A continuous juggle of invisible forces: How fatigued dialysis patients manage daily life.

Dialysis patients commonly experience severe fatigue. Fatigue is known as an intrusive symptom strongly affecting perceived quality of life. A total of 23 interviews were conducted to explore how dialysis patients respond to fatigue symptoms and its consequences in daily life. A constructivist grounded theory approach guided data analysis and conceptualization of findings. Patients find themselves within a continuous decision loop, considering ones (physical) abilities and questioning ones normative beliefs and values. This inner process interacts with the outside world, and contains various ambiguities. Improved understanding of this demanding process could help to better address fatigue and positively contribute to the quality of life of dialysis patients.

Patients' and practice nurses' perceptions of depression in patients with type 2 diabetes and/or coronary heart disease screened for subthreshold depression.

BACKGROUND: Comorbid depression is common in patients with type 2 diabetes (DM2) and/or coronary heart disease (CHD) and is associated with poor quality of life and adverse health outcomes. However, little is known about patients' and practice nurses' (PNs) perceptions of depression. Tailoring care to these perceptions may affect depression detection and patient engagement with treatment and prevention programs. This study aimed to explore patients' and PNs' perceptions of depression in patients with DM2/CHD screened for subthreshold depression. METHODS: A qualitative study was conducted as part of a Dutch stepped-care prevention project. Using a purposive sampling strategy, data were collected through semi-structured interviews with 15 patients and 9 PNs. After consent, all interviews were recorded, transcribed verbatim and analyzed independently by two researchers with Atlas.ti.5.7.1 software. The patient and PN datasets were inspected for commonalities using a constant comparative method, from which a final thematic framework was generated. RESULTS: Main themes were: illness perception, need for care and causes of depression. Patients generally considered themselves at least mildly depressed, but perceived severity levels were not always congruent with Patient Health Questionnaire 9 scores at inclusion. Initially recognizing or naming their mental state as a (subthreshold) depression was difficult for some. Having trouble sleeping was frequently experienced as the most burdensome symptom. Most experienced a need for care; psycho-educational advice and talking therapy were preferred. Perceived symptom severity corresponded with perceived need for care, but did not necessarily match help-seeking behaviour. Main named barriers to help-seeking were experienced stigma and lack of awareness of depression and mental health care possibilities. PNs frequently perceived patients as not depressed and with minimal need for specific care except for attention. Participants pointed to a mix of causes of depression, most related to negative life events and circumstances and perceived indirect links with DM2/CHD. CONCLUSION: Data of the interviewed patients and PNs suggest that they have different perceptions about (subthreshold) depressive illness and the need for care, although views on its causes seem to overlap more.

Living with end-stage renal disease: Moral responsibilities of patients.

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.

Process evaluation of a stepped-care program to prevent depression in primary care: patients' and practice nurses' experiences.

BACKGROUND: Depression is common in patients with diabetes type 2 (DM2) and/or coronary heart disease (CHD), with high personal and societal burden and may even be preventable. Recently, a cluster randomized trial of stepped care to prevent depression among patients with DM2 and/or CHD and subthreshold depression in Dutch primary care (Step-Dep) versus usual care showed no effectiveness. This paper presents its process evaluation, exploring in-depth experiences from a patient and practice nurse perspective to further understand the results. METHODS: A qualitative study was conducted. Using a purposive sampling strategy, data were collected through semi-structured interviews with 24 participants (15 patients and nine practice nurses). All interviews were audiotaped and transcribed verbatim. Atlas.ti 5.7.1 software was used for coding and structuring of themes. A thematic analysis of the data was performed. RESULTS: The process evaluation showed, even through a negative trial, that Step-Dep was perceived as valuable by both patients and practice nurses; perceived effectiveness on improving depressive symptoms varied greatly, but most felt that it had been beneficial for patients' well-being. Facilitators were: increased awareness of mental health problems in chronic disease management and improved accessibility and decreased experienced stigma of receiving mental health care. The Patient Health Questionnaire 9 (PHQ-9), used to determine depression severity, functioned as a useful starting point for the conversation on mental health and patients gained more insight into their mental health by regularly filling out the PHQ-9. However, patients and practice nurses did not widely support its use for monitoring depressive symptoms or making treatment decisions. Monitoring mental health was deemed important in chronically ill patients by both patients and practice nurses and was suggested to start at the time of diagnosis of a chronic disease. Appointed barriers were that patients were primarily motivated to participate in scientific research rather than their intrinsic need to improve depressive symptoms. Additionally, various practice nurses preferred offering individually based therapy over pre-determined interventions in a protocolled sequence and somatic practice nurses expressed a lack of competence to recognise and treat mental health problems. CONCLUSION: This study demonstrates both the benefits and unique demands of programs such as Step-Dep. The appointed facilitators and barriers could guide the development of future studies aiming to prevent depression in similar patient groups.

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

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.

It's not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy.

PURPOSE: Little is known about the illness experiences of people with Facioscapulohumeral Muscular Dystrophy (FSHD). The aim of this study was to provide insight into the illness experiences of people with FSHD in order to tailor rehabilitation programs to individual needs and expectations. METHODS: Twenty-five semi-structured interviews were conducted with people with FSHD. The interviews were audiotaped, transcribed and member checked. Computerized (MAXqda) and manual techniques were used for thematic data analysis. RESULTS: Intra- as well as extra-individual aspects play a role in the illness experiences of people with FSHD. Integrating the consequences of the diagnosis and symptoms, coping with heredity and progenity, adjusting to a decreasing independence, and the accompanying changing relationship with one's partner, are mentioned as intra-individual aspects. As extra-individual factors are the responses of the social environment, which was mentioned as well as used assistive devices, and maintaining or giving up work. CONCLUSIONS: Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective. Implications for Rehabilitation FSHD has a major impact on people's lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals. Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively. It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication.

Protocol of a mixed method, randomized controlled study to assess the efficacy of a psychosocial intervention to reduce fatigue in patients with End-Stage Renal Disease (ESRD).

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.

Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy.

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.

Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals.

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.

[People with learning disabilities: an overview of the facts]. / Mensen met een verstandelijke beperking: de feiten op een rij.

This article gives a short overview of some basic facts about people with learning disabilities. The prevalence (1-3% worldwide) and stability of the incidence are described, as well as the causes and possible medical comorbidities.- People with learning disabilities are at significantly greater risk of developing cognitive and medical problems compared with the average population. Lastly, an overview of actual chronic care costs is given, as well as actual participation possibilities for people with learning disabilities.

Quality-of-life of patients with Parkinson's disease.

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.

Sweet and sour after renal transplantation: a qualitative study about the positive and negative consequences of renal transplantation.

OBJECTIVES: This qualitative study investigated the renal patients' experience of positive and negative consequences of transplantation, as well as the strategies they use to adapt to the transplantation. DESIGN AND METHODS: A qualitative design (30 participants in total), using individual interviews (18 participants) and two focus groups (12 participants in total), was used. RESULTS: The results showed that patients experienced a wide range of positive and negative emotions, in particular, guilt, gratefulness, and fear, partly as a result of their normative persuasions. Normative persuasions may transform inherent positive emotions into negative emotions and subsequent maladaptive behaviour. Not only physical limitations but also physical improvements were found to be related to the experience of negative emotions. Finally, the results indicated that patients mainly used adaptive coping strategies to adjust to life after transplantation, such as looking for opportunities, setting different priorities, making own choices, trying to maintain control, taking good care of oneself, and appreciating other things in life. CONCLUSIONS: This study offers several new insights regarding the range of experiences of renal patients after transplantation. Health professionals are invited to pay more attention to the full range of positive and negative experiences following transplantation, including the existence of normative persuasions. Health professionals may assist renal patients by helping them to recognize and acknowledge both positive and negative emotions and to encourage the use of more beneficial coping strategies. STATEMENT OF CONTRIBUTION: What is already known on this subject? The quality of life (QoL) of renal patients significantly improves after transplantation but the post-transplant QoL is lower compared with the QoL in healthy populations. Patients on dialysis and those who have received a donor kidney tend to use mainly emotion-focused coping strategies. What does this study add? This study offers several new insights regarding experiences of renal patients after transplantation: Patients experience a range of positive and negative emotions like guilt, gratefulness, and fear. Emotions are partly a result of normative persuasions. Persuasions may transform positive emotions into negative emotions and maladaptive behaviour. Physical limitations and improvements can due to the persuasions lead to negative emotions. Patients mainly use adaptive coping strategies.

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

BACKGROUND: Offspring 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. METHODS: Qualitative 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. RESULTS: Parental 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. CONCLUSIONS: This 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.

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

BACKGROUND: Limited 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. METHODS: We 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. RESULTS: Most 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. CONCLUSION: Expected 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.

Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team.

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.

Participation of people with acquired brain injury: Insiders perspectives.

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.

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.

Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease.

BACKGROUND: The value of incorporating patients' perspectives in health care is being acknowledged more and more because such incorporation may improve quality of health care. However, research priorities are mostly driven by professionals. In this study, renal patients were engaged to list priorities for social scientific research in order to complement the professionals' research agenda on kidney diseases. METHODS: A qualitative methodology was conducted by a team consisting of researchers and renal patients. Individual and group interviews were held in order to develop a social scientific research agenda from the perspective of patients on dialysis or with a history of dialysis. Subsequently, some current medical literature was scanned to explore whether or not the top priorities in this social science agenda were indeed under investigation by scientists in the field of health research. RESULTS: Respondents prioritized 17 research themes. Three top priorities included research on coping, family life and mastery in the face of demanding treatment. As patients have to adapt themselves permanently to the unpredictability of their disease and different stressors, research on coping receives high priority. The patients' illness affects the family as well and patients therefore indicate that research should focus on their relatives and the family as a social system. Patients often feel their lives are run by the requirements of the medical system. Strategies that help patients to remain independent and keep control over their own life are therefore considered as highly important research topics. CONCLUSIONS: Renal patients' social scientific research agenda can be used together with biomedical research agendas, in order to match research with the context and needs of patients. Social scientific research topics should be studied from a holistic perspective as having a disease and living a life are interrelated. This requires intense collaboration between biomedical and social scientific researchers.