Lung transplant recipients' experiences of and attitudes towards self-management: a qualitative systematic review.

OBJECTIVE: The objective of this review was to identify lung transplant recipients' experiences of and attitudes towards self-management. INTRODUCTION: Lung transplantation is an established treatment to improve the survival of patients with end-stage lung diseases and has been performed on over 40,000 patients worldwide. The current focus of care for lung transplant recipients is on their long-term management. Patients need to adapt and adhere to complex self-management tasks to prevent complications and to enable them to keep the transplanted graft as long as possible. However, to date, no qualitative systematic review exists that identifies lung transplant recipients' experiences of and attitudes towards self-management. INCLUSION CRITERIA: This review included adults over 18 years of age who had received a lung transplant and were able to perform their self-management tasks independently. All studies that investigated lung transplant recipients' experiences of and attitudes towards self-management in any setting were included in this review. All types of studies that focused on qualitative data, including, but not limited to, phenomenology, grounded theory, ethnography, action research, and feminist research were considered for inclusion. Mixed methods studies were included only when qualitative data could be extracted separately, and if they reported results relating to the phenomena of interest. Studies published in English or German were considered for inclusion in this review. METHODS: The search strategy aimed to find published studies from 6 databases from the database inception to March 2022. Methodological quality of studies was independently assessed by 2 independent reviewers using the JBI checklist for qualitative research. A standardized data extraction tool from JBI was used by 2 reviewers for data collection. Meta-aggregation was undertaken to synthesize the data, and the final synthesis of the findings was reached through discussion. Results were graded according to ConQual. RESULTS: Ten studies with a sample size from 8 to 73 participants from North America and Central/Northern Europe were included in the review. The critical appraisal scores of the included studies varied from 3 to 9 out of 10. A total of 137 findings were extracted and aggregated to form 19 categories and the following 4 aggregated syntheses: i) Changes in routines, beliefs, and sense of responsibility are essential for better adaptation and self-management after lung transplantation; ii) Life after transplantation is characterized by both positive and negative feelings and experiences; iii) Better adjustment and self-management after a lung transplant require dealing with one's own feelings and beliefs; iv) After transplantation, engaging with relatives, friends, medical team and donors is essential to improve experiences and adapt to being a transplant recipient. Based on the ConQual scores, 2 synthesized findings were graded as moderate and 2 as low. CONCLUSIONS: Nuanced emotional, social, relational, and psychological adjustment is required of lung transplant recipients to be able to successfully self-manage. Loved ones and health professionals contribute significantly to this process, but psychosocial or peer support may further facilitate this transition. SUPPLEMENTAL DIGITAL CONTENT: A German-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A46].

Defining Self-Management for Solid Organ Transplantation Recipients: A Mixed Method Study.

Patients with Solid Organ Transplantations (SOTx) face long-term lifestyle adaptations, psychological and social adjustments, and complex self-care regimes to maintain health post-transplant. Self-management (SM) skills represent important aspects of nursing communication with SOTx patients; however, there is potential for SM to be defined narrowly in terms of medication adherence. The study presented here collated the existing definitions in a mixed method review in order to identify SM attributes for this group (including those unique to this population). Secondary analysis of a dataset and bibliographic analysis and an expert panel were used to develop a comprehensive working definition of SOTx patients. The analysis comprised critical interpretation of the evolving definition content, concepts, and contexts of application in current usages and over time. We identified eight definitions and 63 cited definition sources from bibliographic analysis. Findings identified limitations of the existing definitions. Population-specific attributes included optimisation of transplant outcomes, active engagement in healthy behaviours, control, structure, and discipline characteristics, and moderating factors of patient motivation, self-efficacy, and cognitive function. A critical appraisal of definitions indicated inadequately defined aspects such as setting, temporal dimension, concept interaction, interventions, and measurable outcomes. The bibliographic analysis highlighted the influence of broader chronic illness constructions of SM, underpinning the generalisable SM attributes in current definitions. Further research may advance the development of a definition in exploring the relevance of SOTx-specific attributes of the definition.

Self-management in adults after solid-organ transplantation: a scoping review protocol.

INTRODUCTION: After solid-organ transplantation (SOTx), recipients must adhere to a lifelong medical regimen, change their lifestyle and cope with physiological and psychosocial challenges. This requires active participation in their care and self-management abilities. The concept of self-management after SOTx has only been described regarding specific organs and focused on adherence to medical treatment. A comprehensive conceptualisation of self-management entailing all solid organs and beyond medical aspects does not exist. This might lead to unmet self-management support needs of SOTx recipients and hinder a more holistic and integrative approach in self-management support. Therefore, a better understanding of the concept of self-management after SOTx is needed to facilitate a comprehensive evidence base for healthcare providers and researchers. The purpose of this scoping review is to explore existing evidence on self-management in adults after SOTx. METHODS AND ANALYSIS: To identify relevant evidence, six electronic databases and three study registers will be searched, supplemented by handsearches, reference checking and expert recommendations. Screening and selection of available evidence will be carried out in a two-step process by two independent reviewers. International evidence published in English or German reporting on adults after heart, lung, liver, pancreas, kidney or small bowel transplantation will be considered. To meet inclusion criteria, articles have to focus on either: self-management, self-management support or recipients' or healthcare providers' perspectives of challenges and needs potentially addressable by self-management. Data extraction will be performed by two reviewers independently using a structured form. Data will be analysed descriptively and using content analysis procedures. Findings will be summarised narratively and presented in tabular format. ETHICS AND DISSEMINATION: The consultation and approval of an ethics committee is not required for this scoping review. Findings of the scoping review will be published in a peer-reviewed open-access journal and presented at conferences.

Impact of primary and recurrent genital herpes on the quality of life of young people and adults: a mixed methods systematic review.

OBJECTIVE: This review sought to identify the experiences of persons living with genital herpes and what interventions improve the health-related quality of life of young people and adults with primary or recurrent genital herpes. INTRODUCTION: Genital herpes is commonly associated with psychosocial challenges. However, a growing body of evidence suggests that its impact can be ameliorated through pharmacological and psychosocial interventions. INCLUSION CRITERIA: This review considered English- and German-language studies of community-dwelling males and females, of any ethnicity and geographical location, aged 15 years and older, who had primary or recurrent genital herpes. The quantitative component of the review included studies that reported on the virus' impact on patients' health-related quality of life and/or the efficacy of interventions in improving their health-related quality of life. Studies compared antiviral suppression therapies and psychological interventions with usual care or placebo, or against one another. The qualitative component of the review included studies that investigated the perceptions and experiences of young people and adults with genital herpes. METHODS: Eleven databases were searched from January 1980 to March 2020. The JBI approach to mixed methods systematic reviews was followed at each stage of the review, and a convergent segregated approach to synthesis and integration was adopted. RESULTS: A total of 31 publications covering 30 studies were deemed suitable for inclusion. Studies encompassed quantitative (n = 27, across 28 publications), qualitative (n = 1), and mixed methods (n = 2) designs. Critical appraisal scores were variable, particularly among the randomized controlled trials and the analytical cross-sectional studies. All studies were included regardless of methodological quality. The quantitative components identified that depression, illness concern, stress, anxiety, isolation, stigma, and a lowering of self-esteem, self-concept, self-confidence, and health-related quality of life may be experienced by both those newly diagnosed with genital herpes and those with recurrences. It was also identified that genital herpes can have an adverse effect on work or school, sexual relationships, and relationships with friends and family. Depression was found to significantly decrease after self-hypnosis and certain psychosocial interventions. Anxiety significantly decreased following pharmacological treatment, psychosocial interventions, and hypnosis. Psychosocial interventions significantly improved mood, and a self-help module with counseling significantly improved participants' satisfaction with intimate relationships and their self-esteem. Pharmacological treatment significantly improved health-related quality of life; however, there were no significant differences between different active treatment regimens. The qualitative component of the review led to the identification of two synthesized findings: "Disclosure of a diagnosis of genital herpes poses a dilemma for people who have the virus" and "A diagnosis of genital herpes has a significant emotional impact for the individual."Integration of quantitative and qualitative evidence revealed a consensus that a diagnosis of genital herpes has a significant emotional impact for individuals and that disclosure is stressful, affects relationships, and affects health-related quality of life; however, there is a lack of consensus regarding efficacy of different interventions. CONCLUSIONS: Genital herpes can lead to extreme emotional, social, relational, and sexual distress, but there is insufficient knowledge concerning which interventions best improve health-related quality of life. More high-quality research is required.

Balancing normalcy and safety: health-related needs in patients with a ventricular assist device within their home environment.

AIMS: Ventricular assist device (VAD) implantation has become a well-established treatment strategy for patients suffering from advanced heart failure. Ventricular assist device treatment attempts to ameliorate the symptom burden but may create new challenges in patients' lives. Lacking are insights into perceived challenges and health-related needs of patients with VAD within their home environment. Our study aimed to explore the perceived health-related needs of patients living with a VAD in their home environment. METHODS AND RESULTS: We used a qualitative approach based on a hermeneutic, directed content analysis design. Telephone-based interviews were conducted with 10 patients with VAD from a single cardiology centre in Germany. Data collection and analyses were carried out using content-structuring content analyses. Normalcy and safety were identified as overarching themes: participants expressed a need to balance daily activities between striving for normalcy and maintaining safety. Underlying necessities reflecting this balance were categorized as functional, social, and mental health-related needs. Learning by doing, social-, and peer support were described as relevant requisites. Fulfilling these health-related needs could aid patients living with VAD in achieving the sense of normalcy and safety they seek. CONCLUSION: Balancing health-related needs with striving for normalcy and safety, emerged as a new core concept for patients with VAD. Thus, being cognizant of this balance when caring for these patients, could facilitate coping after VAD implantation through increasing acceptance of limitations to daily functions by enhancing individual safety. A supportive social environment, including peer support, becomes vital in self-management programs preparing patients with VAD for their home environment.

Health-related quality of life of young people and adults with primary or recurrent episodes of genital herpes: a mixed methods systematic review protocol.

REVIEW QUESTION: The review questions are:The specific objectives are:This mixed methods review seeks to develop an aggregated synthesis of quantitative and qualitative data on the HRQOL implications of genital herpes for the individual in order to derive conclusions and recommendations for clinical practice and policy decision making.

Lung transplant recipients' experiences of and attitudes towards self-management: a qualitative systematic review protocol.

REVIEW QUESTION: The question for this review is: what are lung transplant recipients' experiences of and attitudes towards self-management?

Medication Adherence After Renal Transplantation-a Review of the Literature.

BACKGROUND: Whether or not patients follow the advice given by their healthcare professional is commonly referred to as adherence. In the case of kidney transplantation, transplant recipients need to take immunosuppressive drugs on a regular basis to prevent rejection of their transplant. However, medication adherence can be problematic for many patients. OBJECTIVES: This critical appraisal of evidence aimed to gain insights into factors contributing to adherence and non-adherence in recipients of kidney transplants, and to explore patients' perceptions regarding adherence to immunosuppression. METHODS: A comprehensive literature search was performed using Medline, PsycInfo, the Joanna Briggs Institute, CINAHL and the Cochrane Library. Included were primary research studies or reviews of primary research, independent of their research paradigms, on adult kidney or kidney/pancreas transplant recipients published in English or German. Children or adolescents were not considered. No time-frame was applied RESULTS: Fifty-two papers were included in the review. All extracted findings of included papers were organised according to the five factors influencing medication-taking behaviour as defined by the World Health Organisation: social and economic factors; therapy-related factors; patient-related factors; condition-related factors; healthcare team and system-related factors. CONCLUSION: Reasons for non-adherence after kidney transplantations are diverse. Attention is attracted by the fact that potentially modifiable factors such as social support, experiences on dialysis, side effects, features of the treatment regimen, intentions and beliefs, forgetfulness and mental health issues play a greater role than other factors in the development of medication non-adherence. Factors not related to patient characteristics seem to be under researched.

Transplant Nurses' Work Environment: A Cross-Sectional Multi-Center Study.

BACKGROUND Numerically, nurses represent the largest healthcare profession, thus setting norms for the quality and safety of direct patient care. Evidence of a global shortage of nurses in all clinical practice settings across different healthcare systems and countries has been documented. The aims of the present study were: (1) to assess work environments in a sample of German transplant nurses, and (2) to compare their statements with a US-based sample. MATERIAL AND METHODS In a cross-sectional study, 181 transplant nurses from 16 German transplant centers provided information on their work environments. The translated version of the Job Design (JD) and Job Satisfaction (JS) survey showed satisfactory internal consistency for the JD (0.78) and JS (0.93) subscales. German nurses' work environments were compared with 331 transplant nurses from the US. RESULTS The majority of transplant nurses were female (81.8%), 55.4% were age 21-40 years, and 78.1% were employed full-time. German (versus US) transplant nurses reported their job design to be best for 'skill varieties' (p≤0.0002), and worst for 'autonomy' (p≤0.01). Job satisfaction was best with 'opportunities for autonomy and growth' (p≤0.0001), and 'pay and benefits' (p≤0.0001) was lowest. A higher professional degree (OR 1.57; p≤0.03; 95% CI 1.19-2.86), and longer time in transplant (OR 1.24; p≤0.001; 95% CI 1.11-1.38) showed a positive impact on German transplant nurses' perceptions of 'job satisfaction'. Nurses with time-dependent working contracts perceived more stress negatively affecting job satisfaction (OR 1.13; p≤0.009; 95% CI 1.02-12.82). CONCLUSIONS German specialty nurses working in the field of solid organ transplantation rate their work environments with respect to job design and job satisfaction as satisfactory. Institutions' investment into satisfactory nurse work environments and specializing nurses might increase the quality of care, thus improving patient outcomes.