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1.
J Palliat Care ; 36(2): 121-129, 2021 Apr.
Article in English | MEDLINE | ID: mdl-32928058

ABSTRACT

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.


Subject(s)
Caregivers , Head and Neck Neoplasms , Palliative Care , Aged , Aged, 80 and over , Delivery of Health Care , Female , Humans , Male , Middle Aged , Qualitative Research
2.
Omega (Westport) ; 83(3): 371-389, 2021 Aug.
Article in English | MEDLINE | ID: mdl-31166136

ABSTRACT

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.


Subject(s)
Bereavement , Adolescent , Child , Grief , Humans
3.
BMJ Open ; 9(6): e030470, 2019 06 17.
Article in English | MEDLINE | ID: mdl-31213455

ABSTRACT

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.


Subject(s)
Research Design , Respite Care , Systematic Reviews as Topic , Adolescent , Adult , Humans , Time Factors , Young Adult
4.
Palliat Med ; 33(7): 812-822, 2019 07.
Article in English | MEDLINE | ID: mdl-31023181

ABSTRACT

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'.


Subject(s)
Adaptation, Psychological , Documentation , Neurodegenerative Diseases , Object Attachment , Adult , Aged , Bereavement , Female , Humans , Interviews as Topic , Male , Middle Aged , Palliative Care , Qualitative Research , Surveys and Questionnaires , United Kingdom , Young Adult
5.
J Clin Nurs ; 28(9-10): 1819-1828, 2019 May.
Article in English | MEDLINE | ID: mdl-30667584

ABSTRACT

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.


Subject(s)
Education, Nursing, Continuing/methods , Hospice Care , Nurse Specialists/education , Program Evaluation , Terminal Care , England , Focus Groups , Humans , Program Development , Qualitative Research
6.
MedEdPublish (2016) ; 8: 130, 2019.
Article in English | MEDLINE | ID: mdl-38089394

ABSTRACT

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.

7.
J Clin Nurs ; 28(1-2): 182-189, 2019 Jan.
Article in English | MEDLINE | ID: mdl-30091251

ABSTRACT

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.


Subject(s)
Quality of Life/psychology , Spiritual Therapies/nursing , Spirituality , Terminal Care/methods , Adult , Attitude of Health Personnel , England , Female , Health Personnel , Hospice Care/methods , Humans , Male , Middle Aged , Nursing Staff, Hospital/psychology , Qualitative Research , Terminal Care/psychology
8.
BMC Palliat Care ; 17(1): 93, 2018 Jul 13.
Article in English | MEDLINE | ID: mdl-30005657

ABSTRACT

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.


Subject(s)
Advance Care Planning/standards , Health Personnel/psychology , Pediatrics/standards , Adult , Advance Care Planning/trends , Attitude of Health Personnel , England , Female , Humans , Interviews as Topic/methods , Male , Middle Aged , Palliative Care/methods , Palliative Care/standards , Qualitative Research
9.
J Adv Nurs ; 2018 May 06.
Article in English | MEDLINE | ID: mdl-29732597

ABSTRACT

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.

10.
Res Social Adm Pharm ; 14(1): 69-75, 2018 01.
Article in English | MEDLINE | ID: mdl-28216092

ABSTRACT

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.


Subject(s)
Delivery of Health Care/organization & administration , Health Personnel/organization & administration , Medication Therapy Management/organization & administration , Patient Care Team/organization & administration , Attitude of Health Personnel , Delivery of Health Care/standards , Focus Groups , Health Personnel/psychology , Humans , Perception , Qualitative Research , Quality of Health Care
12.
J Adv Nurs ; 72(9): 2162-72, 2016 Sep.
Article in English | MEDLINE | ID: mdl-27113470

ABSTRACT

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.


Subject(s)
Caregivers , Home Care Services , Hospice Care , Neoplasms , Adult , Aged , Female , Hospices , Humans , Male , Middle Aged , Patient Preference , Prospective Studies
13.
Int J Palliat Nurs ; 22(2): 57-65, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26926345

ABSTRACT

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.


Subject(s)
Emergency Medical Services , Respite Care , Terminally Ill , Adolescent , Adult , Focus Groups , Humans , Interviews as Topic , Young Adult
14.
Palliat Support Care ; 14(5): 479-87, 2016 10.
Article in English | MEDLINE | ID: mdl-26510786

ABSTRACT

OBJECTIVE: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. METHOD: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. RESULTS: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. SIGNIFICANCE OF RESULTS: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.


Subject(s)
Bereavement , Family/psychology , Palliative Care/psychology , Research/standards , Therapeutic Human Experimentation , Adult , Aged , England , Female , Humans , Male , Middle Aged , Qualitative Research , Surveys and Questionnaires
15.
J Adv Nurs ; 72(1): 227-39, 2016 Jan.
Article in English | MEDLINE | ID: mdl-26332419

ABSTRACT

AIM: To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. BACKGROUND: Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. DESIGN: Multi-phase modified Delphi study and instrument development. METHOD: Qualitative and quantitative data collection took place between 2011-2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. RESULTS: The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of 'the current caring situation' and 'the carer's own health and well-being' were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. CONCLUSIONS: The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method.


Subject(s)
Caregivers/psychology , Clinical Alarms , Family/psychology , Needs Assessment , Social Support , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Delphi Technique , Female , Home Care Services , Humans , Male , Middle Aged
16.
BMC Palliat Care ; 14: 22, 2015 May 03.
Article in English | MEDLINE | ID: mdl-25935715

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Family/psychology , Needs Assessment , Terminal Care/organization & administration , Advance Care Planning/organization & administration , Caregivers/economics , Emergencies , England , Health Status , Humans , Mental Health , Professional-Family Relations , Respite Care/organization & administration , Socioeconomic Factors , Time Factors
17.
J Clin Nurs ; 24(1-2): 131-40, 2015 Jan.
Article in English | MEDLINE | ID: mdl-25236658

ABSTRACT

AIMS AND OBJECTIVES: To explore bereaved family carers' perceptions and experiences of a hospice at home service. BACKGROUND: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. DESIGN: A qualitative study. METHODS: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. RESULTS: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. CONCLUSIONS: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. RELEVANCE TO CLINICAL PRACTICE: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.


Subject(s)
Caregivers/psychology , Family/psychology , Home Care Services , Hospice Care , Adaptation, Psychological , Adult , Aged , Aged, 80 and over , Female , Health Services Needs and Demand , Humans , Male , Middle Aged , Qualitative Research , United Kingdom , Young Adult
18.
BMJ Support Palliat Care ; 4(2): 167-174, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24681559

ABSTRACT

BACKGROUND: As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. AIM: To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales. DESIGN: Postbereavement survey to next-of-kin (NOK). SETTING/PARTICIPANTS: 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later. RESULTS: 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity. CONCLUSIONS: 'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

19.
J Clin Nurs ; 22(19-20): 2778-86, 2013 Oct.
Article in English | MEDLINE | ID: mdl-23600967

ABSTRACT

AIMS AND OBJECTIVES: To explore health care professionals' perspective of hospice at home service that has different components, individually tailored to meet the needs of patients. BACKGROUND: Over 50% of adults diagnosed with a terminal illness and the majority of people who have cancer, prefer to be cared for and to die in their own home. Despite this, most deaths occur in hospital. Increasing the options available for patients, including their place of care and death is central to current UK policy initiatives. Hospice at home services aim to support patients to remain at home, yet there are wide variations in the design of services and delivery. A hospice at home service was developed to provide various components (accompanied transfer home, crisis intervention and hospice aides) that could be tailored to meet the individual needs of patients. DESIGN: An evaluation study. METHODS: Data were collected from 75 health care professionals. District nurses participated in one focus group (13) and 31 completed an electronic survey. Palliative care specialist nurses participated in a focus group (9). One hospital discharge co-ordinator and two general practitioners participated in semi-structured interviews and a further 19 general practitioners completed the electronic survey. RESULTS: Health care professionals reported the impact and value of each of the components of the service, as helping to support patients to remain at home, by individually tailoring care. They also positively reported that support for family carers appeared to enable them to continue coping, rapid access to the service was suggested to contribute to faster hospital discharges and the crisis intervention service was identified as helping patients remain in their own home, where they wanted to be. CONCLUSIONS: Health care professionals perceived that the additional individualised support provided by this service contributed to enabling patients to continue be cared for and to die at home in their place of choice. RELEVANCE TO CLINICAL PRACTICE: This service offers various components of a hospice at home service, enabling a tailor made package to meet individual and local area needs. Developing an individually tailored package of care appears to be able to meet specific needs.


Subject(s)
Attitude of Health Personnel , Health Personnel/psychology , Home Care Services/organization & administration , Hospices , Terminal Care , Humans
20.
Nurse Educ Today ; 33(12): 1550-6, 2013 Dec.
Article in English | MEDLINE | ID: mdl-23398914

ABSTRACT

BACKGROUND: Good communication skills in healthcare professionals are acknowledged as a core competency. The consequences of poor communication are well-recognised with far reaching costs including; reduced treatment compliance, higher psychological morbidity, incorrect or delayed diagnoses, and increased complaints. The Simple Skills Secrets is a visual, easily memorised, model of communication for healthcare staff to respond to the distress or unanswerable questions of patients, families and colleagues. OBJECTIVES: To explore the impact of the Simple Skills Secrets model of communication training on the general healthcare workforce. DESIGN AND METHODS: An evaluation methodology encompassing a quantitative pre- and post-course testing of confidence and willingness to have conversations with distressed patients, carers and colleagues and qualitative semi-structured telephone interviews with participants 6-8 weeks post course. PARTICIPANTS: During the evaluation, 153 staff undertook the training of which 149 completed the pre- and post-training questionnaire. A purposive sampling approach was adopted for the follow up qualitative interviews and 14 agreed to participate. RESULTS: There is a statistically significant improvement in both willingness and confidence for all categories; (overall confidence score, t(148)=-15.607, p=<0.05 overall willingness score, t(148)=-10.878, p=<0.05) with the greatest improvement in confidence in communicating with carers (pre-course mean 6.171 to post course mean 8.171). There is no statistical significant difference between the registered and support staff. Several themes were obtained from the qualitative data, including: a method of communicating differently, a structured approach, thinking differently and additional skills. The value of the model in clinical practice was reported. CONCLUSION: This model can be suggested as increasing the confidence of staff, in dealing with a myriad of situations which, if handled appropriately can lead to increased patient and carers' satisfaction. Empowering staff appears to have increased their willingness to undertake these conversations, which could lead to earlier intervention and minimise distress.


Subject(s)
Communication , Education, Nursing/organization & administration , Inservice Training , Interpersonal Relations , Models, Educational , Nurse-Patient Relations , Professional Competence , Professional-Family Relations , Humans , Interviews as Topic , Models, Nursing , Surveys and Questionnaires
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