From Surviving Cancer to Getting on With Life: Adult Testicular Germ Cell Tumor Survivors' Perspectives on Transition From Follow-Up Care to Long-Term Survivorship.

With an increasing incidence and a high cure rate, a growing number of testicular germ cell tumor (TGCT) survivors require specialized follow-up care. However, knowledge of these patients' needs is lacking, leaving TGCT survivors with unmet care needs at risk of symptom burden when transitioning to long-term survivorship. This grounded theory study aimed to understand the perspectives of TGCT survivors' transition from follow-up care to long-term survivorship. A total of 12 adult TGCT survivors in follow-up care or completion less than a year were in-depth semi-structured interviewed. Interviews were audiotaped and transcribed verbatim. Transcripts were analyzed by constant comparison, and the core category "Dealing with back-and-forth forces" emerged in the integrated concepts. Two comparative processes in dealing with those forces were identified: the process of Living beyond the sword of Damocles involved the transition from feeling threatened by cancer to overcoming those threats; the process of Getting on with one's life can be described as transitioning from a period where cancer overruled their lives to carrying on with everyday life. The processes toward long-term survivorship follow general characteristics; the transition itself is an individual journey that depends on (life) experiences. The constructed model can guide healthcare professionals and researchers involved in TGCT survivorship to understand TGCT survivors' individual and ensuing needs. When TGCT survivors receive individualized and tailored follow-up care, it can assist in preventing and reducing long-term and late effects on long-term survivorship.

Sexual health counselling by Dutch HIV care providers: A cross-sectional survey among physicians and nurses in the Netherlands.

To improve sexual health among people living with HIV, sexual health should be addressed during consultations in routine HIV care. The aim of the present study was to investigate to what extent Sexual Health Counselling (SHC) is incorporated into routine Dutch HIV care and to explore differences between physicians and nurses in their practices and views regarding SHC. A cross-sectional survey was conducted among all HIV physicians (N=110) and HIV nurses (N=82) in the Netherlands. A questionnaire assessed socio-demographic characteristics, current SHC practice, topics addressed, and factors associated with engaging in SHC. The response rate was 53.6% (N=59) among physicians and 60.0% (N=40) among nurses. SHC was performed by 26.1% of physicians and 83.9% of nurses (Χ² (1) = 27.68, p<.001). The most frequently reported barrier for SHC was the presence of a third party, endorsed by 50.9% of physicians and 60.4% of nurses. Nurses were more likely to address issues related to sexual wellbeing, while physicians mainly discussed medical topics. While, both HIV physicians and nursed felt responsible for providing SHC, nurses were more likely to address SHC that physicians. There is scope for improving SHC for PLHIV through a multidisciplinary approach based on clear guidelines for physicians and nurses.

Treatment decision-making and the added value of the general practitioner: A qualitative exploration of cancer patients' perspectives.

OBJECTIVE: Cancer patients are increasingly involved in decision-making for cancer treatment. General practitioners' (GPs) support in this process is advocated. Therefore, GPs need to be aware of patients' treatment decision-making process and their potential role. We aim to understand the treatment decision-making process and to explore the added value of GP involvement, from the perspective of cancer patients treated with curative intent. METHODS: An explorative qualitative study was performed. Semi-structured interviews were conducted with 20 purposively sampled Dutch cancer patients treated with curative intent. RESULTS: Patients' treatment decision-making process was dominated by a focus on 'safeguarding survival'. Patients generally followed the treatment plan as proposed by their physician and did not always experience having a treatment choice. The majority of patients expressed added value for GP involvement, mainly to provide psychological support, but also for providing shared decision-making (SDM) support. CONCLUSION: The treatment decision-making process of cancer patients treated with curative intent is dominated by the urge to 'safeguard survival'. GPs should be aware of their added value in providing psychological support and their potential role to support SDM following a cancer diagnosis.

Patients' perspectives on the COPD-GRIP intervention, a new nursing care intervention for COPD.

BACKGROUND: The nurse-led chronic obstructive pulmonary disease-Guidance Research on Illness Perception (COPD-GRIP) intervention was developed to incorporate illness perceptions into COPD care with the intention to improve the health-related quality of life of COPD patients. This individualized intervention focuses on identifying, discussing and evaluating illness perceptions and consists of three consultations with a practice nurse. The aim of this study is to explore patients' experiences regarding the COPD-GRIP intervention. METHODS: A qualitative interview study nested in a cluster randomized trial in primary care. One-time semi-structured individual interviews with COPD patients who were guided with the COPD-GRIP intervention were conducted. During data collection, the constant comparative approach was used. All interviews were recorded, transcribed, anonymized and uploaded to MAXQDA. To identify themes, the transcripts were independently coded by two researchers. RESULTS: Sixteen patients were interviewed. All patients were positive and experienced an additional value of the COPD-GRIP intervention in different areas. Three main themes were identified and show that taking part in this intervention made the patients feel 'listened to and acknowledged', improved their awareness of the disease and its management and helped them to make lifestyle changes. Some patients suggested that the individualized care plan could be improved and to start the intervention immediately after being informed of the COPD diagnosis. All patients recommended this intervention. CONCLUSION: The results of this study indicate that patients acknowledge that the COPD-GRIP intervention is a useful and promising tool for providing individualized COPD care.

Nurses' perceptions towards the delivery and feasibility of a behaviour change intervention to enhance physical activity in patients at risk for cardiovascular disease in primary care: a qualitative study.

BACKGROUND: Self-management support is widely accepted for the management of chronic conditions. Self-management often requires behaviour change in patients, in which primary care nurses play a pivotal role. To support patients in changing their behaviour, the structured behaviour change Activate intervention was developed. This intervention aims to enhance physical activity in patients at risk for cardiovascular disease in primary care as well as to enhance nurses' role in supporting these patients. This study aimed to evaluate nurses' perceptions towards the delivery and feasibility of the Activate intervention. METHODS: A qualitative study nested within a cluster-randomised controlled trial using semistructured interviews was conducted and thematically analysed. Fourteen nurses who delivered the Activate intervention participated. RESULTS: Three key themes emerged concerning nurses' perceptions of delivering the intervention: nurses' engagement towards delivering the intervention; acquiring knowledge and skills; and dealing with adherence to the consultation structure. Three key themes were identified concerning the feasibility of the intervention: expectations towards the use of the intervention in routine practice; perceptions towards the feasibility of the training programme; and enabling personal development. CONCLUSIONS: Delivering a behaviour change intervention is challenged by the complexity of changing nurses' consultation style, including acquiring corresponding knowledge and skills. The findings have increased the understanding of the effectiveness of the Activate trial and will guide the development and evaluation of future behaviour change interventions delivered by nurses in primary care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02725203 .

From intention to STI prevention: An online questionnaire on barriers and facilitators for discussing sexual risk behaviour among HIV nurses.

AIMS: We aimed to elucidate facilitators and barriers that HIV nurses experience in discussing sexual risk behaviour with HIV-positive men who have sex with men, using variables from a previous qualitative study and the theory of planned behaviour. BACKGROUND: HIV-positive men who have sex with men are frequently diagnosed with sexually transmitted infections, which can be reduced if HIV nurses discuss sexual risk behaviour. DESIGN: An online questionnaire was disseminated in April 2015 among all HIV nurses in the Netherlands. METHODS: We assessed variables, such as attitudes, shame, ability, knowledge and time concerns. A regression analysis was conducted with "intention to discuss sexual risk behaviour" as an outcome variable. RESULTS: The questionnaire was completed by 60 of 79 HIV nurses. Overall, participants reported high intentions to discuss sexual risk behaviour, and 38% of the variance was explained by attitude, sexual preference, knowing ways to introduce the topic and experiencing enough time or viewing it as a priority. In addition, high intenders significantly differed from low intenders in "experienced shame," "relation with patients," "non-verbal communication," "subjective norm" and "knowledge." CONCLUSION: Improving sexual health in HIV care translates into improving opportunities and the facilitating factors in initiating the discussion of sexual risk behaviour rather than removing barriers HIV nurses experience. Interventions should mainly focus on improving the HIV nurses' perceived ability to initiate the topic of sexual risk behaviour and to utilize the jargon and terminology that is commonly used among men who have sex with men.

Self-management support in patients with adrenal insufficiency.

OBJECTIVE: Patient education is an important intervention to prevent an adrenal crisis in patients with adrenal insufficiency. The objective of this study was to assess the knowledge of adjusting the dose of glucocorticoids in special circumstances in patients with adrenal insufficiency who had previously been educated on this topic. In patients with insufficient knowledge, we tried to identify the underlying causes and care needs. DESIGN: Quantitative and qualitative study. METHODS: Adult patients with chronic primary and secondary adrenal insufficiency who received glucocorticoid stress management education were invited to participate in a telephone interview in which we tested their knowledge using hypothetical situations of physical and mental stress. In respondents with insufficient knowledge, we conducted a qualitative semistructured interview to elicit the underlying reasons from patients' perspective for their lack of knowledge and determine their care needs. RESULTS: Forty-three of the 83 patients who previously received education had insufficient knowledge about how to act during stressful situations. We found a significant association between education level and level of knowledge after the educational consult. The following underlying factors were identified: unawareness of the seriousness of their condition, ineffective coping strategies, the lack of experience with self-management skills and misconceptions. The most important care needs were repetition of education, the use of guidelines, learning from experience and optimizing social support. CONCLUSION: One or two educational consults are not effective to achieve adequate self-management skills. There is a need for structural follow-up where education is repeated and practical implementation of this knowledge is tested in order to identify the potential inadequate action.

Communication Between HIV Patients and Their Providers: A Qualitative Preference Match Analysis.

Since the introduction of cART (combination antiretroviral therapy), HIV has evolved into a chronic disease such that it requires lifelong medical treatment to which patients must adhere. Communication with health care providers is pivotal in supporting patients to adapt to having HIV and adhering to treatment, in order to maintain health and quality of life. Previous research indicates that communication is optimal when it matches patient preferences for information exchange, relationship establishment, and involvement in treatment decisions. The aim of the present study is to explore HIV patient communication preferences as well as patient experiences with their providers (not) matching their preferences. A second aim is to explore provider beliefs about patient preferences and provider views on optimal communication. Data were collected through interviews with 28 patients and 11 providers from two academic hospitals. Results indicate that patient preferences reflect their cognitive, emotional, and practical needs such that patients look to increase their sense of control over their HIV. Patients aim to further increase their sense of control (by proxy) through their relationship with their providers and through their decisional involvement preferences. Providers are well aware of patient communication preferences but do not explicate underlying control needs. Implications for clinical practice are discussed.

Perspectives and Concerns on Late Effects Regarding Sexuality among Adolescents and Young Adults Treated for Testicular Germ Cell Tumor: The PRICELESS-Study-A Qualitative Study.

This study aimed to explore perspectives and concerns regarding sexuality among adolescents and young adults (AYAs) possibly experiencing late effects after testicular germ cell tumor (TGCT) treatment. A qualitative study was performed in which semi-structured interviews were held with thirteen AYAs from a center of expertise for TGCT in the Netherlands. Data were analyzed using Braun and Clark's thematic analysis method. Seven interacting and interconnected themes were found: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. Concerns about the desire to have children seem to play a significant role. In conclusion, TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appeared. These findings can help to make healthcare professionals aware of the underlying mechanisms and concerns about sexuality. Furthermore, insights can help to develop sexuality-themed items for a broader monitoring tool to structurally assess the late effects to support discussing sexuality.

What are the needs of frail older patients in the emergency department? A qualitative study.

BACKGROUND: There is an increase in the number of frail elderly patients presenting to the emergency department. Diagnosis and treatment for this patient group is challenging due to multimorbidity, a-typical presentation and polypharmacy and requires specialised knowledge and competencies from healthcare professionals. We aim to explore the needs and preferences regarding emergency care in frail older patients based on their experiences with received care during Emergency Department admission. METHOD: A qualitative study design was used, and semi-structured interviews were conducted after discharge with twelve frail older patients admitted to emergency departments in the Netherlands. Data collection and analysis were performed iteratively, and data were thematically analysed. RESULTS: The analysis enfolded the following themes; feeling disrupted, expecting to be cared for, suppressing their needs and wanting to be seen. These themes indicated a need for situational awareness by healthcare professionals when taking care of the participants and were influenced by the participants' life experiences. CONCLUSION: Frail older patients feel disrupted when admitted to the emergency department. Because of this, they expect to be cared for, lessen their own needs and want to be seen as human beings. The impact of the admission is influenced by the extent to which healthcare professionals show situational awareness.

The prevalence and intensity of late effects in patients with testicular germ cell tumors: A first step of instrument development using a stepwise approach.

PURPOSE: Patients with Testicular Germ Cell Tumors (TGCT) may suffer from several late effects due to their diagnosis or treatment. Follow-up care aims to identify the recurrence of cancer and support patients with TGCT in their experienced late effects. In the Netherlands, the validated Dutch version of the Edmonton Symptom Assessment System, Utrecht Symptom Diary (USD) is used to assess and monitor patient reported symptoms. As a first step to develop a specific USD module for TGCT-patients, it was necessary to identify the prevalence and intensity of late effects in patients with TGCT, covering the physical, social, psychical and existential domains of care. METHODS: A cross-sectional study was conducted. First, literature was systematically assessed to create a comprehensive list of symptoms. This generated list was reviewed by expert healthcare professionals and the research group. Lastly, a survey was distributed amongst patients with TGCT in follow-up care in the University Medical Center Utrecht (UMCU) outpatient clinic. RESULTS: In total, 65 TGCT-patients completed the survey. All described late effects were recognized by TGCT-patients, with 'fatigue', 'disturbed overall well-being', 'concentration problems' and 'neuropathy', indicated as most prevalent and scored with highest intensity. When prioritizing these late effects, patients assigned 'neuropathy' as most important. CONCLUSIONS: This study provided insight into prevalence and intensity of late effects, as indicated by TGCT-patients. In clinical practice, follow-up care can improve by empowering patients to discuss important items in daily life with their health-care professionals.

Patients' experiences with an audio-visual intervention, the use of a tailored explanimation video in patients with bladder cancer.

Objective: This qualitative study explored the experiences of patients with bladder cancer with a tailored 'explanimation' video (EV) as a supportive information tool used before and during treatment. Methods: Using a qualitative approach, data were collected through semi-structured interviews with 12 patients with bladder cancer and thematically analysed. Results: Participants advised future use of the EV, noting it is user friendly and has a fitting difficulty level and clarifying animations. However, some mentioned practical information on 'life after treatment' was lacking, and some emphasized the importance of choosing the right moment of delivery. Patients' experiences were described in four major themes: taking own responsibility, providing opportunity for postponed information supply, easing decision-making processes and gaining a sense of calm. Conclusion: Findings indicate the EV supported patients with bladder cancer in the process of being informed and in decision-making. Future use of the EV in the treatment of patients with bladder cancer is recommended. Innovation: The use of audiovisual information in patient education is innovative. Tailored audiovisual information in shape of the EV is a step forward in streamlining information processes, meeting individual preferences and highlighting the most important general information for patients with bladder cancer.

The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study.

Introduction: When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods: Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results: Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions: While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.

The experienced positive and negative influence of HIV on quality of life of people with HIV and vulnerable to HIV in the Netherlands.

This qualitative study aimed to explore the experienced influence of HIV on the quality of life (QoL) of people with HIV (PHIV) and key populations without but are vulnerable to HIV in the Netherlands. We conducted and thematically analyzed interviews with 29 PHIV and 13 participants from key populations without HIV (i.e., men who have sex with men). PHIV and key populations shared positive meaningful experiences regarding HIV, i.e., feeling grateful for ART, life, and the availability of PrEP, being loved and supported in the light of HIV, and providing support to the community. Negative predominant experiences regarding HIV were described by both PHIV and key populations as the negative effects of ART, challenges with regards to disclosing HIV, social stigmatization, and self-stigma. It remains important to support HIV community organizations in their efforts to reduce social stigmatization and to continue improving biomedical interventions for HIV.

A randomized study of intensified antiretroviral treatment monitoring versus standard-of-care for prevention of drug resistance and antiretroviral treatment switch.

INTRODUCTION: Standard-of-care antiretroviral treatment (ART) monitoring in low and middle-income countries consists of annual determination of HIV-RNA viral load with confirmatory viral load testing in case of viral rebound. We evaluated an intensified monitoring strategy of three-monthly viral load testing with additional drug exposure and drug resistance testing in case of viral rebound. METHODS: We performed an open-label randomized controlled trial (RCT) at a rural South African healthcare clinic, enrolling adults already receiving or newly initiating first-line ART. During 96 weeks follow-up, intervention participants received three-monthly viral load testing and sequential point-of-care drug exposure testing and DBS-based drug resistance testing in case of rebound above 1000 copies/ml. Control participants received standard-of-care monitoring according to the WHO guidelines. RESULTS: Five hundred one participants were included, of whom 416 (83.0%) were randomized at 24 weeks. Four hundred one participants were available for intention-to-treat analysis. Viral rebound occurred in 9.0% (18/199) of intervention participants and in 11.9% (24/202) of controls ( P  = 0.445). Time to detection of rebound was 375 days [interquartile range (IQR): 348-515] in intervention participants and 360 days [IQR: 338-464] in controls [hazard ratio: 0.88 (95% confidence interval (95% CI): 0.46-1.66]; P  = 0.683]. Duration of viral rebound was 87 days [IQR: 70-110] in intervention participants and 101 days [IQR: 78-213] in controls ( P  = 0.423). In the control arm, three patients with confirmed failure were switched to second-line ART. In the intervention arm, of three patients with confirmed failure, switch could initially be avoided in two cases. CONCLUSION: Three-monthly viral load testing did not significantly reduce the duration of viraemia when compared with standard-of-care annual viral load testing, providing randomized trial evidence in support of annual viral load monitoring.

The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

BACKGROUND: In the foreseeable future, patients with hepatitis C virus (HCV) with good healthcare access will all have been cured and the lost to follow-up (LFU) HCV-population will increasingly exist of hard-to-reach patients. Efforts to retrieve these individuals with HCV have been moderately successful so far. A deeper understanding of the reasons for loss to follow-up and the underlying processes is lacking. AIMS: To explore reasons for previous loss to follow-up in patients with HCV who have been brought back into care. METHODS: In 2017, fifteen patients with HCV who were evaluated at the University Medical Center Utrecht (UMCU) Infectious diseases outpatient clinic as part of the "REtrieval And cure of Chronic Hepatitis C" (REACH)-project were included in this study through convenience sampling. Face-to-face semi-structured in-depth interviews were conducted and a qualitative analysis based on the grounded theory was applied. RESULTS: A basic socio- psychological process named "maintaining the achieved balance" was uncovered in patients with HCV who were LFU. This "achieved balance" is the result of a transformative process following the initial HCV diagnosis. It is a steadfast stance in which participants keep HCV out of sight and in the margin of their lives in order to reestablish an optimal state of well-being. The balancing perspective is subsequently defended by repeated evasive behavioral patterns to avoid confrontation with the disease. CONCLUSION: The balancing perspective gives insight into why individuals with HCV were not retained in care but also why they remained LFU thereafter. Physicians should realize that this mindset can be persistent and repeated efforts may be needed to finally trace and retrieve these patients.

Adherence to HAART: processes explaining adherence behavior in acceptors and non-acceptors.

In order to explore and clarify the underlying processes which lead to (non)-adherence behavior in patients treated with highly active antiretroviral therapy (HAART), a qualitative study was conducted. Thirty-seven in-depth interviews were held with 30 Caucasian HIV-positive patients. Additional data were collected by diaries kept by some participants. The analysis took place in a cyclic process; selection of themes was alternated with input of new material. Adherence to HAART is mainly influenced by the experience of being HIV positive. Acceptance or non-acceptance of HIV leads to one of two basic stances toward adherence: "being determined to be adherent" or "medication is subordinate to other priorities in life". This stance determines the commitment to therapy and influences how patients cope with adherence. Patients who are determined to be adherent find solutions to adherence problems. Patients who are not determined to be adherent solve problems only if the solution does not compromise important aspects of their lives. Insight is provided into the manner in which prevalent themes; "start of HAART", "attitude toward medication", "HAART in daily life", "contextual factors", "health and HAART" and "being informed", influence adherence behavior. Before starting HAART the focus should be on helping the patient to accept HIV as a part of life. The findings need to be taken into account in adherence-promoting interventions.

Patients' experiences with a behaviour change intervention to enhance physical activity in primary care: A mixed methods study.

OBJECTIVE: To explore the experiences of patients at risk for cardiovascular disease in primary care with the Activate intervention in relation to their success in increasing their physical activity. METHODS: A convergent mixed methods study was conducted, parallel to a cluster-randomised controlled trial in primary care, using a questionnaire and semi-structured interviews. Questionnaires from 67 patients were analysed, and semi-structured interviews of 22 patients were thematically analysed. Experiences of patients who had objectively increased their physical activity (responders) were compared to those who had not (non-responders). Objective success was analysed in relation to self-perceived success. RESULTS: The questionnaire and interview data corresponded, and no substantial differences among responders and non-responders emerged. Participating in the intervention increased patients' awareness of their physical activity and their physical activity level. Key components of the intervention were the subsequent support of nurses with whom patients' have a trustful relationship and the use of self-monitoring tools. Patients highly valued jointly setting goals, planning actions, receiving feedback and review on their goal attainment and jointly solving problems. Nurses' support, the use of self-monitoring tools, and involving others incentivised patients to increase their physical activity. Internal circumstances and external circumstances challenged patients' engagement in increasing and maintaining their physical activity. CONCLUSION: Patients experienced the Activate intervention as valuable to increase and maintain their physical activity, irrespective of their objective change in physical activity. The findings enable the understanding of the effectiveness of the intervention and implementation in primary care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02725203.

User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study.

BACKGROUND: Partners are often the main caregivers in the care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing care during the progressive and fatal disease course of these patients is challenging and many caregivers experience feelings of distress. A blended psychosocial support program based on Acceptance and Commitment Therapy was developed to support partners of patients with ALS and PMA. The aim of this qualitative study is to gather insight into experiences with different components of the support program (program evaluation) and to discover what caregivers gained from following the program (mechanisms of impact). METHODS: Individual in-depth interviews, about caregivers' experiences with the support program were conducted with 23 caregivers of ALS/PMA patients enrolled in a randomized controlled trial designed to measure the effectiveness of the blended psychosocial support program. The program, performed under the guidance of a psychologist, consists of psychoeducation, psychological and mindfulness exercises, practical tips and information, and options for peer contact. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. RESULTS: The program evaluation showed that caregivers perceived each component of the program as beneficial but ambivalent reactions were expressed about the mindfulness exercises and peer contact functions. Caregivers expressed the need for a more personalized program with respect to the order and timing of the modules and wanted to continue the support program for a longer time. The main mechanism of impact of the program that caregivers reported was that they became more aware of their own situation. They further indicated that the program helped them to perceive control over the caregiving situation, to accept negative emotions and thoughts, to be there for their partner and feel acknowledged. CONCLUSIONS: The blended psychosocial support program for caregivers of patients with ALS/PMA is valued by caregivers for enhancing self-reflection on their challenging situation which stimulated them to make choices in line with their own needs and increased their feeling of control over caregiving. The different components of the program were overall appreciated by caregivers, but the mindfulness and peer support components should be further adapted to the needs of the caregivers. TRIAL REGISTRATION: Dutch Trialregister NTR5734 , registered 28 March 2016.

Patient-centeredness in physiotherapy: What does it entail? A systematic review of qualitative studies.

PURPOSE: The literature review is aimed at examining and summarizing themes related to patient-centeredness identified in qualitative research from the perspectives of patients and physiotherapists. Following the review, a secondary aim was to synthesize the themes to construct a proposed conceptual framework for utilization within physiotherapy. METHODS: A systematic search of qualitative studies was conducted including all articles up to 2015 September. Methodological quality was examined with a checklist. The studies were examined for themes suggestive of the practice of patient centeredness from perspective of the therapists and/or the patients. Data were extracted using a data extraction form and analyzed following "thematic synthesis." RESULTS: Fourteen articles were included. Methodological quality was high in five studies. Eight major descriptive themes and four subthemes (ST) were identified. The descriptive themes were: individuality (ST "Getting to know the patient" and ST "Individualized treatment"), education, communication (ST "Non-verbal communication"), goal setting, support (ST "Empowerment"), social characteristics of a patient-centered physiotherapist, a confident physiotherapist, and knowledge and skills of a patient-centered physiotherapist. CONCLUSIONS: Patient-centeredness in physiotherapy entails the characteristics of offering an individualized treatment, continuous communication (verbal and non-verbal), education during all aspects of treatment, working with patient-defined goals in a treatment in which the patient is supported and empowered with a physiotherapist having social skills, being confident and showing specific knowledge.