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Table 1 Ethical Principles and Themes

From: Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review

Ethical principles & themes Evidence of ethical considerations reported in studies (exemplars from text) Frequency (N = 25 studies)
Autonomy 24 (96%)
 Promoting desired level of involvement - shaping what each person was able and willing to contribute … according to his or her needs and wishes [38] 11 (44%)
- opportunity to make an informed, non-pressurized decision about whether they would like to be part [27]
 Addressing relational and intellectual power - group with the co-researchers was facilitated by a staff member, external to the project, as we were concerned that the co-researchers would otherwise avoid potential critical comments [26] 9 (36%)
- patients (patient-partners) … indicated they felt disadvantaged by their lack of understanding of the complex medical issue [44]
 Facilitating knowledge and understanding of research - (Patient-partners) received training and support to co-facilitate the focus groups … initial training provided a background to general research methods, specific training on focus group approaches and a discussion on the focus group question schedule [28] 9 (36%)
- Preparation sessions were held with the co-researchers to orientate them to the study, engage their views about the interview content and structure, and enable them to practice interviewing skills [36]
 Ensuring intentional engagement - Researchers need to be reflective and transparent about the desired outcomes of their projects and the role of the co-researchers in reaching those outcomes, but also acknowledge … the possibility that initial plans may change [26] 7 (28%)
- Ensuring that users with dementia are not misled about the nature of their role in the research process [27]
 Guarding against disclosing health and other personal information - Disclosure of own health cognitive status in an effort to connect with interviewees – publicly affirming their dementia [37] 7 (28%)
- People’s financial situation is a potentially personal and sensitive issue [26]
 Recognizing and responding to diminishing and impaired autonomy - cognitive and communication difficulties associated with dementia would have precluded some persons with dementia from taking part, especially those with late-stage dementia [40] 6 (24%)
- For both co-researchers and participants, we adopted a process model of consent, monitoring and reviewing consent within the context of the research relationship and across the duration of the project [36]
Non-maleficence 20 (80%)
 Protecting from financial burden - … making it cost-free for people to participate, but also considering people’s individual situation [26] 11 (40%)
- Assistance with travel arrangements was offered, including for an accompanying person for older adults [40]
 Protecting from physical suffering - Through a shared code between the co-researcher and the experienced researcher (such as the raising of a hand), the co-researcher could indicate when they were fatigued or felt unable to continue with moderating the discussion [29] 11 (40%)
- meetings should be carefully planned with reference to degree of physical frailty and/or anticipated fluctuations in physical status of co-researchers [39]
 Protecting from emotional suffering - For some, this direct contact with professionals proved a challenge, perhaps in terms of hearing negative information about one’s own cancer type and potential prognosis, or in the understandable personal emphasis placed on what is discussed in meetings with professionals [23] 7 (28%)
- emotional cost could be ongoing in terms of revisiting personal experiences through the studies engaged with and then more acutely with a reoccurrence. When this happened individuals often had to withdraw …, as happened for two participants [25]
 Guarding against causing offence - (patient-partners) were sometimes referred to as professional users or the usual suspects. Having responded to the request to become involved, there was some confusion and annoyance at the use of these divisive terms … being undervalued left some service users feeling undermined and used [23] 2 (8%)
Beneficence 14 (56%)
 Creating conditions for putting things right for others - “I am more than willing to put effort into a project if it may benefit my daughter and future generations” [43] 7 (28%)
- to change things for the better, to be part of shaping new, and more appropriate treatment for others going through a similar experience [23]
 Showing value-added - Need to demonstrate the value-added nature of its (patient partnership) impact on research processes and outcomes [24] 7 (28%)
- creation of a feedback loop allowed the patient advisors to understand that their work has meaning and their voices mattered [34]
 Providing support - one (patient) was admitted to hospital towards the end of the data collection period and later died … a bereavement visit (was conducted) after death by clinician involved in the project [39] 6 (24%)
- Participants could be open about their difficulties as the (patient-partner) interviewer was seen as someone who understood and shared their problems [36]
 Nurturing opportunities for supplementary benefits - Being involved has been restorative; it’s given people a role, a job, and a community of interest [37] 5 (20%)
- providing benefits for the person with dementia including opportunity to exercise skills and abilities [27]
Justice 20 (80%)
 Seeking diverse representation - diverse backgrounds in terms of gender, ethnicity, tumour site and their connection to cancer (patients, carers and others with specific interest in cancer research) [30] 16 (64%)
- better educated or already engaged in other community efforts, which likely influence their experience and biases [34]
 Ensuring mutual respect for contributions - respect, reciprocity, and mutual benefit, the essence of collaboration is a vested interest and gain for both parties [43] 12 (48%)
- There was a perception that participants, and their groups, were peripheral to core activities and priorities [23]
 Distributing risks and benefits - Same volunteers across multiple projects … may overburden some [22] 4 (16%)
- Overutilization of willing partners in other studies [38]