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Table 2 Research participation according to type of research

From: Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

Study details Type of research Objectives Study design Assessment: *D,H, A Setting Participants Method of evaluation Main outcome
Research in general
[16] To define the research that is conducted in hospices across the US, assess perceptions of the obstacles to research, and define their views about the types of that would be important to them Nationwide telephone survey A Hospice Organisations Prospective Hospice staff willing to support research on: Pain management, and referral to hospice
[21] To describe the experiences in establishing a designated social work research unit in a major academic cancer research institution Social work research unit in academic cancer hospital D Hospital Researchers/clinicians Retrospective Researchers and clinicians developed appreciation for each other’s work and limitations, in turn facilitating teamwork
[22] Evaluation of data registry of patients willing to participate in psychosocial cancer research Participation involved completing a standard data set of psychosocial measures and agreeing to future follow-up contacts and data collection at three months and at 12 months post-enrollment D Hospital Cancer patients at diagnosis Retrospective The majority of newly diagnosed patients approached for consent (68%) and their primary family caregiver (92%) were willing to participate in the registry; of these, 80% also agreed to be contacted in the future for additional studies. Face-to-face interview was the preferred method of data collection. The majority (about 70%) of newly diagnosed adults with cancer participated in a data registry
[15] To examine hospice staff attitudes, beliefs, values about research with their patients, and family Cross-sectional, anonymous survey A Hospice Staff Prospective Staff were largely supportive of research with patients and families (mean agreement of 4.08-4.44). They acknowledged a mixture of being protective (52% wanted to approach the patients) and not having enough time for research (59% had no time or were willing to spend no more than 10 minutes on research)
[18] To explore hypothetical interest in research participation amongst hospice patients and carers, compared to ambulatory senior citizens Cross-sectional survey to explore interest in survey and therapeutic research H Hospice Patients and carers. Diagnosis not specified Compared with senior ambulatory citizens Prospective Hospice patients and carers were interested: 46% and 60% respectively) and in therapeutic research (45% and 57% respectively). Younger hospice patients were more likely to be interested than older people. No difference was found in older hospice and non-hospice patients
Research using surveys, interviews, observational and participatory methods
[23] To investigate the potential of causing distress with interview-based research Patients participated in a one-hour interview in relation to their medical care. They provided feedback regarding the interview itself D Home Patients with terminal cancer Retrospective add-on Participation can be a positive, therapeutic experience
[24] To reflect retrospectively on the ethical aspects of a study on patients with malignant cerebral glioma, and the effect of research on management Experience of qualitative structured interviews with cancer patients D Hospital Patients with advanced cancer Retrospective add-on 63% gained comfort from being interviewed. 5% did not like the experience. There was a 95% follow up rate of the interviews. Feasible to interview patients/carers separately
[25] To describe issues and dilemmas related to nonparticipation, attrition, and the need for assistance in research with vulnerable home hospice participants Mixed methods study with home hospice patients with mixed diagnoses. Retrospective analysis, with descriptive statistics of the frequency of issues and dilemmas that occurred in a research study with a vulnerable population D Hospice Patients, diagnosis not specified Retrospective From 113 potential participants, 16 (14.1%) people who gave initial consent were unable to participate or were lost to the study (subset I) for reasons: unable to give informed consent, cognitive disturbance, and physical distress. Of the 97 participants who completed testing, 28 (28.8%) required assistance (subset II) because of physical impairments. Those who completed testing expressed gratitude at being able to contribute information that they believed would benefit others.
[26] Interviews and interviewed again two to six months later. Carers were interviewed separately Interviews terminally ill patients and carers about death, dying and bereavement: stressful and/or helpful D Hospital Patients with advanced illness (not specified) and carers Retrospective add-on 87% of approached patients and 97% of carers were interviewed. Patients’ distress: 1.9% reported a great deal, 7.1% some, and 88% little or no stress from the interview. Carers’ distress: 1.5% reported a great deal, 8.4% some, 89% little or no stress. Slightly more stress at re-interview. Patients finding interview helpful: 16% very, 29% somewhat, 49% little or not. Carers finding interview helpful: 19% very, 34 somewhat, 44% little or not. The second interview was seen as slightlyless helpful. People with pain, more personal meaning in dying and less at ease with talking about dying reported more stress. Patients from ethnic minorities, anxious about EoL, spiritual, serene found interview helpful
[27] To explore patients’ and carers’ preferences and expectations regarding their contribution to research in palliative care Qualitative interviews were conducted in the context of two studies on the experiences of care by patients and carers D Hospital and community Patients and carers with cancer, COPD, heart failure and MND Retrospective add-on Differential patterns in decline and acceptance of interviews by patients with different conditions and across settings were found. Among cancer patients, 21/51 declined; the People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome
[28] To understand key challenges in researching EoL issues and identify ways of overcoming these Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer D Hospice and community An international sample of 32 researchers; seven patients with experience of cancer; and four carers Prospective People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome
[29] To assess the burden and benefits of participation in psychosocial research addressing EoL issues among patients receiving inpatient palliative care Psychosocial Interview + Selfreport QNN. D Hospital Patients with terminal cancer Retrospective add-on For 75% no burden, 68% moderately to highly beneficial. Most distressing: discuss death
[30] To compare consenting advanced cancer patient participants and refusers in observational EoL research Reasons for refusal to an observational study were recorded verbatim and coded using qualitative techniques D Not specified Patients with advanced cancer Retrospective add-on Consenters believed that they had more to gain from participation. Consenters felt that aches or pain were more a problem
[20] To explore the views and preferences of patients with advanced cancer on taking part in planned longitudinal questionnaire-based research studies Semi-structured interviews in a study with cross-sectional design H Hospital Patients with advanced cancer Prospective Preferred health professional known to them to contact them about study. Face-to face interviews were preferred. Flexibility in planning interviews is important. Patients preferred to be interviewed at home but were prepared to take part in hospital. Fluctuating symptom control needs may affect ability and willingness
[31] To determine whether caregivers believe that interviews about EoL care are distressing and identify patient and respondent characteristics associated with an increased risk of distress Four studies approaching families interviews Study 1: mailed survey Study 2,3,4: telephone survey D Hospice Carers of patients with different diagnoses in advance d illness Retrospective add-on Minority reported distress, which was mild or moderate Higher risk: younger, cancer, women
[19] To investigate whether the concerns researchers have about including terminally ill patients in research were shared by a sample of terminally ill patients A descriptive qualitative analysis of the views of hospice patients on the problems of carrying out research with dying patients H Hospice Terminally ill patients Prospective All the patients wanted to participate in research. Patients advanced one or more of several reasons for participation, the commonest being altruism, enhancement of a sense of personal value, the assertion of persisting autonomy and the value they placed on a commitment by doctors to optimising care by research. They rejected the view that their consent might be non-autonomous and put forward consistent views about what they considered relevant to consent
[32] Experience of working with co-researchers to collect data from two hospices The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. A total of 17 focus groups were held. D Hospice Patients as coresearchers Retrospective No-one was distressed Worried to ask inappropriate questions. Role researcher-participant blurred. Not possible to involvement in complete process.
[33] To illustrate the use of qualitative methods in thanatology Descriptive study of naturalistic enquiry. D Hospice Patients with advanced illness and researcher Retrospective They assess risk and benefits: patients experiencing pain from discussing sensitive issues. Patients can sometimes open up more easily to researchers than health professionals. Researcher experienced difficulties with access to patients. The researcher reflects on the impact of this research on herself, recognising sadness but also meaningfulness
Trial research
[34] To investigate the impact of a three-year RCT of different models of service provision on staff A qualitative substudy to a large three-year RCT of different models of service provision on staff D Hospice Palliative care staff Prospective Initially the impact of the trial produced high levels of staff stress, diminishing largely over time, to be replaced by enthusiasm for the changes achieved and sadness that on trial completion the perceived benefits gained would be lost
[17] To determine if patients with advanced cancer are interested in participation in research that does not involve anti-cancer therapy, particularly in the context of a RCT, and if so, what factors are important in their decisions. What level of inconvenience is tolerable and by which factors is willingness to participate influenced? Self-administered questionnaires H Hospital Patients with advanced cancer and relatives Prospective Patients with advanced cancer are interested in participating in RCTs focusing on symptom control. Relatives are supportive of participation. Over 75% expressed altruistic views. Many were prepared to complete short questionnaires, accept extra medications, investigations, hospital visits or admissions within a trial context. Deterrants: concepts of ‘randomisation’, ‘placebo-control’ and ‘blinding’, and the possibility of side effects. Patients’ age was the only significant predictor of willingness to participate
  1. *Direct (D).
  2. Hypothetical (H).
  3. Attitudes (A).