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The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study.

ABSTRACT: To explore the beliefs and expectations of patients and their caregivers about home haemodialysis in Italy where the prevalence of home haemodialysis is low.Semistructured, qualitative interview study with purposive sampling and thematic analysis.Four dialysis centres in Italy without home haemodialysis services (Bari, Marsala, Nissoria and Taranto).22 patients receiving in-centre haemodialysis and 20 of their identified caregivers.We identified seven major themes that were central to patient and caregiver perceptions of home haemodialysis in regions without established services. Three positive themes were: flexibility and freedom (increased autonomy, minimised wasted time, liberation from strict dialysis schedules and gaining self-worth); comfort in familiar surroundings (family presence and support, avoiding the need for dialysis in hospital) and altruistic motivation to do home haemodialysis as an exemplar for other patients and families. Four negative themes were: disrupting sense of normality; family burden (an onerous responsibility, caregiver uncertainty and panic and visually confronting); housing constraints; healthcare by 'professionals' not 'amateurs' (relinquishing security and satisfaction with in-centre services) and isolation from peer support.Patients without direct experience or previous education about home haemodialysis and their caregivers recognise the autonomy of home haemodialysis but are very concerned about the potential burden and personal sacrifice home haemodialysis will impose on caregivers and feel apprehensive about accepting the medical responsibilities of dialysis. To promote acceptance and uptake of home haemodialysis among patients and caregivers who have no experience of home dialysis, effective strategies are needed that provide information about home haemodialysis to patients and their caregivers, assure access to caregiver respite, provide continuous availability of medical and technical advice and facilitate peer patient support.

SUBMITTER: Tong A

PROVIDER: S-EPMC3563121 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study.

Tong Allison A Palmer Suetonia S Manns Braden B Craig Jonathan C JC Ruospo Marinella M Gargano Letizia L Johnson David W DW Hegbrant Jörgen J Olsson Måns M Fishbane Steven S Strippoli Giovanni F M GF

BMJ open 20130124 1

<h4>Objectives</h4>To explore the beliefs and expectations of patients and their caregivers about home haemodialysis in Italy where the prevalence of home haemodialysis is low.<h4>Design</h4>Semistructured, qualitative interview study with purposive sampling and thematic analysis.<h4>Setting</h4>Four dialysis centres in Italy without home haemodialysis services (Bari, Marsala, Nissoria and Taranto).<h4>Participants</h4>22 patients receiving in-centre haemodialysis and 20 of their identified care ...[more]

PMID: 23355670

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Project description:IntroductionNew technologies will be increasingly available for nursing care, including robots, patient mobilisation devices, digital event detection or prevention equipment. Technologies are expected to support nurses, increase patients' safety and reduce costs. Yet, although these technologies will significantly shape patients' experience, we need to learn more about patients' perspectives regarding new technology in care. This study aims to investigate attitudes, expectations, worries and anticipated implementation effects of new assistive technology in nursing care by patients.MethodsQualitative, guided, semi-open interviews were conducted. The recruitment was carried out in a trauma surgery ward of a university hospital in Germany. Eight different technologies were presented via video clips and additional information to the patients, followed by in-depth discussions. The interviews were analysed using qualitative evaluative content analysis. The Consolidated Criteria for Reporting Qualitative Research (COREQ) Checklist was used to ensure study quality.ResultsStudy participants anticipate different outcomes for the implementation of new nursing technology: (1) For patients, they consider the potential for improvement in health and well-being as well as for their hospital stay experience, but also fear possible health risks or social or emotional factors like loss of autonomy or loneliness. (2) For professional nurses, participants expect relief from physically stressful work routines; however, they might be replaced by machines and lose their employment (3) For the nursing process, safety and quality improvements for care delivery may encounter a negative quantification of human life and risks of constant surveillance.ConclusionPatients identify opportunities, challenges and shortcomings of nursing technology implementation. They describe nuanced and mixed accounts of patients' perspectives that are structured in a 'continuum of anticipated effects' of implementing technology in our article. The results can inform future implementation strategies.

Project description:BackgroundWhen discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients' quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers' treatment expectations.MethodsA prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients' treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy - General questionnaire. Family caregivers' treatment expectations were assessed once.ResultsA total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04).ConclusionThis study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.

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The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study.

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The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study.

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