Karen Schipper

What Does It Mean to Be a Patient Research Partner? An Ethnodrama

There is a trend in medical and health research to involve patients in the research process. A recent role is the patient acting as a research partner in a team of professionals. There are a few publications about these collaborations and the value of research partners. But is the research partner accepted as a credible knower? How can equality in the collaboration be reached? And how to handle tensions between the research partner’s personal agenda and the interests of and burdens on fellow patients? Finally there is the question of how the research influences the research partner’s self-perception. The purpose of this article is to investigate these epistemological, relational, ethical, and existential issues, while presenting an ethnodrama. In this drama, the personal narrative of the research partner, a person with a renal disease, unfolds in dialogue with her research mates, whose voices are also present in the text. The article is based on a health research agenda—setting process with the Kidney Association in the Netherlands.

Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes

BackgroundLimited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced.MethodsWe conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts.ResultsMost deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donor’s health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p = 0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced.ConclusionExpected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group.

Citizenship and autonomy in acquired brain injury

In ethical theory, different concepts of autonomy can be distinguished. In this article we explore how these concepts of autonomy are combined in theory in the citizenship paradigm, and how this turns out in the practice of care for people with acquired brain injury. The stories of a professional caregiver and a client with acquired brain injury show that the combination of various concepts of autonomy in practice leads to tensions between caregivers and clients. These dynamics are discussed from a care ethics perspective, stressing the importance of relationships and interdependence, as well as paying attention to various, sometimes conflicting, perspectives in a deliberative dialogue.

The power of difference in inclusive research

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography we reflect on these aspects and the challenges along the way. We conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks.

Parents’ perceptions on offspring risk and prevention of anxiety and depression: a qualitative study

BackgroundOffspring of patients with anxiety or depression are at high risk for developing anxiety or depression. Despite the positive findings regarding effectiveness of prevention programs, recruitment for prevention activities and trials is notoriously difficult. Our randomized controlled prevention trial was terminated due to lack of patient inclusion. Research on mentally-ill parents’ perceptions of offspring’s risk and need for preventive intervention may shed light on this issue, and may enhance family participation in prevention activities and trials.MethodsQualitative data were collected through semi-structured interviews with 24 parents (patients with anxiety or depression, or their partners). An inductive content analysis of the data was performed. Five research questions were investigated regarding parents’ perceptions of anxiety, depression, and offspring risk; anxiety, depression, and parenting; the need for offspring intervention and prevention; and barriers to and experiences with participation in preventive research.ResultsParental perceptions of the impact of parental anxiety and depression on offspring greatly differed. Parents articulated concerns about children’s symptomatology, however, most parents did not perceive a direct link between parent symptoms and offspring quality of life. They experienced an influence of parental symptoms on family quality of life, but chose not to discuss that with their children in order to protect them. Parents were not well aware of the possibilities regarding professional help for offspring and preferred parent-focused rather than offspring-focused interventions such as parent psycho-education. Important barriers to participation in preventive research included parental overburden, shame and stigma, and perceived lack of necessity for intervention.ConclusionsThis study highlights the importance of educating parents in adult health care. Providing psycho-education regarding offspring risk, communication in the family, and parenting in order to increase parental knowledge and parent–child communication, and decrease guilt and shame are important first steps in motivating parents to participate in preventive treatment.

Fatigue in facioscapulohumeral muscular dystrophy: a qualitative study of people’s experiences

Abstract Purpose: The aim of this article is to describe how fatigue affects the lives of people with facioscapulohumeral dystrophy (FSHD), how they experience fatigue, and how they deal with it in order to attune rehabilitation care to patients’ needs. Method: A qualitative study, consisting of 25 semistructured interviews with patients with FSHD and severe fatigue (as measured with the checklist individual strength (CIS) fatigue questionnaire), was conducted to gain insight into the experiences of patients with fatigue. Data were inductively analyzed. Results: Patients describe fatigue as an overwhelming and unpredictable experience and they make a distinction between actual experienced fatigue and fear of becoming tired. Fatigue can, according to patients, be the result of weak muscles, physical overachieving or underachieving and stress. But most of the time patients do not know the actual causes of the fatigue, which makes it hard to deal with. The experienced fatigue has a large impact on participation, social contacts, and the quality of life of patients, and patients try to use many strategies to adapt themselves to the constantly changing situations. Conclusions: Fatigue is a severe problem in FSHD and has a huge impact on patients’ lives. Patients should be helped to reduce fatigue, for instance by offering evidence-based therapies such as aerobic exercise training or cognitive behavioral therapy. Implications for Rehabilitation Fatigue has significant influence on the quality of lives and participation of people with FSHD. Patients with FSHD are insufficient supported in coping with their fatigue. More attention for fatigue in patients with FSHD in rehabilitation is needed, for instance by a broader implementation of aerobic exercise training or cognitive behavioral therapy.

Living with moderate to severe renal failure from the perspective of patients

BackgroundWithin healthcare, almost no attention is given to patients with moderate-to- severe chronic kidney disease, having a with GFR between 20 and 45 while the presumption exists that these patients already experience several problems in their lives during the course of their illness.MethodsA team of academic researchers and a renal patient participated in a qualitative study. Individual interviews (n = 31) and focus groups (10 participants in total) with patients having moderate-to-severe chronic kidney disease were conducted to gain insight into their everyday problems.ResultsParticipants mentioned several experiences that can be divided into physical, social, societal and psychological aspects as well as aspects related to healthcare. The most important findings, following under each of these categories are: 1) the experience of fatigue (physical aspects) 2) the search for acknowledgment of complaints/not enough attention given to complaints leading to overcompensation and secrecy (societal aspects) 3) work problems (societal aspects) and 4) the wish to control the disease but not receiving enough support for this (healthcare). Patients feel in general that healthcare professionals do not take them seriously in their complaints and problems.ConclusionsThis study offers important new insights into an expanding group of patients having moderate-to-severe chronic kidney disease. Healthcare professionals should acknowledge their problems instead of ignoring or rejecting them and they should support patients in finding a way to deal with them. The assumptions of Personalised Care Planning could be used to support patients.

Acquired brain injury

Linda Kat was 40 when surgery left her with acquired brain injury. She tells of her initial shock, her frustrations, and her need to make her own choices

The meaning of aphasia centres from the perspectives of people with aphasia and their relatives: understanding participation in the Dutch context

ABSTRACT Background: Aphasia can have major consequences for participation. In line with other initiatives around the world, in the Netherlands aphasia centres provide support to people with aphasia and their relatives in the chronic phase to bridge the gap between therapy, rehabilitation, and participation in daily life. Although there is greater focus on participation in health care, the concept of participation is complex and not well-defined. Aims: The purpose of this paper is to understand the value and meaning of the aphasia centres in the Dutch context. We focus on the emic perspectives of people with aphasia and their relatives: how do aphasia centres contribute to building up a meaningful life with aphasia in the chronic phase and how do the centres support them to participate? Hence, this study also contributes to the understanding of the concept of participation and its meaning. Methods and procedures: This qualitative study used a naturalistic case study design in order to get an rich and multi-layered understanding of the context of aphasia centres. Within this context we focused on the experiences and perspectives of people with aphasia and their relatives. To secure involvement of people with aphasia themselves, research methods were attuned to their abilities to participate, and included participant observations, interviews, focus group meetings, and creative methods. Outcomes and results: Aphasia centres help people with aphasia to overcome isolation. They bring new goals and perspectives and help people find new meaning in life. They are experienced as a safe place to learn, overcome shame, and build self-confidence. Working in groups is a valuable element, providing a mutual sense of belonging. Also, people experience they can have a meaningful contribution by helping others. Relatives underscore these values and also feel supported in building up their life with their partner. Conclusions: Aphasia centres are a first step to overcome isolation and bear a first step towards participation in itself. They contribute to overcome barriers to relate to others by building self-confidence and overcome shame. This is a big step stone towards participation in the context outside the centre. From the perspectives of clients and relatives, participation is linked to the concept of being and belonging. At the same time, clients feel it is hard to meet societal norms of participation, framed as paid work, independency and self-reliance. This makes it harder to overcome shame. In this societal context, aphasia centres become even more relevant.

Living with end-stage renal disease

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management.