatment and highlight any support or needs they may have. Methods: Interviews were conducted and analysed using qualitative thematic analysis. Findings: Nurses experienced conflict in decision making, which was reported to prolong patient distress and cause nurses moral anguish. Nurses need time to talk and further education to support them to provide withdrawal of life-sustaining treatment. Conclusion: High-dependency nurses need time to talk following caring for this patient group and more extensive education to support them to provide quality end-of-life care.

A Qualitative Study Exploring Patient, Family Carer and Healthcare Professionals' Direct Experiences and Barriers to Providing and Integrating Palliative Care for Advanced Head and Neck Cancer.

OBJECTIVES: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care. METHODS: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi's framework, was used to analyze the data. RESULTS: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: "lack of consensus about timing of Specialist Palliative Care engagement" and "high stake decisions with uncertainty about treatment outcome." The main barrier identified by patients and family carers was "lack of preparedness when transitioning from curable to incurable disease." There were 2 overlapping themes from both groups: "uncertainty about meeting psychological needs" and "misconceptions of palliative care." CONCLUSIONS: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.

Methadone-Assisted Opiate Withdrawal and Subsequent Heroin Abstinence: The Importance of Psychological Preparedness.

BACKGROUND AND OBJECTIVES: Treatment guidelines emphasize patients' readiness for transitioning from opiate substitution treatment (OST) to opiate withdrawal and abstinence. Psychological preparedness indicators for this transition were examined. METHODS: Patients (all male) were recruited from three treatment settings: prison, an inpatient detoxification unit, and an outpatient clinic. Time 1 (T1) was admission to methadone-assisted withdrawal in all settings. Time 2 (T2) was a 6-month follow-up. With n = 24 at T1 for each group (N = 72), a battery of instruments relevant to psychological preparedness was administered. RESULTS: At T1, inpatients had higher self-efficacy beliefs for successful treatment completion than prison patients. For patients contactable at T2, T1 self-efficacy positively predicted T2 opiate abstinence. No other variable improved prediction. T1 SOCRATES (Stages of Change Readiness and Treatment Eagerness Scale) ambivalence scores, age, and lifetime heroin use duration predicted maintenance of contact or not with treatment services and contactability by the researcher. Measures of mood did not differ between groups at T1 or predict T2 outcomes. DISCUSSION AND CONCLUSIONS: Self-efficacy beliefs are a potentially useful indicator of readiness for transitioning from OST to a medically assisted opiate withdrawal and subsequent abstinence. Ambivalence regarding change, age, and lifetime heroin use duration are potentially useful predictors of patients maintaining contact with services, and of being retained in research. SCIENTIFIC SIGNIFICANCE: These findings advance existing literature and knowledge by highlighting the importance of self-efficacy in psychological preparedness for opiate abstinence, and the predictive utility to clinicians of this and other variables measurable at admission, in the clinical management of opiate users. (© 2020 The Authors. The American Journal on Addictions published by Wiley Periodicals LLC on behalf of The American Academy of Addiction Psychiatry). (Am J Addict 2021;30:11-20).

Continuing Bonds With Children and Bereaved Young People: A Narrative Review.

BACKGROUND: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members. AIM: To investigate how bereaved young people continue bonds with deceased family members. DESIGN: A systematically conducted narrative review was conducted using six electronic databases: CINAHL, Medline, EMBASE, PsycINFO, PubMed, and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the Joanna Briggs Institute Critical Appraisal Tools. RESULTS: Twenty articles were included in the review. Three overarching themes were generated: unintended connections, intended connections, and internalized connections. CONCLUSION: Bereaved young people establish a sense of connection with deceased family members through various means (e.g., unprovoked or spontaneous reminders, physical mementos, internalized memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection.

Virtual learning environment ('Ivy Street') for palliative medicine education: student and facilitator evaluation.

AIM: The study aimed to evaluate student and facilitator perceptions regarding the novel use of a virtual learning environment (VLE) in the development and implementation of 'Ivy Street'. SAMPLE/METHODS: Healthcare professionals enrolled on the first palliative and end-of-life care masters level module and course facilitators were invited to participate in the study. Two online surveys were developed comprising five open-ended questions to gain both student (n=16) and facilitator (n=4) perceptions of Ivy Street. Data were analysed thematically. FINDINGS: The key theme to emerge was the 'Positive Perceptions of Ivy Street'. A second sub theme 'Critical Feedback of Ivy Street' focused on some initial technical issues. Respondents perceived the use of Ivy Street to be enjoyable, enabling and promoting peer discussion, while also having a high impact on student engagement. Respondents commented how Ivy Street removed concerns regarding confidentiality when discussing patient cases through utilisation of standardised Ivy Street characters. CONCLUSION: The novel use of a VLE through developing characters, a story and vignettes is considered to be an effective and engaging method of learning for healthcare professionals enrolled on a palliative and end-of-life care module.

The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review.

INTRODUCTION: The number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models. METHODS AND ANALYSIS: A mixed-methods systematic review conducted in two stages: (1) knowledge map and (2) evidence review. We will comprehensively search multiple electronic databases; use the Citations, Lead authors, Unpublished materials, Google Scholar, Theories, Early examples, and Related projects (CLUSTER) approach, search relevant websites and circulate a 'call for evidence'. Using the setting, perspective, intervention/phenomenon of interest, comparison and evaluation framework, two reviewers will independently select evidence for inclusion into a knowledge map and subsequent evidence review, extract data relating to study and population characteristics, methods and outcomes; and assess the quality of evidence. A third reviewer will arbitrate where necessary.Evidence will be synthesised using the following approaches: quantitative (narratively/conducting meta-analyses where appropriate); qualitative (framework approach); policy and guidelines (documentary analysis informed approach). An overall, integrated synthesis will be created using a modified framework approach. We will use Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-Confidence in the Evidence from Reviews of Qualitative Research to assess the strength and confidence of the synthesised evidence. Throughout, we will develop a conceptual framework to articulate how service models work in relation to context and setting. ETHICS AND DISSEMINATION: Ethical approval is not required as this is a systematic review. We will present our work in academic journals, at appropriate conferences; we will disseminate findings across networks using a range of media. Steering and advisory groups were established to ensure findings are shared widely and in accessible formats. PROSPERO REGISTRATION NUMBER: CRD42018088780.

The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study.

BACKGROUND: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person's life, memories and achievements. AIM: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. DESIGN: A qualitative study underpinned by interpretative phenomenological analysis. SETTING/PARTICIPANTS: People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee. RESULTS: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos. CONCLUSION: This study expands the existing continuing bonds model of grief to include an 'autobiographical chapter', creating 'The Model of Reciprocal Bonds Formation'.

Teaching nurses to teach: A qualitative study of nurses' perceptions of the impact of education and skills training to prepare them to teach end-of-life care.

AIMS AND OBJECTIVES: To explore nurses' perceptions of the impact of a programme designed to train them to teach end-of-life care. BACKGROUND: Central to national and international policies are the need for generalist healthcare staff to have education in end-of-life care. Much end-of-life care education is provided by specialist nurses who often have no specific education development to prepare them to teach. To address this gap, an Education Development Programme (EDP) was developed and delivered to specialist nurses. We report on the evaluation of the programme. DESIGN: A qualitative programme evaluation methodology was adopted. METHODS: Data were collected through focus groups, at three hospice education centres in North West England, with a total of 20 participants. Nurses who had completed the EDP were purposively sampled. Data were digitally audio-recorded and subjected to thematic analysis to organise, reduce and refine the data. Ethical approval was obtained. COREQ guidelines have been adhered to in the reporting of this study. RESULTS: Two main themes were identified; learning to teach and building skills to change teaching practice. Participants felt more confident and better prepared to teach. CONCLUSIONS: It cannot be assumed that specialist staff, with teaching in their role, have the skills to facilitate learning. This programme offers a potential method of improving facilitation skills for nurses who have an education element to their role. RELEVANCE TO CLINICAL PRACTICE: Quality end-of-life care is only possible with a skilled workforce, confident and able to apply the principles of compassionate end-of-life care to everyday practice. Appropriately trained, specialist staff are better able to teach others how to deliver good quality end-of-life care. Specialist staff with teaching responsibilities should be provided with, or engage in, continuous professional development to develop their skills and improve their efficacy when teaching.

"That's a child, it's not a diagnosis." What can paediatricians learn from medical humanities?: a mixed methods study.

This article was migrated. The article was marked as recommended. Objective:The aim of this study was to evaluate UK paediatric specialist trainees' perceptions of a medical humanities teaching session on their communication and empathy skills. Methods: A medical humanities session was incorporated into a teaching programme for 19 doctors in their first three years of paediatric training. Using set questions, participants discussed themes of communication, empathy, ethical issues and language. A qualitative methodology was adopted for the evaluation. All doctors who undertook the session were invited to join in a digitally recorded focus group and nine participated. Thematic analysis of the transcript was undertaken by two researchers to identify and code key themes. Six months post-course all participants were invited to complete an online survey looking at the longer-term impact of the session and five responded. Results:Coding of the transcript identified two key themes that participants felt the session added to their usual teaching: i) communication and ii) reflection. Conclusion:Literature-based teaching for junior paediatric doctors was well received and valued by participants and adds to standard teaching. It provides a platform for consideration of the parental perspective and communication (in particular the use of language) as well as providing structured time for reflection on clinical experiences.

Meeting patients' spiritual needs during end-of-life care: A qualitative study of nurses' and healthcare professionals' perceptions of spiritual care training.

AIMS AND OBJECTIVES: To explore nurses' and healthcare professionals' perceptions of spiritual care and the impact of spiritual care training on their clinical roles. BACKGROUND: Many nurses and healthcare professionals feel unprepared and lack confidence, competence and skills, to recognise, assess and address patients' spiritual issues. Patients with unmet spiritual needs are at increased risk of poorer psychological outcomes, diminished quality of life and reduced sense of spiritual peace. There are implications for patient care if nurses and healthcare professionals cannot attend to patients' spiritual needs. DESIGN: A qualitative methodology was adopted. METHODS: Recruitment was purposive. A total of 21 generalist and specialist nursing and healthcare professionals from North West and South West England, who undertook spiritual care training between 2015-2017, were recruited. Participants were required to be a minimum of 3 months posttraining. Digitally audio-recorded semistructured interviews lasting 11-40 min were undertaken in 2016-2017. Data were subjected to thematic analysis. Ethical committee approval was obtained. COREQ reporting guidelines were utilised. RESULTS: Two main themes were identified, recognising spirituality, with subthemes of what spirituality means and what matters, and supporting spiritual needs, with subthemes of recognition of spiritual distress, communication skills, not having the answers and going beyond the physical. CONCLUSIONS: Supporting patients as they approach the end of life needs a skilled workforce; acknowledging the importance of spiritual care and having skills to address it are central to delivery of best holistic care. RELEVANCE TO CLINICAL PRACTICE: Spiritual care is as important as physical care and supporting patients spiritually as they approach the end of life is vital. Appropriately trained, nurses and healthcare professionals are better able to assess, explore and meet patients' spiritual needs.

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.

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

AIM: 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 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: 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.

Health care professionals' perceptions of a community based 'virtual ward' medicines management service: A qualitative study.

This article describes a qualitative research study using focus groups to explore the views and experiences of a medicines management team (MMT) on the service they deliver within a 'Virtual Ward' (VW); and those of the wider multidisciplinary team of healthcare professionals on the service provided by the MMT. Several themes emerged from the focus groups, including impact on patients and carers, team working and issues and challenges. A dedicated MMT was seen as a positive contribution to the VW, which potentially increased the quality of patient care, and appeared to be a positive experience for both the MM and wider multidisciplinary team.

Consulting with children, parents and a teacher to shape a qualitative study.

BACKGROUND: Patient and public involvement is an emerging element of contemporary research and reflects an acknowledgement of the expertise of people who have personal knowledge or experience of a research topic. AIM: To discuss the value of consultation in contributing to the ethical and methodological choices underpinning a qualitative study. DISCUSSION: The study discussed explored the perceptions and experiences of children aged four to 12 with long-term conditions of being held still by adults during clinical procedures in acute care. Consultation took place in three stages and involved engagement with a children's advisory group and members of the public, including parents and a teacher. CONCLUSION: Engagement shaped the focus, influenced the design and underpinned the ethical basis of the study. In addition, consultation identified that the focus of the research was misunderstood by potential participants and their parents. IMPLICATIONS FOR PRACTICE: Engaging in robust consultation is a valuable process which can inform research design in unexpected ways. Engagement with children ensures that their perspectives are identified and included and shape the study.

Creating authentic video scenarios for use in prehospital research.

Video scenarios have been used to explore clinical reasoning during interviews in Think Aloud studies. This study used nominal group technique with experts to create video scenarios to explore the ways paramedics think and reason when caring for children who are sick or injured. At present there is little research regarding paramedics' clinical reasoning with respect to performing non-urgent procedures on children. A core expert panel identified the central structure of a prehospital clinical interaction and the range of contextual factors that may influence a paramedic's clinical reasoning [the way in which information is gathered, interpreted and analysed by clinicians]. The structure and contextual factors were then incorporated into two filmed scenarios. A second panel of clinical practice experts, then critiqued the body language, spoken word and age appropriate behaviours of those acting in the video scenarios and compared them against their own experience of clinical practice to confirm authenticity. This paper reports and reflects on the use of nominal group technique to create authentic video scenarios for use in prehospital research.

Improving end of life care in care homes; an evaluation of the six steps to success programme.

BACKGROUND: There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme. METHOD: In order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012-2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC - Achieving Quality in Care Homes. RESULTS: The programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes. Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as 'Champions' and staff sickness/high staff turnover presented challenges to embedding programme values. Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes. CONCLUSIONS: The findings suggested an overall positive impact from the programme. This flexibly designed programme continues to be dynamic, iteratively amended and improved which may affect the direct transferability of the results to future cohorts.

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.

AIM: To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. BACKGROUND: 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. DESIGN: A prospective descriptive qualitative study. METHODS: 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. RESULTS: Several subthemes: 'Talking about'; 'Knowing and Doing'; 'Caring for the Caregivers'; and 'Promoting Choice' contributed to the overall theme of Embracing Holism. A positive impact on emotional, psychological, social and physical well-being was apparent. CONCLUSIONS: This study has provided additional insights as to the value of Hospice at Home care where Hospice Nurses are helping to bring Hospice care into the home. This is helping to support older people who are dying and their caregivers, to live as well as possible and facilitate their wish to be cared for and die in their own home.

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

BACKGROUND: 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. OBJECTIVE: To explore alternative short break and emergency respite care options to children's hospice care. METHODS: 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. RESULTS: 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. CONCLUSION: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.