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  • Oxford University Press (OUP)  (4)
  • Scholes-Robertson, Nicole  (4)
  • 1
    Online Resource
    Online Resource
    Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers
    Oxford University Press (OUP) ; 2020
    In:  Nephrology Dialysis Transplantation Vol. 35, No. 11 ( 2020-11-01), p. 1949-1958
    Details
    In: Nephrology Dialysis Transplantation, Oxford University Press (OUP), Vol. 35, No. 11 ( 2020-11-01), p. 1949-1958
    Abstract: While peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients’ and caregivers’ perspectives on the meaning and role of patient empowerment in PD. Methods Adult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units in Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed. Results We identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen). Conclusions Understanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.
    Type of Medium: Online Resource
    ISSN: 0931-0509 , 1460-2385
    URL: Article
    DOI: 10.1093/ndt/gfaa127
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 1465709-0
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  • 2
    Online Resource
    Online Resource
    Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals
    Oxford University Press (OUP) ; 2020
    In:  Nephrology Dialysis Transplantation Vol. 35, No. 5 ( 2020-05-01), p. 755-764
    Details
    In: Nephrology Dialysis Transplantation, Oxford University Press (OUP), Vol. 35, No. 5 ( 2020-05-01), p. 755-764
    Abstract: Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational. Methods We conducted three workshops involving 105 patients/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease. Results We identified four themes. ‘Navigating the unknown’—patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. ‘Wary of added burden’—patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. ‘Disillusioned and disconnected’—some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed ‘Building motivation and interest’. Conclusions Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.
    Type of Medium: Online Resource
    ISSN: 0931-0509 , 1460-2385
    URL: Article
    DOI: 10.1093/ndt/gfaa044
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 1465709-0
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  • 3
    Online Resource
    Online Resource
    Perspectives on mental health among patients receiving dialysis
    Oxford University Press (OUP) ; 2021
    In:  Nephrology Dialysis Transplantation Vol. 36, No. 7 ( 2021-06-28), p. 1317-1325
    Details
    In: Nephrology Dialysis Transplantation, Oxford University Press (OUP), Vol. 36, No. 7 ( 2021-06-28), p. 1317-1325
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0931-0509 , 1460-2385
    URL: Article
    DOI: 10.1093/ndt/gfaa346
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 1465709-0
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  • 4
    Online Resource
    Online Resource
    Patient-led identification and prioritization of exercise interventions for fatigue on dialysis: a workshop report
    Oxford University Press (OUP) ; 2021
    In:  Clinical Kidney Journal Vol. 14, No. 3 ( 2021-03-23), p. 831-839
    Details
    In: Clinical Kidney Journal, Oxford University Press (OUP), Vol. 14, No. 3 ( 2021-03-23), p. 831-839
    Abstract: Fatigue is one of the most important symptoms among patients receiving dialysis and is nominated as a core outcome to be reported in all clinical trials in this setting. However, few trials of interventions targeting fatigue have been conducted. Patients historically have rarely been involved in the design of interventions, which can limit acceptability and uptake. When asked, they have indicated a preference for lifestyle interventions, such as exercise, to improve fatigue. While some research has focussed on intradialytic exercise for patients receiving haemodialysis, patients have also indicated a preference for a convenient method of exercising with guidance, but on their own time outside of dialysis hours. In response to this, a mobile phone application was proposed as the method of delivery for a home-based exercise intervention targeting fatigue. Methods We convened a workshop with five breakout group sessions in Australia, with 24 patients on dialysis (16 haemodialysis and 8 peritoneal dialysis) and 8 caregivers to identify, prioritize and discuss exercise interventions for fatigue in patients receiving dialysis and the delivery of this through a mobile application. Results Of the 21 types of exercise identified, the top-ranked were walking outdoors, walking on a treadmill and cardio and resistance training. Six themes were identified: (i) ‘an expectation of tangible gains from exercise’, including strengthening and protecting against bodily deterioration related to dialysis; (ii) ‘overcoming physical limitations’, meaning that comorbidities, baseline fatigue and fluctuating health needed to be addressed to engage in exercise; (iii) ‘fear of risks’, which reinforced the importance of safety and compatibility of exercise with dialysis; (iv) ‘realistic and achievable’ exercise, which would ensure initial readiness for uptake; (v) ‘enhancing motivation and interest’ , which expected to support sustained use of the exercise intervention and (vi) ‘ensuring usability of the mobile application’ , which would require simplicity, convenience and comprehensibility. Conclusion Exercise interventions that are expected by patients to improve health outcomes and that are safe, realistic and easy to adopt may be more acceptable to patients on dialysis.
    Type of Medium: Online Resource
    ISSN: 2048-8513
    URL: Article
    DOI: 10.1093/ckj/sfz200
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2656786-6
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