Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study.

BACKGROUND: Children with chronic kidney disease (CKD) generally have worse educational and psychosocial outcomes compared with their healthy peers. This can impair their ability to manage their treatment, which in turn can have long-term health consequences through to adulthood. We attempted to capture the experiences of children with CKD and to describe the perspectives of their parents and caregivers on access to educational and psychosocial support. METHODS: Children with CKD (n = 34) and their caregivers (n = 62) were sampled via focus groups from pediatric hospitals in Australia, Canada, and the USA. Sixteen focus groups were convened and the transcripts were analyzed thematically. RESULTS: We identified four themes: disruption to self-esteem and identity (emotional turmoil of adolescence, wrestling with the sick self, powerlessness to alleviate child's suffering, balancing normality and protection); disadvantaged by lack of empathy and acceptance (alienated by ignorance, bearing the burden alone); a hidden and inaccessible support system (excluded from formal psychological support, falling behind due to being denied special considerations); and building resilience (finding partners in the journey, moving towards acceptance of the illness, re-establishing childhood). CONCLUSIONS: Children with CKD and their caregivers encountered many barriers in accessing psychosocial and educational support and felt extremely disempowered and isolated as a consequence. Improved availability and access to psychosocial and educational interventions are needed to improve the wellbeing and educational advancement of children with CKD. A higher resolution version of the Graphical abstract is available as Supplementary information.

Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study.

RATIONALE & OBJECTIVE: Clinical decision-making priorities may differ among children, their parents, and their clinicians. This study describes clinicians' perspectives on shared decision making in pediatric chronic kidney disease (CKD) and identifies opportunities to improve shared decision making and care for children with CKD and their families. STUDY DESIGN: Semistructured interviews. SETTING & PARTICIPANTS: Fifty clinicians participated, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists involved in providing care to children with CKD. They worked at 18 hospitals and 4 university research departments across 11 countries (United States of America, Canada, Australia, People's Republic of China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand, and Singapore). ANALYTICAL APPROACH: Interview transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), (2) focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), (3) collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision making, sensitive to parental distress), and (4) forming cumulative knowledge (balancing reassurance and realistic expectations, building understanding around treatment, harnessing motivation for long-term goals). LIMITATIONS: Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain. CONCLUSIONS: Clinicians reported striving to minimize treatment burden and working with children and their families to manage their expectations and support their decision making. However, they are challenged with system constraints and sometimes felt the pressure of being responsible for the child's long-term outcomes. Further studies are needed to test whether support for shared decision making would promote strategies to establish and improve the quality of care for children with CKD.

Patient and caregiver perspectives on blood pressure in children with chronic kidney disease.

BACKGROUND: More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. METHODS: Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology-Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8-21 years) and caregivers (of children ages 0-21 years) pertaining to blood pressure. RESULTS: Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). CONCLUSIONS: For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD.

Patient and caregiver perspectives on sleep in dialysis.

Sleep disturbances are common among patients receiving dialysis and are associated with an increased risk of mortality and morbidity, and impaired quality of life. Despite being highly prioritised by patients, sleep problems remain under-diagnosed and inadequately managed. The aim of the present study was to describe the perspectives of patients receiving dialysis and their caregivers on sleep. We extracted qualitative data on sleep from 26 focus groups, two international Delphi surveys, and two consensus workshops involving 644 patients and caregivers from 86 countries as part of the Standardised Outcomes in Nephrology-Haemodialysis and -Peritoneal Dialysis (SONG-HD/SONG-PD) initiatives. The responses were from patients aged ≥18 years receiving haemodialysis or peritoneal dialysis, and their caregivers. We analysed the data using thematic analysis with five themes identified: constraining daily living (with subthemes of: battling intrusive tiredness, exacerbating debilitating conditions, broken and incapacitated); roadblocks in relationships (unable to meet family needs, antipathy due to misunderstanding, wreaking emotional havoc); burden on caregivers (stress on support persons, remaining alert to help); losing enjoyment (limiting social contact, disempowerment in life); and undermining mental resilience (aggravating low mood, diminishing coping skills, reducing functional ability). Sleep disturbances are exhausting for patients on dialysis and pervade all aspects of their lives including the ability to do daily tasks, and maintaining relationships, mental and emotional well-being. Better assessment and management of sleep problems in dialysis is needed, which may lead to improvements in overall health and quality of life.

Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops.

Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.

Communication during childhood cancer: Systematic review of patient perspectives.

Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer.

Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey.

RATIONALE & OBJECTIVE: The inconsistency in outcomes reported and lack of patient-reported outcomes across trials in children with chronic kidney disease (CKD) limits shared decision making. As part of the Standardized Outcomes in Nephrology (SONG)-Kids initiative, we aimed to generate a consensus-based prioritized list of critically important outcomes to be reported in all trials in children with CKD. STUDY DESIGN: An online 2-round Delphi survey in English, French, and Hindi languages. SETTINGS & PARTICIPANTS: Patients (aged 8-21 years), caregivers/family, and health care professionals (HCPs) rated the importance of outcomes using a 9-point Likert scale (7-9 indicating critical importance) and completed a Best-Worst Scale. ANALYTICAL APPROACH: We assessed the absolute and relative importance of outcomes. Comments were analyzed thematically. RESULTS: 557 participants (72 [13%] patients, 132 [24%] caregivers, and 353 [63%] HCPs) from 48 countries completed round 1 and 312 (56%) participants (28 [40%] patients, 64 [46%] caregivers, and 220 [56%] HCPs) completed round 2. Five outcomes were common in the top 10 for each group: mortality, kidney function, life participation, blood pressure, and infection. Caregivers and HCPs rated cardiovascular disease higher than patients. Patients gave lower ratings to all outcomes compared with caregivers/HCPs except they rated life participation (round 2 mean difference, 0.1), academic performance (0.1), mobility (0.4), and ability to travel (0.4) higher than caregivers and rated ability to travel (0.4) higher than HCPs. We identified 3 themes: alleviating disease and treatment burden, focusing on the whole child, and resolving fluctuating and conflicting goals. LIMITATIONS: Most participants completed the survey in English. CONCLUSIONS: Mortality, life participation, kidney function, and blood pressure were consistently highly prioritized by patients, caregivers, and HCPs. Patients gave higher priority to some lifestyle-related outcomes compared with caregivers/HCPs. Establishing critically important outcomes for all trials in children with CKD may improve consistent reporting of survival, kidney health, and clinical and life impact outcomes that are meaningful for decision making.

Perspectives on mental health among patients receiving dialysis.

BACKGROUND: Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. METHODS: A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. RESULTS: A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). CONCLUSIONS: Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed.

Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study.

RATIONALE & OBJECTIVE: Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers. STUDY DESIGN: We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. SETTINGS & PARTICIPANTS: Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada. ANALYTICAL APPROACH: Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. RESULTS: 34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations). LIMITATIONS: Only English-speaking participants were recruited. CONCLUSIONS: Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.

Establishing a Core Outcome Measure for Fatigue in Patients on Hemodialysis: A Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop Report.

Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions. Transcripts were analyzed thematically. 4 themes for a core outcome measure emerged. Drawing attention to a distinct and all-encompassing symptom was explicitly recognizing fatigue as a multifaceted symptom unique to hemodialysis. Emphasizing the pervasive impact of fatigue on life participation justified the focus on how fatigue severely impaired the patient's ability to do usual activities. Ensuring relevance and accuracy in measuring fatigue would facilitate shared decision making about treatment. Minimizing burden of administration meant avoiding the cognitive burden, additional time, and resources required to use the measure. A core outcome measure that is simple, is short, and includes a focus on the severity of the impact of fatigue on life participation may facilitate consistent and meaningful measurement of fatigue in all trials to inform decision making and care of patients receiving hemodialysis.

Report of the Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Consensus Workshop on Establishing a Core Outcome Measure for Hemodialysis Vascular Access.

Vascular access outcomes in hemodialysis are critically important for patients and clinicians, but frequently are neither patient relevant nor measured consistently in randomized trials. A Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop was convened to discuss the development of a core outcome measure for vascular access. 13 patients/caregivers and 46 professionals (clinicians, policy makers, industry representatives, and researchers) attended. Participants advocated for vascular access function to be a core outcome based on the broad applicability of function regardless of access type, involvement of a multidisciplinary team in achieving a functioning access, and the impact of access function on quality of life, survival, and other access-related outcomes. A core outcome measure for vascular access required demonstrable feasibility for implementation across different clinical and trial settings. Participants advocated for a practical and flexible outcome measure with a simple actionable definition. Integrating patients' values and preferences was warranted to enhance the relevance of the measure. Proposed outcome measures for function included "uninterrupted use of the access without the need for interventions" and "ability to receive prescribed dialysis," but not "access blood flow," which was deemed too expensive and unreliable. These recommendations will inform the definition and implementation of a core outcome measure for vascular access function in hemodialysis trials.

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study.

BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden). LIMITATIONS: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

Children's experiences of congenital heart disease: a systematic review of qualitative studies.

We aimed to describe the experiences of children and adolescents with congenital heart disease (CHD). Electronic databases were searched until August 2016. Qualitative studies of children's perspectives on CHD were included. Data was extracted using thematic synthesis. From 44 studies from 12 countries involving 995 children, we identified 6 themes: disrupting normality (denying the diagnosis, oscillating between sickness and health, destabilizing the family dynamic), powerlessness in deteriorating health (preoccupation with impending mortality, vulnerability to catastrophic complications, exhaustion from medical testing), enduring medical ordeals (traumatized by invasive procedures, disappointed by treatment failure, displaced by transition, valuing empathy and continuity in care, overcoming uncertainty with information), warring with the body (losing stamina, distressing inability to participate in sport, distorted body image, testing the limits), hampering potential and goals (feeling disabled, unfair judgment and exclusion, difficulties with academic achievement, limiting attainment and maintenance of life milestones), and establishing one's own pace (demarcating disease from life, determination to survive, taking limitations in their stride, embracing the positives, finding personal enrichment, relying on social or spiritual support). CONCLUSION: Children with CHD feel vulnerable and burdened by debilitating physical symptoms, unpredictable complications, and discrimination. Clinicians may support patients by sharing recognition of these profound psychosocial consequences. What is Known: • CHD is associated with difficulties in learning and attention, school absenteeism, decreased endurance, poor body image, and peer socialization • What is lesser known is how young patients cope with the symptoms, prognostic uncertainty, and treatment burden What is New: • We found that children are challenged by lifestyle restrictions, fear of invasive procedures, impaired body image, discrimination, and uncertainty about the future. Feelings of disempowerment are intensified by the unpredictability of disease progression • Thus, strategies to improve outcomes include improved patient education on disease and lifestyle management and partnership with school teachers and counselors for unique psychosocial support.

Range and Heterogeneity of Outcomes in Randomized Trials of Pediatric Chronic Kidney Disease.

OBJECTIVE: To determine the range and heterogeneity of outcomes reported in randomized controlled trials of interventions for children with chronic kidney disease (CKD). STUDY DESIGN: The Cochrane Kidney and Transplant Specialized Register was searched to March 2016. Randomized trials involving children across all stages of CKD were selected. All outcome domains and measurements were extracted from included trials. The frequency and characteristics of the outcome domains and measures were evaluated. RESULTS: From 205 trials included, 6158 different measurements of 100 different outcome domains were reported, with a median of 22 domains per trial (IQR 13-41). Overall, 52 domains (52%) were surrogate, 38 (38%) were clinical, and 10 (10%) were patient-reported. The 5 most commonly reported domains were blood pressure (76 [37%] trials), relapse/remission (70 [34%]), kidney function (66 [32%]), infection (61 [30%]), and height/pubertal development (51 [25%]). Mortality (14%), cardiovascular disease (4%), and quality of life (1%) were reported infrequently. The 2 most frequently reported outcomes, blood pressure and relapse/remission, had 56 and 81 different outcome measures, respectively. CONCLUSIONS: The outcomes reported in clinical trials involving children with CKD are extremely heterogeneous and are most often surrogate outcomes, rather than clinical and patient-centered outcomes such as cardiovascular disease and quality of life. Efforts to ensure consistent reporting of outcomes that are important to patients and clinicians will improve the value of trials to guide clinical decision-making. In our study, non-English articles were excluded.

Donor and Recipient Views on Their Relationship in Living Kidney Donation: Thematic Synthesis of Qualitative Studies.

BACKGROUND: Many donors and recipients report an improved relationship after transplantation; however, tension, neglect, guilt, and proprietorial concern over the recipient can impede donor and recipient well-being and outcomes. We aimed to describe donor and recipient expectations and experiences of their relationship in the context of living kidney donation. STUDY DESIGN: Thematic synthesis of qualitative studies. SETTING & POPULATION: Living kidney donors and recipients. SEARCH STRATEGY & SOURCES: Electronic databases were searched to October 2015. ANALYTICAL APPROACH: Thematic synthesis. RESULTS: From 40 studies involving 1,440 participants (889 donors and 551 recipients) from 13 countries, we identified 6 themes. "Burden of obligation" described the recipient's perpetual sense of duty to demonstrate gratitude to the donor. "Earning acceptance" was the expectation that donation would restore relationships. "Developing a unique connection" reflected the inexplicable bond that donor-recipient dyads developed postdonation. "Desiring attention" was expressed by donors who wanted recognition for the act of donation and were envious and resentful of the attention the recipient received. "Retaining kidney ownership" reflected the donor's inclination to ensure that the recipient protected "their" kidney. "Enhancing social participation" encompassed relieving both the caregiver from the constraints of dialysis and the recipient from increased involvement and contribution in family life. LIMITATIONS: Non-English articles were excluded. CONCLUSIONS: Living kidney donation can strengthen donor-recipient relationships but may trigger or exacerbate unresolved angst, tension, jealousy, and resentment. Facilitating access to pre- and posttransplantation psychological support that addresses potential relationship changes may help donors and recipients better adjust to changes in the relationship dynamics, which in turn may contribute to improved psychosocial and transplantation outcomes following living kidney donation.

In their own words: the value of qualitative research to improve the care of children with chronic kidney disease.

Patient- and family-centered care is hailed as a hallmark of high-quality pediatric care. This partnership between patients, families and their healthcare providers is central to caring for children with chronic kidney disease (CKD), given the long-term and profound impact of the disease and its treatment on the development and quality of life of these children. This paradigm hinges on a comprehensive and detailed understanding of the needs, beliefs and values of children with CKD and their families. However, their perspectives may remain undisclosed during time-limited clinical consultations and because of beliefs that if they did disclose their concerns, their care would be jeopardized. Qualitative research provides an avenue for children and families to articulate their perspectives and experiences and thereby to generate relevant, in-depth and often compelling insights to inform care. Yet, qualitative studies remain sparse in biomedical journals. Increasing both our awareness of the role of qualitative research in improving care and outcomes for children and adolescents with CKD and our understanding of the conduct and rigor of qualitative studies is required. This article will outline how qualitative research can generate relevant evidence to inform practice and policy in children with CKD, provide an overview of qualitative methods and introduce a framework to appraise qualitative research. More evidence derived from qualitative research is needed to inform shared decision-making and the development of interventions and policies that address the preferences and priorities of children with CKD and their families. Ultimately, this strategy may help to improve the outcomes that they regard as critical to their care.

Patient experiences of training and transition to home haemodialysis: A mixed-methods study.

AIM: This study aims to describe patients' perspectives on the transition to home haemodialysis. METHODS: Up to three sequential semi-structured interviews were conducted with 20 patients during the transition to home haemodialysis at an Australian renal unit. Transcripts were analysed thematically. Participants completed a satisfaction questionnaire after commencing home haemodialysis. RESULTS: We identified six themes: persevering despite trepidations (diminishing intimidation of machinery, acquiescing to fatal risks, reconciling fears of cannulation, dispelling concerns of neglect and tolerating necessary concessions); optimizing the learning pathway (practising problem solving, learning from mistakes, grasping technical complexity, minimizing cognitive overload and progressing at own pace); developing confidence (believing in own abilities, adapting to independence, depending on caregiver partnership and faith in crisis support); interrupted transition momentum (lacking individual attention, language barriers, installation delays, interfering illness and complications and acclimatizing to new conditions); noticing immediate gains (reclaiming lifestyle normality, satisfying self-sufficiency, personalizing treatment regime and thriving in a positive environment); and depleting resources and energy (exhaustion with gruelling routine, confronting medicalization of the home, draining financial reserves and imposing family burden). Fewer than 30% of respondents indicated low satisfaction with staff availability domains, staff interpersonal domains or technical domains. CONCLUSION: Home haemodialysis training fosters confidence in patients; however, many patients experience stress because of medical isolation, treatment responsibilities, family impositions and financial difficulties. Addressing patient's on-going psychosocial concerns may alleviate burdens on patients and their families during the transition to home haemodialysis.

Motivations, Challenges, and Attitudes to Self-management in Kidney Transplant Recipients: A Systematic Review of Qualitative Studies.

BACKGROUND: Kidney transplantation offers better outcomes compared to dialysis, but requires patients to adhere to an ongoing and complex self-management regimen. Medication nonadherence remains a leading cause of transplant loss, and inadequate self-management undermines transplantation and other health outcomes. We aimed to describe kidney transplant recipients' motivations, challenges, and attitudes toward self-management. STUDY DESIGN: Systematic review and thematic synthesis of qualitative studies. SETTING & POPULATION: Kidney transplant recipients. SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched to October 2014. ANALYTICAL APPROACH: Thematic synthesis. RESULTS: 50 studies involving 1,238 recipients aged 18 to 82 years across 19 countries were included. We identified 5 themes: empowerment through autonomy (achieving mastery, tracking against tangible targets, developing bodily intuition, routinizing and problem solving, and adaptive coping), prevailing fear of consequences (inescapable rejection anxiety, aversion to dialysis, minimizing future morbidity, trivialization and denial, and defining acceptable risks), burdensome treatment and responsibilities (frustrating ambiguities, inadvertent forgetfulness, intrusive side effects, reversing ingrained behaviors, and financial hardship), overmedicalizing life (dominating focus, evading patienthood, and succumbing to burnout), and social accountability and motivation (demonstrating gratitude toward medical team, indebtedness to donor, and peer learning). LIMITATIONS: Non-English articles were excluded. CONCLUSIONS: Self-efficacy and social accountability are motivators for self-management, although adherence can be mentally and physically taxing. Multicomponent interventions incorporating personalized care planning, education, psychosocial support, decision aids, and self-monitoring tools may foster self-management capacity and improve transplantation outcomes.

'I feel stronger and younger all the time'-perspectives of elderly kidney transplant recipients: thematic synthesis of qualitative research.

BACKGROUND: Kidney transplantation offers improved survival and quality of life to an increasing number of elderly patients with end-stage kidney disease. However, elderly kidney transplant recipients may face unique challenges due to a higher burden of comorbidity, greater cumulative risk of immunosuppression-related complications and increasing frailty. We aimed to describe the perspectives of elderly kidney transplant recipients. METHODS: Electronic databases were searched to April 2015. Qualitative studies were eligible if they reported views from elderly kidney transplant recipients (≥60 years). Thematic synthesis was used to analyse the findings. RESULTS: Twenty-one studies involving >116 recipients were included. We identified seven themes. 'Regaining strength and vitality' meant valuing the physical and psychosocial improvements in daily functioning and life participation. 'Extending life' was the willingness to accept any organ, including extended criteria kidneys, to prolong survival. 'Debt of gratitude' entailed conscious appreciation toward their donor while knowing they were unable to repay their sacrifice. 'Moral responsibility to maintain health' motivated adherence to medication and lifestyle recommendations out of an ethical duty to protect their gift for graft survival. 'Unabating and worsening forgetfulness' hindered self-management. 'Disillusionment with side effects and complications' reflected disappointment and exasperation with the unintended consequences of medications. 'Finality of treatment option' was an acute awareness that the current transplant may be their last. CONCLUSIONS: Kidney transplantation was perceived to slow and even reverse the experience of aging among elderly recipients, especially compared with dialysis. However, some were frustrated over persistent limitations after transplant, struggled with the burden of medication side effects and worried about a possible return to dialysis if the transplant failed. Clarifying patient expectations of transplantation, providing support to alleviate the debilitating impacts of immunosuppression and addressing fears about deteriorating health and graft failure may improve satisfaction and outcomes in elderly kidney transplant recipients.

Dietary and fluid restrictions in CKD: a thematic synthesis of patient views from qualitative studies.

BACKGROUND: Managing the complex fluid and diet requirements of chronic kidney disease (CKD) is challenging for patients. We aimed to summarize patients' perspectives of dietary and fluid management in CKD to inform clinical practice and research. STUDY DESIGN: Systematic review of qualitative studies. SETTING & POPULATION: Adults with CKD who express opinions about dietary and fluid management. SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, Google Scholar, reference lists, and PhD dissertations were searched to May 2013. ANALYTICAL APPROACH: Thematic synthesis. RESULTS: We included 46 studies involving 816 patients living in middle- to high-income countries. Studies involved patients treated with facility-based and home hemodialysis (33 studies; 462 patients), peritoneal dialysis (10 studies; 112 patients), either hemodialysis or peritoneal dialysis (3 studies; 73 patients), kidney transplant recipients (9 studies; 89 patients), and patients with non-dialysis-dependent CKD stages 1 to 5 (5 studies; 80 patients). Five major themes were identified: preserving relationships (interference with roles, social limitations, and being a burden), navigating change (feeling deprived, disrupting held truths, breaking habits and norms, being overwhelmed by information, questioning efficacy, and negotiating priorities), fighting temptation (resisting impositions, experiencing mental invasion, and withstanding physiologic needs), optimizing health (accepting responsibility, valuing self-management, preventing disease progression, and preparing for and protecting a transplant), and becoming empowered (comprehending paradoxes, finding solutions, and mastering change and demands). LIMITATIONS: Limited data in non-English languages and low-income settings and for adults with CKD not treated with hemodialysis. CONCLUSIONS: Dietary and fluid restrictions are disorienting and an intense burden for patients with CKD. Patient-prioritized education strategies, harnessing patients' motivation to stay well for a transplant or to avoid dialysis, and viewing adaptation to restrictions as a collaborative journey are suggested strategies to help patients adjust to dietary regimens in order to reduce their impact on quality of life.