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A qualitative study was done on patients' perspectives on the first phases of imagery work in the context of schema therapy (ST) for personality disorders. Patients participated in a multi-center randomized controlled study of the effectiveness of ST. Patients' experiences and opinions were collected with semistructured in-depth interviews at the time when they were still in the early phases of treatment. The interviews were analyzed using a thematic analysis. For validation, a so-called member check was completed, in which participants could indicate whether they agreed or could correct the transcripts and the conclusions we drew from their interviews. We concentrated on the first imagery techniques that are used as preparation for imagery rescripting; that is, diagnostic imagery and imagery of a safe place. We compared the experiences reported by the patients with Young, Klosko, and Weishaar's (2003) ST manual. The results show that early imagery techniques in ST are considered a valuable method. However, patients emphasize that more attention should be paid to the emotional impact of this specific technique. They report lacking information, communication, and support during the initial phases of imagery work. Furthermore, patients mention that the duration of the imagery exercises is unpredictable; this creates feelings of uncertainty and fear. These results give essential information for protocol adjustments for the use of early imagery techniques and for the implementation of ST. (Contains 3 tables.)

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 RehabilitationFatigue 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. [ABSTRACT FROM PUBLISHER]

Background: Patients with end-stage renal disease (ESRD) commonly suffer from severe fatigue, which strongly impacts their quality of life (QoL). Although fatigue is often attributed to disease- and treatment characteristics, research also shows that behavioural, psychological and social factors affect perceived fatigue in dialysis patients. Whereas studies on fatigue in other chronic patient groups suggest that psychological or psychosocial interventions are effective in reducing fatigue, such interventions are not yet available for ESRD patients on dialysis treatment. The objective of this study is to examine the efficacy of a psychosocial intervention for dialysis patients aimed at reducing fatigue (primary outcome) and improving QoL (secondary outcome). The intervention consists of counselling sessions led by a social worker. The implementation process and patients' and social workers' expectations and experiences with the intervention will also be evaluated.Methods/design: This study follows a mixed-methods design in which both quantitative and qualitative data will be collected. A multi-centre, randomised controlled trial (RCT) with repeated measures will be conducted to quantitatively assess the efficacy of the psychosocial intervention in reducing fatigue and improving QoL in ESRD patients. Additional secondary outcomes and medical parameters will be assessed. Outcomes will be compared to patients receiving usual care. A sample of 74 severely fatigued dialysis patients will be recruited from 10 dialysis centres. Patients will be randomly assigned to the intervention or control group. Outcomes will be assessed at baseline, post intervention/16 weeks, and at three and six-month follow-ups. A qualitative process evaluation will be conducted parallel to/following the effectiveness RCT. Interviews and focus groups will be conducted to gain insight into patients' and social workers' perspectives on outcomes and implementation procedures. Implementation fidelity will be assessed by audio-taped and written registrations. Participatory methods ensure the continuous input of experiential knowledge, improving the quality of study procedures and the applicability of outcomes.Discussion: This is the first mixed method study (including an RCT and qualitative process evaluation) to examine the effect and implementation process of a psychosocial intervention on reducing fatigue and improving QoL in ESRD patients on dialysis treatment.Trial Registration: NTR5366 , The Netherlands National Trial Register (NTR), registered August 26, 2015. [ABSTRACT FROM AUTHOR]

Background: Many persons affected with poliomyelitis develop post-polio syndrome (PPS) later in their life. Recently, the effectiveness of Exercise Therapy (ET) and Cognitive Behavioural Therapy (CBT) for PPS has been evaluated in a randomized controlled trial, but did not show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations. The aim of this explorative study was to gain insight in the perceived effects and experiences of the interventions from the perspectives of the patients and therapists.Methods: Qualitative data were collected through semi-structured interviews with 17 patients and 7 therapists. All participants were involved in the trial. A thematic analysis of the data was performed.Results: Some patients experienced a short term enhanced endurance and a better use of energy during the day. However, in general patients did not experience a long lasting reduction of fatigue from the CBT or ET. Mainly patients of the CBT, but also some patients of the ET described an increase of self-esteem and self-acceptance. As a result, patients were sometimes better able to perform physical activities during the day. In contrast to the CBT, the ET was in general perceived by the patients as an intensive therapy, which was difficult to fit into their daily routine. Therapists of both the CBT and the ET struggled with a low intrinsic motivation of the patients in the study. This made it sometimes difficult for the therapists to follow the protocol.Conclusion: Confirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with feasible interventions; they should fit the patients' needs on a practical (fit into their daily routine) and mental (fit their need for support) level. [ABSTRACT FROM AUTHOR]

The article focuses on the involvement of patient in research programming and implementation. Topics mentioned include the public health management, the importance of patient participation, and the partnership between patients and physicians for medical care management. Also mentioned are the social aspects of pharmaceutical industry and the medical research funding management.

The article focuses on the application of care-ethics approach on clients involvement on long-term care. Topics include the illustration of approach and its implementation through evaluating a case of user involvement in a long-term elderly care, the results which revealed the clients' concern on meal experiences and the development of clients and professional relations, and the findings which conclude the significant of care-ethics approach in empowering clients involvement in long-term care.

Our objective was to explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers, and health care professionals in the context of multidisciplinary ALS care. We undertook semi-structured interviews with 10 patients with ALS, their caregivers ( n = 10) and their ALS health care professionals ( n = 10), and held a focus group ( n = 20). We transcribed the audio-taped interviews and analysed all data thematically. Participants indicated that in certain circumstances case management can have an added value. They identified factors for receptiveness to case management: adequacy of usual care, rate of disease progression, and degree of social network support and personal factors of patients and spousal caregivers. Participants valued the time for consultation, house calls and proactive approach of the case manager. Patients with ALS and caregivers appreciated emotional support, whereas professionals did not mention the importance of emotional support by the case manager. In conclusion, ALS teams can consider implementation of valued aspects of case management (accessibility, ample time, proactive approach, emotional support) in the usual multidisciplinary ALS care. Additional support might be provided to patients with rapidly progressive disease course, passive coping style and small social network. [ABSTRACT FROM AUTHOR]

Patients are increasingly involved in agenda setting in health research policy, but little is known about whether or not patients’ topics are translated into a funding programme and taken up by researchers. A qualitative evaluation of nine multi-stakeholder agenda-setting projects in the Netherlands was conducted. Document study and 54 semi-structured interviews with stakeholders were undertaken. Three strategies for the translation of research agendas into research programmes were identified: first, one-on-one translation; second, agendas were used to adapt general policies; and third, no translation. A number of factors, facilitating or impeding this translation, were identified, relating to the context or the process of programming and implementation. Context appeared to be crucial: positive attitudes towards patient involvement, good relations between stakeholders and supportive characteristics of organizations. Patient involvement was rarely sustained during programming and implementation. These insights contribute to more effective procedures for programming and implementing research agendas. [ABSTRACT FROM PUBLISHER]

Primary objective: To describe factors influencing the QoL of patients with Parkinson's Disease (PD), as experienced by patients themselves. Research design: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives. Methods and procedures: Interviews with patients ( n = 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV). Main outcomes and results: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person's life differs per patient and per situation. Conclusions: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD. [ABSTRACT FROM AUTHOR]

Background Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social-scientific agenda for health research from the perspectives of patients with a chronic kidney disease (CKD). Objective To examine the dynamics and dialogues in a collaboration between patient research partners and professional researchers. Design A responsive methodology was used in the research project. Two patient research partners participated in the research team. Twenty-seven patients with CKD and parents of young children with CKD were interviewed, seven focus groups were organized and observations were held at a dialysis centre. Results During the collaboration, the research partners and professional researchers engaged in a mutual learning process in all stages of the project. The professional researchers gave the research partners a sense of ownership in the research process. The research partners could relate to the lives of patients by using their experiential knowledge. In the context of collaborative working, this helped shape an agenda for research. Conclusion and discussion The active involvement of patients as research partners can add value to a research strategy, especially when research partners and professional researchers engage in a dialogue that is open, inclusive and deliberative. Issues for discussion include the possibility of 'over-involvement', the research profile and training of research partners and whether participation of patients is restricted to certain types of research. [ABSTRACT FROM AUTHOR]

sitvast j.e., abma t.a. & widdershoven g.a.m. (2011) Living with severe mental illness: perception of sickness. Journal of Advanced Nursing 67(9), 2170-2179. Abstract Aim. This article is a report of a study on how participation in photo groups influenced the perception of the impact of sickness on daily life. Background. Living with severe mental illness can have a strong impact on daily life and the experience of self. In combination with self-stigmatization, this can lead to a sense of being no more than a patient. Method. A mixed-methods design was used to measure the perception of sickness impact. Consumers of psychiatric services participated in photography groups that aimed at integration of illness and developing new goals in life. These groups were conducted by nurses and data were collected between the years 2005 and 2009. The Sickness Impact Profile (SIP) questionnaires were completed by the respondents before and after intervention. The SIP was used to differentiate between respondents who perceived less impact of illness on their daily lives after following a photogroup and those who did not perceive so or remained the same. A sample of these three groups was used to complement the quantitative findings with in-depth interviews with consumers and mentor nurses. Results. Findings indicated absence of important changes in the sickness impact scores except in the domain of mobility. Consumers did, however, show signs of progress in terms of increasing openness, understanding of their feelings and situation and abilities to cope with them. Conclusion. Participating in photo groups can help patients get along with their life and make it more bearable. No signs of demoralization and self-stigmatization were found. [ABSTRACT FROM AUTHOR]

Objective To analyse the results of an action research process, the aim of which is to involve patients in fundamental psychiatric genomics research, against theoretical backgrounds that formulate a Dialogue Model for patient involvement. Background Mixed views continue to exist about the value, appropriateness and potential of involving consumers and patients in basic medical research. There is a need to learn from practical examples. Design An action research process was set up to facilitate and stimulate the involvement of a Dutch patient organization and a family organization in a psychiatric research consortium. Findings The premises and procedures of the Dialogue Model constitute good guidelines for involvement in fundamental research. However, the normative core features for patient involvement underlying the model prove problematic due to: (i) properties of complex psychiatric genomics research; (ii) the entanglement of subjectivity and basic psychiatric science; (iii) universal notions of citizenship and difficulties of delineating the patient in psychiatric genomics research. Conclusion Interaction and dialogue among scientists, patients and family members are possible in fundamental genomics research. The best approach for involvement would seem to be based on the creation of common ground and an evolving dialogue, which the guidelines of the Dialogue Model can provide. The challenge here will be to create also a dialogue on the normative anchor points of the dialogue process and to identify and monitor power relations inherent in these (tangible) dialogues. [ABSTRACT FROM AUTHOR]

Aims and objectives: To investigate experiences of residents, their family caregivers and nursing staff in group living homes for older people with dementia and their perception of the care process. Background: Traditional nursing homes for people with dementia have several shortcomings related to depersonalisation, passivity, loss of skills and use of physical restraints. Group living homes are seen as an alternative to regular nursing homes, but experiences with this new care setting have rarely been investigated. Design: The study followed a naturalistic design. Qualitative data were collected over a period of 6 months in two group living homes located in the southern part of the Netherlands. Methods: Systematic participatory observations were carried out during daily life, care and activities in both homes. In addition, semi-structured interviews were held with residents, their family and nursing staff. These data were inductively analysed and related to Tronto's care ethical framework. Results: According to all parties, group living homes create structural opportunities for individualised care and attention to the residents' personal needs. The increased attentiveness and responsiveness for residents' well-being was seen as a sign of good care and fits with the phases of caring about and receiving care of Tronto's care ethical model. However, tensions occurred relating to the phases of taking responsibility and carrying out care. Not all residents and family members want or are able to take responsibility and perform self-care. Conclusions: Group living homes create conditions for good care and stimulate attentiveness and responsiveness. Tensions in these homes may relate to the new division of responsibilities and tasks. Relevance to clinical practice: Values of attention to needs and responsiveness are of high importance for nursing staff to provide good care for people with dementia in a nursing home setting. [ABSTRACT FROM AUTHOR]

Introduction: Participation is important in rehabilitation of people with acquired brain injury (ABI). Studies have shown that their participation is problematic. It is, however, unknown how they experience their participation and what influences their participation. This study aims to answer the question how people with ABI experience participation and which environmental and personal factors may influence participation, as perceived by people with ABI. Methods: A qualitative methodology was conducted by a team consisting of researchers, people with ABI and a mother of a daughter with ABI. Interviews and focus groups were held and followed by a working group in order to develop actions for improvement. Results and conclusion: People with ABI contend that it is not the degree of participation that matters, but the quality of participation. They describe meaningful participation in terms of taking part, giving something and being someone. A model was constructed based on the experiences, which includes personal and environmental factors that, in interaction, may influence participation: participation is influenced by the process of recovery, support and treatment, the environment and society and communication and interaction. The study resulted in an overview of actions like continual care that may improve the participation of people with ABI. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Patients are increasingly actively involved in research. We depart from an approach that understands patient participation as dialogue. This idea is grounded in hermeneutic philosophy and responsive research. Patients are engaged in research via dialogues with other stakeholders. New is the inclusion of patients as research partners. Several methodological notions underpin responsive research. In two health research agenda-setting processes (intellectual disability and kidney disease), these notions have been applied and refined for collaboration with research partners in mixed research teams. The findings demonstrate that equal partnerships include involvement in all research activities from beginning to end, a focus on experiential knowledge, mutual learning, openness, and respect. Mutual learning processes help to overcome stereotypes and handle tensions. Other experiences include the financial reimbursement of research partners, and the necessity of an acceptable workload and scheme. The collaboration might then have a surplus value for the research process and for those involved. [ABSTRACT FROM AUTHOR]

Moral deliberation has been receiving more attention in nursing ethics. Several ethical conversation models have been developed. This article explores the feasibility of the so-called CARE (Considerations, Actions, Reasons, Experiences) model as a framework for moral deliberation in psychiatric nursing practice. This model was used in combination with narrative and dialogical approaches to foster discourse between various stakeholders about coercion in a closed admission clinic in a mental hospital in the Netherlands. The findings demonstrate that the CARE model provides a substantial framework for structuring moral deliberations. Narratives and dialogue are useful tools for broadening issues in conversations, to engage various stakeholders (including patients), and to gain shared understandings. [ABSTRACT FROM AUTHOR]

Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research. [ABSTRACT FROM AUTHOR]

The author presents a personal narrative of his experience of suffering from Polycystic kidney disease. INSETS: What can medical professionals do?;A DOCTOR’S PERSPECTIVE;Helping hands along the way.