An aromatherapy massage intervention on sleep in the ICU: A randomized controlled feasibility study.

We conducted a feasibility randomized controlled trial exploring the effect of aromatherapy massage on sleep in critically ill patients. Patients were randomized to receive aromatherapy massage or usual care, and feasibility of recruitment and outcome data completion was captured. Sleep (depth) was assessed through Bispectral Index monitoring and self/nurse-reported Richards-Campbell Sleep Questionnaires, and the Sleep in the ICU Questionnaire. Thirty-four patients participated: 17 were randomized to aromatherapy massage and 17 to control. Five participants who received the intervention completed outcomes for analysis (alongside eight controls). A larger study was deemed unfeasible in this population, highlighting the value of testing feasibility of complex interventions, such as massage for sleep in ICU.

Chronic illness and critical care-A qualitative exploration of family experience and need.

BACKGROUND: People with chronic illnesses such as cancer and cardiovascular disease are living longer and often require the support of critical care services. Current health care provision means patients may be discharged home once clinically stable despite still having high care demands including social, emotional, or physical needs. Families are often required to assume caregiving roles. Research into family burden using quantitative methods has increased awareness, however, little qualitative work exists and the development of support interventions for families is required. AIMS: To explore the experience and needs of family members of people with an existing chronic illness who are admitted to the Critical Care Unit (CCU), and to identify the desired components of a family support intervention in the form of a resource toolkit. STUDY DESIGN: A qualitative exploration of family experience and need, and content development for a resource toolkit using focus group methodology. Two focus groups and one face-to-face interview were conducted involving nine adult (≥18 years) family members of adult patients with chronic illness admitted to critical care in the preceding 9 months across two specialist hospitals in the UK. These were digitally recorded, transcribed, and thematically analysed. RESULTS: Four themes were identified: importance of communication, need for support, trauma of chronic illness, and having to provide "Do-it-Yourself" care. The immense responsibility of families to provide care throughout the illness trajectory is highlighted. Understandable information is essential for a family support toolkit. CONCLUSION: Family members often view a critical care episode broadly from diagnosis through to recovery/rehabilitation. Basic communication training skills within critical care should be ensured, alongside coordination of simple solutions. The potential traumatic impact on families should be highlighted early within the pathway, and positive aspects used to harness essential family support. A simple and coordinated approach to a toolkit is preferred. RELEVANCE TO CLINICAL PRACTICE: This study highlights that a critical care experience may impact broadly beyond CCU, and the importance of informing patients and families of this potential experience, prior to or on admission, to aid preparation. Further highlighted is the need for contemporaneous and accurate information from clinicians involved in care. Families report a better experience when there is good collaboration across critical care services and admitting clinical teams. Early involvement of families in overall discharge planning is essential to allow patients and families to adjust and plan for recovery.

Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study.

BACKGROUND: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. AIM: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. DESIGN: A feasibility study using a pre-post uncontrolled design. SETTING: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. CONCLUSION: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics. DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion. RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

Examining how early experiences in oncology settings influence nurses' career decisions.

The transition from nursing student to newly registered nurse is a complex process, and subsequent recruitment to cancer nursing posts can be challenging. This article details a service evaluation that aimed to describe the experiences of nursing students on placement and newly registered nurses or nursing associates working in a specialist cancer centre, and how these experiences might influence their future career aspirations. To gather data, the authors undertook a focus group with nursing students ( n= 8) and interviewed newly registered nurses or nursing associates ( n= 19). The data revealed four themes: navigating the nursing student experience; motivation to work in oncology; transition to staff nurse; and looking ahead. The service evaluation identified that education providers often lack awareness of cancer-specific content and career pathways. It also found that some aspects of cancer care, such as gaining specialist skills in systemic anticancer therapy, require particular attention since they were often anxiety-provoking for newly registered nurses.

SafeSpace: what is the feasibility and acceptability of a codesigned virtual reality intervention, incorporating compassionate mind training, to support people undergoing cancer treatment in a clinical setting?

OBJECTIVES: The SafeSpace study codesigned and tested a virtual reality (VR) intervention, incorporating relaxation and compassionate mind training to determine acceptability/feasibility in an oncology setting and evaluate impact on physical/psychological well-being and quality of life. DESIGN: A two-phase study. Phase I determined key characteristics using an experienced-based codesign approach. Phase II evaluated the intervention using various measures and qualitative interviews in a mixed methods approach. Descriptive statistics were used to analyse measures data and framework analysis to analyse interviews. SETTING: A specialist cancer centre, UK. PARTICIPANTS: 11 in phase I and 21 in phase II. Participants were in cancer treatment, recovery or palliative care. PRIMARY AND SECONDARY OUTCOME: Primary outcome: acceptability of the intervention, assessed by >60% uptake of three sessions. SECONDARY OUTCOMES: impact on psychological well-being using EQ-5D/QLQ-C30, Profile of Mood Scale, Warwick and Edinburgh Mental Well-being Scale, Depression and Anxiety Severity Scale 21, Self-Compassion Scale, Acceptance and Action Questionnaire and a locally developed questionnaire to capture self-compassion post use. Physiological impact was assessed by change in heart rate (HR)/HR variability and electrodermal activity (EDA). RESULTS: Twenty participants (mean age=48.7 years; SD=16.87); 65% (n=13) completed three sessions. Mental well-being improved following each use and from baseline to after session 3 (VR 1-z=2.846, p≤0.01; VR 2-z=2.501, p≤0.01; VR 3-z=2.492, p≤0.01). There was statistically significant difference in mean scores for EDA at mid-session and post session compared with pre session (F (1.658, 4.973)=13.364, p<0.05). There was statistically significant reduction in stress levels from baseline to post session 3. Participants found the intervention acceptable and highlighted areas for development. CONCLUSION: The intervention is acceptable and feasible and has shown positive effects on mental well-being/stress in the oncology setting. Larger studies are needed to confirm findings.

Filling the gaps: A mixed-methods study exploring the use of patient diaries in the critical care unit.

BACKGROUND: Survivors of critical illness often take time to recovery physically and psychologically from their critical care experience. There is tentative evidence suggesting that the use of a patient or family led diary with entries by nurses, doctors and allied health professionals may help the patient 'fill in the gaps' by making sense of a time they have forgotten. Many have confused or frightening memories and a diary can aid patients and their families in the recovery after critical illness. AIMS: A mixed methods study including a qualitative exploration of the impact of diaries on critical care patients in order to describe the long-term effects of patient diaries. METHODS: A two phase study including a prospective diary intervention and evaluation and subsequent in-depth interviews, using the principles of Grounded Theory. The instruments, Post Traumatic Stress Score-14 (PTSS-14) and EuroQol (EQ-5D-3L), were used to measured post-traumatic stress symptoms and quality of life in the year after diary. A questionnaire about diary use was completed by participants and content analysis of the diary was also undertaken, alongside basic demographics to explore patient characteristics. FINDINGS: For the 50 patients receiving the diary intervention, those completing a diary evaluation, 95% found them helpful and 90% found it helped fill memory gaps. Mean scores for PTSS-14 (cumulative) at four months and 12 months: 30.5 (SD=10.8) and 25.7 (SD=11.7). Mean EuroQol visual analogue scores at four months and 12 months were 77.8 (SD=14.3) and 71.8 (SD=18.5) respectively. Themes from subsequent interviews with eight patients included: providing holistic care, emotional support and empathy and dealing with loss of control. Data confirmed that whilst diaries had broad value in making sense of the critical care experience and their subsequent recovery, not all were able to read them again. Integrated analysis of four data sources suggested the core themes of the diary revealed its value as: a dynamic communication tool integral to holistic care and person-centredness; a reflection of the impact of a critical care event and a resource that helped give a sense of meaning to what had happened. CONCLUSION: Diaries can offer a means of providing clarity for patients who struggle to come to terms with their critical care experience and subsequent recovery, but should be given to patients with forethought and support. It remains unclear which types of patients might benefit most from diaries.

Synthesis of qualitative research studies regarding the factors surrounding UK critical care trial infrastructure.

Conducting clinical trials in critical care is integral to improving patient care. Unique practical and ethical considerations exist in this patient population that make patient recruitment challenging, including narrow recruitment timeframes and obtaining patient consent often in time-critical situations. Units currently vary significantly in their ability to recruit according to infrastructure and level of research activity. AIM: To identify variability in the research infrastructure of UK intensive care units and their ability to conduct research and recruit patients into clinical trials. DESIGN: We evaluated factors related to intensive care patient enrolment into clinical trials in the UK. This consisted of a qualitative synthesis carried out with two datasets of in-depth interviews (distinct participants across the two datasets) conducted with 27 intensive care consultants (n=9), research nurses (n=17) and trial coordinators (n=1) from 27 units across the UK. Primary and secondary analyses of two datasets (one dataset had been analysed previously) were undertaken in the thematic analysis. FINDINGS: The synthesis yielded an overarching core theme of normalising research, characterised by motivations for promoting research and fostering research-active cultures within resource constraints, with six themes under this to explain the factors influencing critical care research capacity: organisational, human, study, practical resources, clinician and patient/family factors. There was a strong sense of integrating research in routine clinical practice, and recommendations are outlined. CONCLUSIONS: The central and transferable tenet of normalising research advocates the importance of developing a culture where research is inclusive alongside clinical practice in routine patient care and is a requisite for all healthcare individuals from organisational to direct patient contact level.

Haemato-oncology patients' perceptions of health-related quality of life after critical illness: A qualitative phenomenological study.

INTRODUCTION: Haemato-oncology patients often require critical care support due to side-effects of treatment. Discharge can mark the start of an uncertain journey due to the impact of critical illness on health-related quality of life. Qualitatively establishing needs is a priority as current evidence is limited. AIMS: To qualitatively explore perceptions of haemato-oncology patients' health-related quality of life after critical illness and explore how healthcare professionals can provide long-term support. METHODS: Nine in-depth interviews were conducted three to eighteen months post-discharge from critical care. Phenomenology was used to gain deeper understanding of the patients' lived experience. SETTING: A 19-bedded Intensive Care Unit in a specialist cancer centre. FINDINGS: Five major themes emerged: Intensive care as a means to an end; Rollercoaster of illness; Reliance on hospital; Having a realistic/sanguine approach; Living in the moment. Haemato-oncology patients who experience critical illness may view it as a small part of a larger treatment pathway, thus health-related quality of life is impacted by this rather than the acute episode. CONCLUSIONS: Discharge from the intensive care unit can be seen as a positive end-point, allowing personal growth in areas such as relationships and living life to the full. The contribution of health-care professionals and support of significant others is regarded as critical to the recovery experience.

Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure.

Patients with chronic heart failure (CHF) have symptoms and concerns which are inadequately addressed. Patient-reported outcome measures (PROMs) can potentially improve the identification and management of advanced symptoms and palliative concerns. However, these have not been used in CHF. OBJECTIVES: To examine the feasibility and acceptability of using a PROM-the Integrated Palliative care Outcome Scale (IPOS)-together with heart failure nurse education and training to improve the identification and management of symptoms and concerns among patients with CHF. METHODS: A parallel, mixed methods design with an embedded qualitative component was used to examine the feasibility of recruitment, retention, intervention adherence/compliance and follow-up assessment completion (symptom burden, quality of life, psychological well-being). Patient and nurse qualitative semistructured interviews explored intervention and study design feasibility and its acceptability. RESULTS: Conversion to consent was 46.9% (372 screened, 81 approached, 38 recruited). 66% of patient participants completed the IPOS; 6% of IPOS questionnaire items were missing (non-response). Over two-thirds (65.6%) of these missing items related to three patients. No item was consistently missing; appetite was the most frequent missing item (1.4%). 92% of participants who completed the IPOS completed all follow-up assessments (1-2 days, 1-2 weeks and 4-6 weeks post-IPOS completion) with no missing data. The a priori feasibility objectives were met. Patients and nurses reported the intervention and study design feasible and acceptable. CONCLUSIONS: A palliative-specific PROM-based intervention is feasible and acceptable to both patients with CHF and nurses in nurse-led disease management clinics for the purposes of both clinical care and research.

A qualitative exploration into the long-term perspectives of patients receiving critical care diaries across the United Kingdom.

BACKGROUND: Increasing evidence suggests the use of a diary with entries by nurses, doctors, AHPs and the patient's family can potentially help by "filling in the gaps" and help the patient make sense of a time that they have forgotten or feel confused and have fears about. AIMS: A qualitative exploration of the impact of diaries on critical care patients around the United Kingdom in order to describe the long-term effects of patient diaries. METHODS: In-depth qualitative interviews, using principles of grounded theory, via telephone and email were undertaken. The sample included former patients who responded via adverts on critical care charity/support websites. People who had diaries in the previous 1-3 years were asked about their experiences. FINDINGS: Eight people who had been patients in various critical care units across the United Kingdom and who had a critical care diary were interviewed. All reported value in having diaries, however, participants reported needing support when first receiving the diary to understand events that took place in critical care. CONCLUSION: Diaries can offer a means of filing the gaps for patients who struggle with coming to terms with their critical care recovery, but should be given to patients with forethought and subsequent support.

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making.

BACKGROUND: Little research has examined the involvement of critical care outreach teams in end-of-life decision making. OBJECTIVE: To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. METHODS: A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. RESULTS: Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. CONCLUSION: A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.

After critical care: patient support after critical care. A mixed method longitudinal study using email interviews and questionnaires.

PURPOSE: To explore experiences and needs over time, of patients discharged from ICU using the Intensive Care Experience (ICE-q) questionnaire, Hospital Anxiety and Depression Scale (HADS) and EuroQoL (EQ-5D), associated clinical predictors (APACHE II, TISS, Length of stay, RIKER scores) and in-depth email interviewing. METHODS: A mixed-method, longitudinal study of patients with >48hour ICU stays at 2 weeks, 6 months, 12 months using the ICE-q, HADS, EQ-5D triangulated with clinical predictors, including age, gender, length of stay (ICU and hospital), APACHE II and TISS. In-depth qualitative email interviews were completed at 1 month and 6 months. Grounded Theory analysis was applied to interview data and data were triangulated with questionnaire and clinical data. RESULTS: Data was collected from January 2010 to March 2012 from 77 participants. Both mean EQ-5D visual analogue scale, utility scores and HADS scores improved from 2 weeks to 6 months, (p=<0.001; p=<0.001), but between 6 and 12 months, no change was found in data from either questionnaire, suggesting improvements level off. These variations were reflected in qualitative data themes: rehabilitation/recovery in the context of chronic illness; impact of critical care; emotional and psychological needs (including sub-themes of: information needs and relocation anxiety). The overarching, core theme related to adjustment of normality. CONCLUSIONS: Patient recovery in this population appears to be shaped by ongoing illness and treatment. Email interviews offer a convenient method of gaining in-depth interview data and could be used as part of ICU follow-up.

Insights into the experiences of patients with cancer in London: framework analysis of free-text data from the National Cancer Patient Experience Survey 2012/2013 from the two London Integrated Cancer Systems.

OBJECTIVE: To shed light on experiences of patients with cancer in London National Health Service (NHS) trusts that may not be fully captured in national survey data, to inform improvement action plans by these trusts. DESIGN: Framework analysis of free-text data from 2012/2013 National Cancer Patient Experience Survey (NCPES) from the 2 London Integrated Cancer Systems. SETTING AND PARTICIPANTS: Patients with a cancer diagnosis treated by the NHS across 27 trusts in London. MAIN OUTCOME MEASURES: Free-text data received from patients categorised into what patients found good about their cancer care and what could be improved. METHODS: Using Framework analysis, a thematic framework was created for 15,403 comments from over 6500 patients. Themes were identified across the London data set, by tumour group and by trust. RESULTS: Two-thirds of free-text comments from patients in London were positive and one-third of those related to the good quality of care those patients received. However, the majority of comments for improvement related to quality of care, with a focus on poor care, poor communication and waiting times in outpatient departments. Additionally, 577 patients (9% of those who returned free-text data in London) commented on issues pertaining to the questionnaire itself. Some patients who experienced care from multiple trusts were unclear on how to complete the questionnaire for the single trust whose care they were asked to comment on, others said the questions did not fit their experiences. CONCLUSIONS: NCPES free-text analysis can shed light on the experiences of patients that closed questions might not reveal. It further indicates that there are issues with the survey itself, in terms of ambiguities in the questionnaire and difficulties in identifying patients within specific trusts. Both of these issues have the potential to contribute to knowledge and understanding of the uses and limitations of free-text data in improving cancer services.

Thirty-day mortality in critical care outreach patients with cancer: an investigative study of predictive factors related to outreach referral episodes.

AIM: To establish factors that predict outcome in critically ill, deteriorating cancer patients through critical care outreach referral episodes, characteristics and care reviews. METHODS: A population-based prospective and retrospective study was undertaken with analysis exploring predictive factors regarding critically ill cancer patients referred to a critical care outreach team. Data collected included: diagnosis; presenting problem; early warning scores at referral and at deterioration; physiological and observation data; admission to critical care, length of stay; 30-day mortality; limitation of care including precipitating DNAR orders and documentation of not for CCU admission/intervention). RESULTS: Data were collected on 407 episodes from 318 patients over a period of 8 months from 2006 to 2007. Outreach initiated decisions to limit care with medical teams in 32.2% (n=103/318) of all patients. Early warning scores were not predictive of outcome. A high heart rate at referral (HR), a high potassium, low SpO2 at time of deterioration were independently predictive of 30-day mortality. The logistic regression (LR) model, using these three variables correctly predicts the 30-day outcome of 71% of the patients, demonstrating a relatively high predictability in this patient population. The odds of mortality increase with a higher potassium, heart rate and as the oxygen saturation at deterioration (DSpO(2)) worsen. Management factors included limitation of care, which is highly associated with 30-day mortality. Cancer patients recently receiving chemotherapy may have an increased mortality once admitted to critical care. Being a haemato-oncology patient, or the timeliness of critical care outreach referral does not appear to affect 30-day mortality. CONCLUSION: The LR model was able to predict 30-day outcome of 71% of the patients, demonstrating a reasonably high predictability in this cancer patient population. Critical care outreach initiated discussions on limiting treatment which had an effect on mortality.