Emily Harrop

“It’s alright to ask for help”: findings from a qualitative study exploring the information and support needs of family carers at the end of life

BackgroundFamily carers play an essential role in providing end-of-life care to their relatives but have been found to experience uncertainty and a lack of confidence in fulfilling their caregiving roles, prompting recent calls for educational or information based resources to be developed for carers.MethodsWe carried out four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, to explore the information and support needs of family carers.ResultsOur findings support previous research by highlighting a number of care situations where carers experience uncertainty and could seemingly benefit from greater information or instruction. Three main themes were identified which reflected carer experiences and needs in relation to potential information giving or educational interventions. These have been described as the knowledge and competence of carers; the preparedness of carers and low levels of carer identification with, and confidence in their roles as ‘carers’, which influences help seeking behaviours; and in turn how potential supportive interventions might be received by carers.ConclusionsFamily carers experience multiple needs for information and education, but meeting these needs remains a challenge. Our results suggest three domains which could underpin this type of intervention: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building. We recommend an integrated information giving approach which addresses these domains by combining a resource pack for carers with a more explicit acknowledging role for health professionals. Together these could provide key information and also build confidence amongst family carers to ask for further support and advice as needed.

Why do patients decline surgical trials? Findings from a qualitative interview study embedded in the Cancer Research UK BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy)

BackgroundSurgical trials have typically experienced recruitment difficulties when compared with other types of oncology trials. Qualitative studies have an important role to play in exploring reasons for low recruitment, although to date few such studies have been carried out that are embedded in surgical trials.The BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy) is a study to determine the feasibility of randomisation to open versus laparoscopic access/robotic cystectomy in patients with bladder cancer. We describe the results of a qualitative study embedded within the clinical trial that explored why patients decline randomisation.MethodsTen semi-structured interviews with patients who declined randomisation to the clinical trial, and two interviews with recruiting research nurses were conducted. Data were analysed for key themes.ResultsThe majority of patients declined the trial because they had preferences for a particular treatment arm, and in usual practice could choose which surgical method they would be given. In most cases the robotic option was preferred. Patients described an intuitive ‘sense’ that favoured the new technology and had carried out their own inquiries, including Internet research and talking with previous patients and friends and family with medical backgrounds. Medical histories and lifestyle considerations also shaped these personalised choices. Of importance too, however, were the messages patients perceived from their clinical encounters. Whilst some patients felt their surgeon favoured the robotic option, others interpreted ‘indirect’ cues such as the ‘established’ reputation of the surgeon and surgical method and comments made during clinical assessments. Many patients expressed a wish for greater direction from their surgeon when making these decisions.ConclusionFor trials where the ‘new technology’ is available to patients, there will likely be difficulties with recruitment. Greater attention could be paid to how messages about treatment options and the trial are conveyed across the whole clinical setting. However, if it is too difficult to challenge such messages, then questions should be asked about whether genuine and convincing equipoise can be presented and perceived in such trials. This calls for consideration of whether alternative methods of generating evidence could be used when evaluating surgical techniques which are established and routinely available.Trial registrationTrial registration number: ISRCTN38528926 (11 December 2008).

Journey from Pediatric Intensive Care to Palliative Care

BACKGROUND Approximately two-thirds of patients who die in the pediatric intensive care unit (PICU) do so following withdrawal of intensive care treatment. Most often when intensive care treatment is withdrawn, the child remains in the PICU for end-of-life care. OBJECTIVES This study aimed to examine the process of referral over a 6-year period of children from a PICU to childrens hospices for end-of-life care. METHODS This study carried out a retrospective review of all children referred from a large tertiary-level United Kingdom PICU to childrens hospices over a 6-year period. Information was collected both from the PICU and from the hospices involved. RESULTS A total of 12 children were transferred over the 6-year period. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with time from initial referral to transfer taking an additional 4 days such that the mean stay on the PICU prior to transfer was 13 days. Two-thirds of families had prior contact with the palliative care team involved. One-third of the patients were transported to the hospice while still dependent on mechanical invasive ventilatory support. All children were extubated by a PICU consultant within 90 minutes of arrival at the hospice. Overall, eight children died soon after transfer, with four children surviving beyond 2 weeks after transfer. CONCLUSION This study suggests that there is a feasible alternative location for withdrawal of intensive care and/or compassionate extubation. The study found that one-third of children transferred to hospice for end-of-life care survived the initial withdrawal of intensive therapy; hence, parallel planning should be discussed prior to transfer to hospice. Information gained from this study has contributed toward the creation of a national care pathway to support extubation within a childrens palliative care framework.

“I didn’t really understand it, I just thought it’d help”: exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial

BackgroundFew studies have explored in depth the experiences of patients with advanced cancer who are participating in clinical investigational medicinal product trials. However, integrated qualitative studies in such trials are needed to enable a broader evaluation of patient experiences in the trial, with important ethical and practical implications for the design and conduct of similar trials and treatment regimes in the future.MethodsTen participants were recruited from the control and intervention arms of FRAGMATIC: a non-placebo trial for patients with advanced lung cancer. Participants were interviewed at up to three time points during their time in the trial. Interviews were analysed using Interpretive Phenomenological Analysis.ResultsPatients were motivated to join the trial out of hope of medical benefit and altruism. Understanding of randomisation was mixed and in some cases poor, as was appreciation of trial purpose and equipoise. The trial was acceptable to and evaluated positively by most participants; participants receiving the intervention focused on the potential treatment benefits they hoped they would receive, whilst participants in the control arm found alternative reasons, such as altruism, personal fulfilment and positive attention, to commit to and perceive benefits from the trial. However, whilst experiences were generally very positive, poor understanding, limited engagement with trial information and focus on treatment benefits amongst some participants give cause for concern.ConclusionsBy exploring longitudinally the psychological, emotional and cognitive domains of trial participation, we consider potential harms and benefits of participation in non-placebo trials amongst patients with advanced lung cancer and identify several implications for future research with and care for patients with advanced cancer.Trial registrationISRCTN80812769. Registered on 8 July 2005.

QUALZICE: A QUALitative exploration of the experiences of the participants from the ZICE clinical trial (metastatic breast cancer) receiving intravenous or oral bisphosphonates

BackgroundThis qualitative sub-study aimed to explore the experiences of participants on the National Cancer Research Institute ZICE clinical trial, a randomised trial assessing two types of bisphosphonate treatment in breast cancer patients with bone metastases. Participants in the clinical trial were randomly allocated to receive either zoledronate, delivered by an intravenous (IV) infusion at clinic, or oral ibandronate, taken at home.MethodsQualitative research interviews were conducted with participant groups organised by treatment and location. Interviews covered experiences and understanding of bisphosphonate treatment, the experience of the delivery mechanisms (IV or oral), side effects and benefits, and quality of life issues. The analytic framework was interpretative phenomenological analysis.ResultsThis paper reports on one of four superordinate themes: participants’ experience of the ZICE trial, which explores the participants’ experiences with clinical trial-related processes. Results show that participants were generally satisfied with their randomised treatment, although most participants had an initial preference for oral bisphosphonates. Some difficulties were reported from participants for both interventions: needle phobia, poor veins, difficulty with swallowing and gastric side effects, but pain control was improved with both modes of delivery. However, the infused bisphosphonate was reported to lose effectiveness after three weeks for some participants, whereas the oral bisphosphonate was reported to give consistent pain control. Geographical location and distance to travel made little difference to convenience of access to clinic as the reported lengths of travel time were similar due to traffic congestion in the urban areas. Most participants understood the trial processes, such as randomisation, and information about bisphosphonates but some participants showed little understanding of certain aspects of the trial. Some participants reported difficulties in accessing dental treatment due to their dentist’s perceptions of bisphosphonate treatment.ConclusionsIn trials of medicinal products, especially when testing for non-inferiority, participants’ preferences and idiosyncrasies in relation to treatments should not be assumed. This study has shown that in a trial context, participants’ views can usefully add to the main trial outcomes and they should be taken into account when prescribing in the real world.Trial registrationISRCTN13914201. Main ZICE MREC: 05/MRE09/57. CRUK E/04/022.

Learning from paediatric palliative care: Lessons for adult practice:

Paediatric palliative care is an emerging subspecialty of paediatrics that has developed over the last decade, relatively distinctly from adult palliative care. In recent years, there have been multiple calls in the paediatric literature for the subspecialty to learn from and emulate its wellestablished adult counterpart.1 Our experience, however, is that the converse is also true. The few adult-trained palliative care specialists working in paediatric services are becoming increasingly aware of useful lessons that can be learned from their paediatric colleagues. Although adult and paediatric palliative care share the same fundamental principles – active, patient-centred care striving to enhance quality of life, there are significant differences in needs and practice. Whereas adult palliative care has traditionally focused on patients with cancer, paediatric services look after children with a diverse range of life-limiting conditions, most commonly genetic/congenital diseases (41%) and neuromuscular conditions (39%). Disease trajectories tend to be long and particularly unpredictable. Emergencies, often respiratory crises, occur relatively frequently and usually respond to active intervention. Prescribing for children is influenced by many factors, including body weight and low acceptability of the subcutaneous route of drug administration. Families carry a particularly heavy burden, as longterm primary care givers. Related psychosocial morbidity, such as depression, divorce and unemployment, is prevalent. Children, unlike adults, tend to continue to develop physically and cognitively throughout their illness, and families expect flexible, responsive support at the location of the child, whether at home, school or hospital. Paediatric hospice admission usually occurs for planned respite care or for symptom management, at any time from diagnosis to death. The dual approach, combining palliation with disease modification, cuts across the conventional transition from active treatment to palliative care. It is clear then that paediatric palliative care differs considerably from its adult counterpart, and can be clinically challenging. We argue that it is the development of the subspecialty in the face of such challenges that has lead to the innovative practice from which adult palliative medicine can learn. Necessity is, indeed, ‘the mother of invention’. As children need home-based care, a close relationship with key professionals, and concurrent disease modification with palliation, this has led to the development of specialist nurses, who can provide care across all healthcare settings at any stage from diagnosis to death. For example, paediatric oncology outreach nurses, POONs, act as key workers providing active treatment, such as chemotherapy, within hospital and at home, as well as home-based palliative care at the end of life. There is evidence that, with such support, 80% of children can die in their preferred place, usually home.2 By contrast, adult specialist nursing care is relatively fragmented. Cancer site-specific nurses and respiratory nurse specialists, for example, have traditionally tended to work in one setting, focusing on early-stage disease and then handing over to palliative care colleagues. Adult specialist nursing teams could emulate the POON model with, for example, cancer site-specific specialist nurses working between hospital, hospice and home from diagnosis to death. Although advance care planning is increasingly promoted for adults, the speed with which medical crises develop, coupled with the role of parents in decisionmaking, has meant that, in the paediatric field, future care planning is particularly well developed and frequently integrated with emergency treatment planning. In the UK for example, the South Central Strategic Health Authority has developed a unified Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy, which includes a detailed future care plan for children and young people. Decisions about CPR are more easily discussed within the context of a wider future care planning discussion. In addition, formal symptom management plans (SMPs) are an increasingly established part of paediatric and young adult palliative care practice. A SMP summarises the clinical context and anticipated future problems, and then, for each symptom in turn, gives a detailed plan of current and potential treatment options. The plans are shared, usually electronically, with patients, families and the wider healthcare team, 450124 PMJ

Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper

Objectives To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. Methods Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. Results The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. Conclusions The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

BackgroundResearch suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC.MethodsThe priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public.ResultsSeveral grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants.ConclusionThis analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.

Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper

Background Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of ‘data’ which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this ‘data’ comes with specific ethical dilemmas. Methods This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. Results The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. Conclusions These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed.

Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study.

BackgroundThe ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest x-ray or not and to investigate any barriers to patient recruitment and participation. We integrated this within the feasibility trial to inform the design of any future definitive trial, particularly in view of the lack of research exploring symptomatic patients’ experiences of participating in diagnostic trials for possible/suspected lung cancer. Although previous studies contributed valuable information concerning screening for lung cancer and patient participation in trials, this paper is the first to explore issues relating to this specific patient group.MethodsQualitative interviews were conducted with 21 patients, comprising 9 who had been randomised to receive an immediate chest x-ray, 10 who were randomised to receive the standard treatment according to the National Institute for Health and Care Excellence guidelines, and 2 who chose not to participate in the trial. Interviews were analysed using a framework approach.ResultsThe findings of this analysis showed that altruism, personal benefit and the reassurance of not having lung cancer were important factors in patient participation. However, patients largely believed that being in the intervention arm was more beneficial, highlighting a lack of understanding of clinical equipoise. Disincentives to participation in the trial included the stigmatisation of patients who smoked (given the inclusion criteria). Although the majority of patients reported that they were happy with the trial design, there was evidence of poor understanding. Last, for several patients, placing trust in health professionals was preferred to understanding the trial processes.ConclusionsThe integration of a qualitative study focusing on participant experience as a secondary outcome of a feasibility trial enabled exploration of patient response to participation and recruitment. The study demonstrated that although it is feasible to recruit patients to the ELCID trial, more work needs to be done to ensure an understanding of study principles and also of smoking stigmatisation.Trial registrationClinicalTrials.gov, NCT01344005. Registered on 27 April 2011.