Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study

ABSTRACTWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.

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Uptake and Scalability of a Peritoneal Dialysis Virtual Care Solution: Qualitative Study (Preprint)

10.2196/preprints.9720 ◽

2017 ◽

Author(s):

Lianne Jeffs ◽

Trevor Jamieson ◽

Marianne Saragosa ◽

Geetha Mukerji ◽

Arsh K Jain ◽

...

Keyword(s):

Peritoneal Dialysis ◽

Health Care Providers ◽

Decision Makers ◽

Care Providers ◽

Factors Influencing ◽

Virtual Care ◽

Key Stakeholders ◽

Hands On ◽

Semistructured Interviews ◽

At Home

BACKGROUND Early research in the area of virtual care solutions with peritoneal dialysis (PD) patients has focused on evaluating the outcomes and impact of these solutions. There has been less attention focused on understanding the factors influencing the uptake, usability, and scalability of virtual care for chronic kidney disease (CKD) patients receiving PD at home. OBJECTIVE In this context, a study was undertaken to (1) assess and understand the factors influencing the uptake of a virtual care solution and (2) provide recommendations for the scalability of a virtual care solution aimed at enhancing CKD patients’ outcomes and experiences. METHODS This study used a qualitative design with semistructured interviews and a thematic analysis approach. A total of 25 stakeholders—6 patients and 3 caregivers, 6 health care providers, 2 vendors, and 8 health system decision makers—participated in this study. RESULTS The following three primary mechanisms emerged to influence the usability of the virtual care solution: (1) receiving hands-on training and ongoing communication from a supportive team, (2) adapting to meet user needs and embedding them into workflow, and (3) being influenced by patient and caregiver characteristics. Further, two overarching recommendations were developed for considerations around scalability: (1) co-design locally, embed into the daily workflow, and deploy over time and (2) share the benefits and build the case. CONCLUSIONS Study findings can be used by key stakeholders in their future efforts to enhance the implementation, uptake, and scalability of virtual care solutions for CKD and managing PD at home.

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Development of an instrument to assess self-management capacity of patients receiving peritoneal dialysis: CAPABLE

Peritoneal Dialysis International ◽

10.1177/08968608211059897 ◽

2021 ◽

pp. 089686082110598

Author(s):

Martha Devia ◽

Jasmin Vesga ◽

Ricardo Sanchez ◽

Rafael M Sanabria ◽

Ana Elizabeth Figueiredo

Keyword(s):

Peritoneal Dialysis ◽

The Self ◽

Basic Knowledge ◽

Self Management ◽

Second Phase ◽

Early Evaluation ◽

Management Capacity ◽

Preliminary Version ◽

Bibliographic Search ◽

At Home

Background: Treatment of kidney failure with peritoneal dialysis (PD) at home implies that the patient and/or their caregiver develop a series of skills and basic knowledge about this therapy. There is not a specific inventory of the patient’s abilities to safely perform the PD procedure at home. The objective of this study was to describe the development of an instrument that allows measuring the self-management capacity of patients receiving PD, locating the performance areas that justify the need for intervention by a caregiver. Methods: This is a qualitative study developed in three phases: The first phase was the identification of performance areas through bibliographic search and validation of the results with focus groups of experts in PD. The second phase was the design of a system to measure self-management capacities. The third phase was a pilot test of the preliminary version of the instrument applied in 20 incident PD patients. Results: Three domains were identified to evaluate the fundamental components of self-management capacity: cognitive and sensory, each one evaluated with four items and motor domain evaluated with eight items. After applying the instrument, we found that 15 patients (75%) did not require support from the caregiver in any of the items. PD patients and nurses found the tool valuable, easy to understand and applicable in the early evaluation of a PD patient. Conclusions: We developed an easy-to-administer instrument to measure the self-management capacity of patients receiving PD. This inventory could locate areas that require specific support from a caregiver. Planning an individualised and focused education and training process could result in better health outcomes.

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New Connections, Familiar Settings: Issues in the Ethnographic Study of New Media Use at Home

Virtual Methods : Issues in Social Research on the Internet ◽

10.5040/9781474215930.ch-009 ◽

2014 ◽

Keyword(s):

New Media ◽

Media Use ◽

Ethnographic Study ◽

At Home

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Feel at Home. Vietnamese Immigrants in Poland

Space and Culture ◽

10.1177/1206331219884499 ◽

2019 ◽

pp. 120633121988449

Author(s):

Agnieszka Brzozowska ◽

Agnieszka Postuła

Keyword(s):

Direct Observation ◽

Home Country ◽

Ethnographic Study ◽

Vietnamese Immigrants ◽

At Home

In this paper, we develop the concept of home, presenting an example of Vietnamese entrepreneurs running their business in Poland. This subject is peculiar to the perspective of immigrants, who have already left their home country and need to establish themselves in a new place. We base our study on material gathered from four sources: a broad ethnographic study, non-participant and direct observation of Vietnamese places in Poland, photographs taken in Poland and Vietnam, and interviews. We argue that the concept of home is extremely broad and is represented by immigrants in diverse ways. After our analysis, we propose a deeper understanding of the activities of immigrants and their ways of acculturation.

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eHealth interventions to support patients in delivering and managing peritoneal dialysis at home: A systematic review

Peritoneal Dialysis International ◽

10.1177/0896860820918135 ◽

2020 ◽

pp. 089686082091813

Author(s):

Emma J Cartwright ◽

Zack ZS Goh ◽

Marjorie Foo ◽

Choong M Chan ◽

Htay Htay ◽

...

Keyword(s):

Peritoneal Dialysis ◽

Meta Analysis ◽

Active Engagement ◽

Management Skills ◽

Accessible Information ◽

Disease Mortality ◽

Core Outcomes ◽

Main Component ◽

At Home

Peritoneal dialysis (PD) requires patients to develop a variety of self-management skills in order to effectively deliver and manage their dialysis at home. eHealth interventions may provide patients with accessible information to develop the skills and knowledge they require to manage their treatment. This review aims to identify and evaluate ‘active’ eHealth interventions in supporting patients on PD. Six databases were included within the review using the terms Peritoneal Dialysis, eHealth, telemedicine and remote consultation. Studies which explored patients who were delivering PD, an intervention where the main component involved a digital device and required active engagement from patients were included. The primary outcomes examined were identified using the core outcomes recommended by the Standardised Outcomes in Nephrology in Peritoneal Dialysis initiative (PD infection, cardiovascular disease, mortality, PD failure and life participation). Hospitalisation rates were also considered as a primary outcome. Secondary outcomes included quality of life, patient skills, patient knowledge and satisfaction. Using the inclusion criteria, 15 studies (1334 participants) were included in the study. The effectiveness of eHealth interventions was mixed. Due to high heterogeneity, a meta-analysis was not possible, and quality of evidence was low. Risk of bias across the randomised studies was unclear but bias across non-randomised studies was identified as critical. There were no reported adverse effects of eHealth interventions within the included studies. Despite the high interest of eHealth interventions in PD, good quality evidence is needed to explore their effectiveness before a wider application of eHealth interventions.

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VIVÊNCIA DO FAMILIAR NA QUALIDADE DE CUIDADOR RESPONSÁVEL PELA DIÁLISE PERITONEAL DOMICILIAR: BASEADO NA TEORIA DO AUTOCUIDADO / EXPERIENCE OF THE FAMILY MEMBER AS THE CAREGIVER RESPONSIBLE FOR PERITONEAL DIALYSIS AT HOME: BASED ON THE THEORY OF SELF-CARE

Brazilian Journal of Development ◽

10.34117/bjdv6n10-200 ◽

2020 ◽

Vol 6 (10) ◽

pp. 76809-76827

Author(s):

Tamires de Nazaré Soares ◽

Kamille Giovanna Gomes Henriques ◽

Milene Gouvêa Tyll ◽

Amanda Christina Monteiro Souza ◽

Eliette Assunção e Silva ◽

...

Keyword(s):

Peritoneal Dialysis ◽

Family Member ◽

Self Care ◽

Home Based ◽

The Family ◽

At Home

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Correction to: Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare

Social Psychiatry and Psychiatric Epidemiology ◽

10.1007/s00127-021-02165-y ◽

2021 ◽

Author(s):

Monica Leverton ◽

Alexandra Burton ◽

Jules Beresford-Dent ◽

Penny Rapaport ◽

Jill Manthorpe ◽

...

Keyword(s):

Ethnographic Study ◽

At Home

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Examining the Perspectives of Family Members Involved in the Delivery of Palliative Care at Home

Journal of Palliative Care ◽

10.1177/082585970301900106 ◽

2003 ◽

Vol 19 (1) ◽

pp. 27-35 ◽

Cited By ~ 90

Author(s):

Kelli I. Stajduhar

Keyword(s):

Health Care ◽

Palliative Care ◽

Home Health Care ◽

Ethnographic Study ◽

Health Care Reforms ◽

Home Setting ◽

Home Based ◽

Field Notes ◽

Dying At Home ◽

At Home

This ethnographic study examined the social context of home-based palliative caregiving. Data were composed of observation field notes, interviews, and textual documents, and were analyzed using constant comparative methods. Findings show that home-based palliative caregiving resulted in life-enriching experiences for many caregivers. However, assumptions about dying at home and health care reforms resulted in some caregivers feeling “pressured” to provide home care, and consequently, left them feeling their obligations to care were exploited by the health care system. Shifts toward providing care closer to home not only changed caregivers, but also changed the home setting where palliative care was provided. Findings indicate a need for interventions designed to improve support for caregivers at home, and to explore how assumptions influence and sometimes drive the provision of home health care.

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