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1.
Palliat Care Soc Pract ; 17: 26323524231182724, 2023.
Article in English | MEDLINE | ID: mdl-37440785

ABSTRACT

Background: Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development. Objectives: To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs). Design: This was a mixed-methods study using a convergent, parallel mixed-methods design. Methods: We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff. Results: Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26-95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there. Conclusions: Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support.

2.
Nurs Open ; 10(8): 5500-5508, 2023 08.
Article in English | MEDLINE | ID: mdl-37141442

ABSTRACT

AIM: Develop and test a data collection tool-Neurological End-Of-Life Care Assessment Tool (NEOLCAT)-for extracting data from patient health records (PHRs) on end-of-life care of neurological patients in an acute hospital ward. DESIGN: Instrument development and inter-rater reliability (IRR) assessment. METHOD: NEOLCAT was constructed from patient care items obtained from clinical guidelines and literature on end-of-life care. Expert clinicians reviewed the items. Using percentage agreement and Fleiss' kappa we calculated IRR on 32 nominal items, out of 76 items. RESULTS: IRR of NEOLCAT showed 89% (range 83%-95%) overall categorical percentage agreement. The Fleiss' kappa categorical coefficient was 0.84 (range 0.71-0.91). There was fair or moderate agreement on six items, and moderate or almost perfect agreement on 26 items. CONCLUSION: The NEOLCAT shows promising psychometric properties for studying clinical components of care of neurological patients at the end-of-life on an acute hospital ward but could be further developed in future studies.


Subject(s)
Terminal Care , Humans , Reproducibility of Results , Observer Variation , Data Collection , Hospitals
3.
Front Rehabil Sci ; 4: 1298553, 2023.
Article in English | MEDLINE | ID: mdl-38239628

ABSTRACT

Background: People with advanced cancer often experience reduced functional capacity and quality of life. Research evaluating the potential benefit of exercise programmes for limiting such decline is accumulating. However, an appraisal of the evidence that considers the patient experience of exercise programmes, what mattered to them and what motivated and encouraged them to engage in exercise, has not been published. The aim of this meta-synthesis was to identify, appraise and bring together evidence from qualitative research in this area. Methods: Four databases were searched from 2nd January to 8th January 2023 for relevant studies. Qualitative studies investigating the experience of exercise as an intervention for adults with advanced cancer were included. Major findings and study characteristics were extracted. Findings were summarised, compared, and synthesised using meta-synthesis. Results: Eight studies were eligible and generated seven sub themes which informed the construction of three key themes: (1) Impact of Delivery Method; (2) Emerging Motivation; and (3) Physical Impact. Conclusion: The analysis revealed that exercise has the potential to positively influence all four dimensions of well-being: physical, psychological, social, and spiritual, for people with advanced cancer. Future research is required to consider the differential impact that the type, volume, and duration of exercise may have on the exercise experience for this patient group.

4.
Palliat Med ; 36(3): 478-488, 2022 03.
Article in English | MEDLINE | ID: mdl-35354412

ABSTRACT

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.


Subject(s)
After-Hours Care , Palliative Care , Terminal Care , Caregivers , Humans , Retrospective Studies , Scotland
5.
PLoS One ; 16(12): e0261175, 2021.
Article in English | MEDLINE | ID: mdl-34914733

ABSTRACT

INTRODUCTION: There is a pressing need for a holistic characterisation of people with incurable cancer. In this group, where quality of life and improvement of symptoms are therapeutic priorities, the physical and biochemical manifestations of cancer are often studied separately, giving an incomplete picture. In order to improve care, spur therapeutic innovation, provide meaningful endpoints for trials and set priorities for future research, work must be done to explore how the tumour influences the clinical phenotype. Characterisation of the host-tumour interaction may also provide information regarding prognosis, allowing appropriate planning of investigations, treatment and referral to palliative medicine services. METHODS: Routine EValuatiOn of people LivIng with caNcer (REVOLUTION) is a prospective observational study that aims to characterise people with incurable cancer around five key areas, namely body composition, physical activity, systemic inflammatory response, symptoms, and quality of life by developing a bio-repository. Participants will initially be recruited from a single centre in the UK and will have assessments of body composition (bio-impedance analysis [BIA] and computed tomography [CT]), assessment of physical activity using a physical activity monitor, measurement of simple markers of inflammation and plasma cytokine proteins and three symptom and quality of life questionnaires. DISCUSSION: This study aims to create a comprehensive biochemical and clinical characterisation of people with incurable cancer. Data in this study can be used to give a better understanding of the 'symptom phenotype' and quality of life determinants, development of a profile of the systemic inflammatory response and a detailed characterisation of body composition.


Subject(s)
Activities of Daily Living/psychology , Neoplasms/physiopathology , Neoplasms/psychology , Palliative Care , Quality of Life , Adolescent , Adult , Aged , Aged, 80 and over , Female , Follow-Up Studies , Humans , Male , Middle Aged , Prognosis , Prospective Studies , Surveys and Questionnaires , Young Adult
6.
J Cachexia Sarcopenia Muscle ; 12(6): 2034-2044, 2021 12.
Article in English | MEDLINE | ID: mdl-34612012

ABSTRACT

BACKGROUND: Despite rehabilitation being increasingly advocated for people living with incurable cancer, there is limited evidence supporting efficacy or component parts. The progressive decline in function and nutritional in this population would support an approach that targets these factors. This trial aimed to assess the feasibility of an exercise and nutrition based rehabilitation programme in people with incurable cancer. METHODS: We randomized community dwelling adults with incurable cancer to either a personalized exercise and nutrition based programme (experimental arm) or standard care (control arm) for 8 weeks. Endpoints included feasibility, quality of life, physical activity (step count), and body weight. Qualitative and health economic analyses were also included. RESULTS: Forty-five patients were recruited (23 experimental arm, 22 control arm). There were 26 men (58%), and the median age was 78 years (IQR 69-84). At baseline, the median BMI was 26 kg/m2 (IQR: 22-29), and median weight loss in the previous 6 months was 5% (IQR: -12% to 0%). Adherence to the experimental arm was >80% in 16/21 (76%) patients. There was no statistically significant difference in the following between trial arms: step count - median % change from baseline to endpoint, per trial arm (experimental -18.5% [IQR: -61 to 65], control 5% [IQR: -32 to 50], P = 0.548); weight - median % change from baseline to endpoint, per trial arm (experimental 1%[IQR: -3 to 3], control -0.5% [IQR: -3 to 1], P = 0.184); overall quality of life - median % change from baseline to endpoint, per trial arm (experimental 0% [IQR: -20 to 19], control 0% [IQR: -23 to 33], P = 0.846). Qualitative findings observed themes of capability, opportunity, and motivation amongst patients in the experimental arm. The mean incremental cost of the experimental arm versus control was £-319.51 [CI -7593.53 to 6581.91], suggesting the experimental arm was less costly. CONCLUSIONS: An exercise and nutritional rehabilitation intervention is feasible and has potential benefits for people with incurable cancer. A larger trial is now warranted to test the efficacy of this approach.


Subject(s)
Exercise , Neoplasms , Nutritional Status , Aged , Aged, 80 and over , Feasibility Studies , Humans , Male , Neoplasms/therapy , Quality of Life
8.
BMC Geriatr ; 21(1): 431, 2021 07 18.
Article in English | MEDLINE | ID: mdl-34275442

ABSTRACT

BACKGROUND: Internationally, 2-5% of people live in residential or nursing homes, many with multi-morbidities, including severe cognitive impairment. Pain is frequently considered an expected part of old age and morbidity, and may often be either under-reported by care home residents, or go unrecognized by care staff. We conducted a systematic scoping review to explore the complexity of pain recognition, assessment and treatment for residents living in care homes, and to understand the contexts that might influence its management. METHODS: Scoping review using the methodological framework of Levac and colleagues. Articles were included if they examined pain assessment and/or management, for care or nursing home residents. We searched Medline, CINAHL, ASSIA, PsycINFO, EMBASE, Cochrane Library, and Google Scholar; reference lists were also screened, and website searches carried out of key organisations. Conversations with 16 local care home managers were included to gain an understanding of their perspective. RESULTS: Inclusion criteria were met by 109 studies. Three overarching themes were identified: Staff factors and beliefs - in relation to pain assessment and management (e.g. experience, qualifications) and beliefs and perceptions relating to pain. Pain assessment - including use of pain assessment tools and assessment/management for residents with cognitive impairment. Interventions - including efficacy/effects (pharmaceutical/non pharmaceutical), and pain training interventions and their outcomes. Overall findings from the review indicated a lack of training and staff confidence in relation to pain assessment and management. This was particularly the case for residents with dementia. CONCLUSIONS: Further training and detailed guidelines for the appropriate assessment and treatment of pain are required by care home staff. Professionals external to the care home environment need to be aware of the issues facing care homes staff and residents in order to target their input in the most appropriate way.


Subject(s)
Delivery of Health Care , Nursing Homes , Humans , Pain Measurement
9.
BMJ Support Palliat Care ; 11(3): 344-350, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34215568

ABSTRACT

BACKGROUND: Virtual reality (VR) technology as a therapeutic intervention has been gaining attention in healthcare settings in recent years. Studies suggest that using the technology can help alleviate symptoms such as pain and anxiety and induce positive emotions for people in hospital. Managing symptoms and promoting emotional and psychological well-being are core palliative care goals of relieving suffering of people with life-limiting illness. Accordingly, VR may be highly beneficial for use in hospice care yet remains underdeveloped in such settings. This qualitative study aimed to trial the technology and consider what benefits may emerge for hospice in patients. METHODS: A one-off VR session was offered to patients at a hospice in Scotland. Sessions were observed by a researcher and followed by qualitative semi-structured interviews to discuss the experience with those who took part. Interviews were audio recorded, transcribed and thematically analysed. RESULTS: Nineteen hospice patients successfully tried an immersive VR experience. VR sessions were acceptable for people within the hospice environment. The majority of participants enjoyed the experience. Many expressed joy and delight at the process. VR holds possibilities for relieving symptoms such as pain and anxiety frequently experienced by people in hospices. Furthermore, the technology offers the capacity to reconnect with a previous sense of self and to allow respite through the capacity to transcend current reality and connect with another meaningful reality. This exploratory study offers a starting point for larger studies to investigate the utility of VR for hospice patients.


Subject(s)
Hospice Care , Hospice and Palliative Care Nursing , Hospices , Virtual Reality , Humans , Palliative Care
10.
BMC Palliat Care ; 19(1): 119, 2020 Aug 07.
Article in English | MEDLINE | ID: mdl-32767979

ABSTRACT

BACKGROUND: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. METHODS: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). RESULTS: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121-£190 (excluding volunteer contribution) to £172-£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. CONCLUSIONS: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.


Subject(s)
Day Care, Medical/standards , Health Care Costs/statistics & numerical data , Palliative Care/economics , Palliative Care/standards , Adult , Cohort Studies , Cost-Benefit Analysis , Day Care, Medical/methods , Day Care, Medical/statistics & numerical data , Female , Humans , Male , Middle Aged , Palliative Care/statistics & numerical data , United Kingdom
11.
Support Care Cancer ; 28(4): 1877-1889, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31359182

ABSTRACT

PURPOSE: Recent guidelines by the European Society for Clinical Nutrition and Metabolism (ESPEN) have advocated increased attention to nutritional support in all patients with cancer; however, little is known about the optimal type of nutritional intervention. The aim of this review was to assess the current evidence for nutrition support in patients with incurable cancer. METHODS: This review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Embase, MEDLINE and CINAHL were searched from 1990 to 2018. Evidence was appraised using a modified risk of bias table, based on guidance from the Cochrane Handbook for Systematic Reviews of Interventions. RESULTS: Sixty studies were assessed of which twelve met the eligibility criteria. Eleven studies examined body composition, with six studies reporting improvements in weight. Six studies examined nutritional status with three studies reporting an improvement. Nine studies examined nutritional intake with six showing improvements including significant improvements in dietary and protein intake. Ten studies examined quality of life, with six studies reporting improvements following intervention. The most common nutritional interventions examined were nutrition counselling and dietary supplementation. CONCLUSIONS: There is moderate quality evidence to support the need for increased attention to nutrition support in patients with incurable cancer; however, despite some statistically significant results being reported, the clinical effects of them were small. Key questions remain as to the optimal timing for these interventions to be implemented (e.g. cachexia stage, illness stage and timing with anticancer therapy) and the most appropriate endpoint measures.


Subject(s)
Cachexia/diet therapy , Neoplasms/diet therapy , Nutritional Support/methods , Body Weight , Cachexia/etiology , Cachexia/metabolism , Counseling , Dietary Supplements , Humans , Neoplasms/drug therapy , Neoplasms/metabolism , Nutritional Status , Observational Studies as Topic , Quality of Life , Randomized Controlled Trials as Topic
12.
Br J Pain ; 13(4): 244-255, 2019 Nov.
Article in English | MEDLINE | ID: mdl-31656631

ABSTRACT

INTRODUCTION: Chronic pelvic pain (CPP) - defined as intermittent or constant pain in the lower abdomen or pelvis of at least 6 months' duration, not occurring exclusively with menstruation or intercourse and not associated with pregnancy - is estimated to affect 6-27% of women worldwide. In the United Kingdom, over 1 million women suffer from CPP, which has been highlighted as a key area of unmet need. Current medical treatments for CPP are often associated with unacceptable side effects. A specific style of acupuncture, the meridian balance method electro-acupuncture (BMEA) and traditional Chinese medicine health consultation (TCM HC (BMEA + TCM HC = BMEA treatment)), may be effective for CPP in women. AIM: Three focus group discussions and semi-structured telephone interviews were embedded in a randomised controlled feasibility trial to gain in-depth description of the perceived benefits of the participants' respective interventions. METHODS: Women with CPP were randomised into the BMEA treatment, TCM HC or National Health Service standard care (NHS SC). Focus group discussions were recorded, transcribed and analysed thematically. Semi-structured telephone interviews were conducted post focus group discussions. FINDINGS: A total of 30 women were randomised into BMEA treatment, TCM HC or NHS SC. A total of 11 participants attended the three focus group discussions. Thematic analysis of focus group discussions showed: a perceived pain reduction, enhanced sleep, energy level and sense of well-being in the BMEA treatment and TCM HC groups; a dislike for the adverse effects of medications, frustration at the lack of effective treatment, heavy reliance on medications and services that are helpful, in the NHS SC group. Semi-structured telephone interviews showed that the methodology was acceptable to the participants. CONCLUSION: The embedded focus group discussions captured the rich and complex narratives of the participants and provided insights into the perceived benefits of the BMEA treatment, TCM HC and NHS SC interventions.

13.
Scand J Caring Sci ; 33(2): 342-350, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30488975

ABSTRACT

RATIONALE: Healthcare providers' beliefs, attitudes, experiences and knowledge, which guide the care they deliver, are the key factors influencing the quality of palliative care. Education and coaching innovation are needed to translate research outcomes and adopt evidence-based nursing care into practice. OBJECTIVES: To evaluate the impact of an advanced educational and coaching programme in a family systems' nursing approach for palliative care nurses in a home-care setting. METHODS: A quasi-experimental study using qualitative data from open-ended questions to augment the quantitative outcome study that included a single-group, pre- and post-test design. A total population sample of nurses was recruited from a specialised palliative home care unit at a university hospital. The study utilised two self-reported questionnaires. RESULTS: There was a statistically significant increase in the nurses' critical appraisal of clinical nursing practice related to family nursing after participation in the educational programme than before. No statistical difference was found in items related to nurses' experience of the interaction and reciprocity in the nurse-family relationship after participation in the programme than compared to before or in nurses' cancer-related beliefs. However, there was an overall significant positive change found in attitudes towards families in the total score of the Family Practice Scale. Nurses were also more positive about the further development of their knowledge and skills in advanced family nursing evident in the qualitative data. CONCLUSION: An advanced educational intervention programme was successful in improving the nurses' knowledge, skills, satisfaction and confidence in relation to applied family nursing approach within the context of caring for families affected by advanced/final stage cancer. However, further refinement of the implementation process is needed to enhance family care improvement and the nurses' professional development in advanced family nursing in specialised palliative care.


Subject(s)
Caregivers/education , Family Nursing/standards , Health Personnel/education , Home Care Services/standards , Hospice and Palliative Care Nursing/education , Palliative Care/standards , Practice Guidelines as Topic , Adult , Female , Health Knowledge, Attitudes, Practice , Humans , Iceland , Male , Middle Aged , Surveys and Questionnaires
14.
Palliat Care Soc Pract ; 13: 2632352419885384, 2019.
Article in English | MEDLINE | ID: mdl-32215372

ABSTRACT

The traditional approach to research ethics is to ensure that all ethical issues are adhered to through the scrutiny of research proposals by research ethics committees, themselves sitting within national research governance frameworks. The current approach implies that all potential ethical issues can be considered and mitigated prior to the research. This article is a perspective piece whereby we consider how this approach, on its own, is not enough to ensure ethical practice. We draw attention to the limitations of current ethical procedures in the inherent detachment between the researcher and research participants. We argue that applying a person-centred approach to research ethics allows for contextual and situational factors and places the relationship between research participants and researcher as central.

15.
Br J Pain ; 12(4): 238-249, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30349698

ABSTRACT

INTRODUCTION: Chronic pelvic pain (CPP) is estimated to affect 6%-27% of women worldwide. In the United Kingdom, over 1 million women suffer from CPP and it has been highlighted as a key area of unmet need. Standard treatments are associated with unacceptable side effects. The meridian balance method electro-acupuncture (BMEA), and traditional Chinese medicine health consultation (TCM HC) (BMEA + TCM HC = BMEA treatment) may be an effective adjunct to standard treatment. AIM: The aim of our study was to evaluate the feasibility of a future trial, to determine the effectiveness of the BMEA treatment for CPP in women. The primary objectives were to determine recruitment and retention rates. The secondary objectives were to assess the effectiveness of the BMEA treatment and acceptability of the study's methodology. METHODS: Women with CPP were randomised into BMEA treatment (group 1), TCM HC alone (group 2) (each intervention administered twice weekly for 4 weeks) or National Health Service standard care (NHS SC, group 3). Primary outcomes were assessed by the proportion of eligible participants randomised, and the proportion of randomised participants who returned follow-up questionnaires. Interventions were assessed by validated pain/physical/emotional functioning questionnaires at baseline (0), 4, 8 and 12 weeks. Focus groups and semi-structured telephone interviews were embedded in the study. RESULTS: A total of 30 women (51% of those referred) were randomised over 8 months. Retention rates were 80% (95% confidence interval (CI): 74-96), 53% (95% CI: 36-70) and 87% (95% CI: 63-90), in groups 1, 2, and 3, respectively. Qualitative data suggested a favourable trial experience in groups 1 and 3. DISCUSSION: Group 2 retention rate was problematic and has implications for our next trial. CONCLUSION: Our study suggests that a future trial to determine the effectiveness of BMEA treatment for women with CPP is feasible but with modifications to the study design.

16.
Int J Palliat Nurs ; 24(4): 170-177, 2018 Apr 02.
Article in English | MEDLINE | ID: mdl-29703115

ABSTRACT

BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion. OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland. METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet. RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion. CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.


Subject(s)
Advance Care Planning , Lung Neoplasms/nursing , Patient Care Team , Aged , Aged, 80 and over , Female , Hospice and Palliative Care Nursing , Humans , Interviews as Topic , Male , Middle Aged , Pilot Projects
17.
Int J Palliat Nurs ; 24(3): 115-122, 2018 03 02.
Article in English | MEDLINE | ID: mdl-29608386

ABSTRACT

BACKGROUND: Goal setting is recognised as an important way of supporting people to live as actively as possible until death. However, there is little agreement about how goal setting should be handled or delivered by health professionals in everyday practice. AIM: To investigate health-care practitioners' understanding and practice of patient-centred goal setting in a hospice. METHODS: A comparative case study of 10 healthcare practitioners in one hospice. Non-participant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis. RESULTS: Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. Participants' goal-setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient-centred goals. CONCLUSION: While goal setting is valued, it is practiced in an implicit, practitioner-centred and inconsistent manner. A more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.


Subject(s)
Attitude of Health Personnel , Goals , Hospice and Palliative Care Nursing , Nursing Process , Patient-Centered Care , Case-Control Studies , Humans , Interviews as Topic , Scotland
18.
Indian J Palliat Care ; 24(1): 3-8, 2018.
Article in English | MEDLINE | ID: mdl-29440798

ABSTRACT

CONTEXT: Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. AIMS: This study aims to evaluate the EHA palliative care project. SETTINGS AND DESIGN: Rapid evaluation method using a mixed method realist approach at the five project hospital sites. METHODS: An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. ANALYSIS: Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). RESULTS: Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. CONCLUSIONS: Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

20.
Palliat Med ; 32(2): 581-588, 2018 02.
Article in English | MEDLINE | ID: mdl-28604233

ABSTRACT

BACKGROUND: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. AIM: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). DESIGN: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. SETTING AND PARTICIPANTS: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ⩾12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. RESULTS: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs ( p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness ( p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. CONCLUSION: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.


Subject(s)
Caregivers/education , Curriculum , Education, Distance , Palliative Care , Adult , Aged , Feasibility Studies , Female , Humans , Interviews as Topic , Male , Middle Aged , Nutritional Sciences/education , Pain Management , Qualitative Research , Self Efficacy
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