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1.
J Vasc Nurs ; 42(2): 83-88, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38823976

RESUMO

INTRODUCTION: An evidence-based approach is essential in the treatment of wounds to optimise healing, reduce costs and improve patient outcomes. AIM: This case study aimed to demonstrate our model of care, which assesses and manages patients with venous disease and complex wounds. In this case, venous leg ulcer (VLU) was treated with TLC-NOSF dressing and therapeutic compression. The wound was serially assessed using a smart App that gave the patient a graphic representation of their progress. DESIGN: Descriptive Observational Case Study. CLINICAL CARE: An evidence-based approach for managing a chronic, severe VLU. The patient was initially seen at the Outpatient Vascular Wound Clinic twice weekly, then every two weeks for conservative sharp wound debridement, skin care, dressing change, and compression therapy using a compression (Ready) wrap. Wound progress was monitored by the digital application 'Tissue Analytics', a "purposedesigned digital wound management platform that records, tracks, and analyses wounds". RESULTS: Week 1: On initial review, ulcer length was 3.15cm, width was 3.1 cm, and total surface area was 6.31 cm2. The wound base was mildly sloughy (<25%), with areas of good granulation tissue on view. Week 12: Length was 1.32 cm, width 1.50 cm, and total surface area of 1.45 cm2, a 77% reduction in wound size. Week 24: The length was 0.48 cm, the width was 0.64 cm, and the total surface area was 0.18 cm2. This represented a 97% reduction in wound size. Week 36: Length was 0.01 cm, the width 0.06 cm, with a total surface area of 0.00 cm2. This represented a 99.99% reduction in wound size. CONCLUSION: The patient's treatment for a complex venous leg ulcer included the application of TLC-NOSF dressing in combination with individualised therapeutic compression therapy. We found TLC-NOSF was very effective in combination with the best standard of VLU care (i.e. therapeutic graduated compression therapy). The clinician and patient were impressed with the healing rate at 12 weeks, as the wound dimensions were the lowest since the wound started six years ago. This dramatically improved patient concordance and engagement in care. Despite incomplete healing at 36 weeks, the wound-healing journey over the 36 weeks indicated wound closure was close. In addition, using a wound assessment App, the patient could immediately see the benefits of the new treatment, facilitating patient compliance with the treatment.


Assuntos
Úlcera Varicosa , Cicatrização , Humanos , Úlcera Varicosa/terapia , Bandagens Compressivas , Desbridamento/métodos , Masculino , Feminino , Higiene da Pele/enfermagem , Higiene da Pele/métodos , Idoso , Bandagens
2.
J Vasc Nurs ; 42(1): 65-73, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38555180

RESUMO

INTRODUCTION: Chronic limb threatening ischaemia causes pain, loss of function and complex wounds, necessitating urgent interventions. While growing options for minimally invasive revascularisation make operating on frail and older persons safer, the challenge is knowing when to stop this option and offer amputation. Decisions about amputation are difficult for the person, or for the family who act as substitute decision-makers. Timely treatment decisions are important to optimise clinical outcomes but do not always align with outcomes that are acceptable to patients. AIM: To provide a philosophically-based understanding of patient/family experiences of making decisions for chronic limb threatening ischaemia. METHODS: Longitudinal qualitative study using Heideggerian phenomenology. Patient and family participants were recruited from three sites. Semi-structured interviews occurred at two time points: soon after advice to consider major amputation, and for those who experienced amputation, six-months post-operatively. The COnsolidated criteria for REporting Qualitative studies (COREQ) checklist guided this report. FINDINGS: Variable timelines, disease progression, and interventions were encountered prior to confronting the possibility of amputation. Decision-making was interpreted as an initial irresoluteness (neglecting or renouncing decisions). For most, this was eventually followed by a resoluteness where participants either turned away or towards amputation, according to one's preferred mode of suffering, and thus owning the decision to turn. Those who opted for amputation often experienced better-than-anticipated outcomes. CONCLUSION: Patients and families had difficulty making decisions about amputation. Clinicians may have been complicit in the neglecting and renouncing of decisions and have an important role in sharing decision-making through their authentic discourse. IMPLICATIONS: Chronic limb threatening ischaemia requires complex discussions to support decisions and shared decision-making requires clinician presence and engagement in discourse. Patients and family members benefit from more time to experience and process the phenomenon as they move towards owning their decision about amputation.


Assuntos
Amputação Cirúrgica , Isquemia Crônica Crítica de Membro , Humanos , Idoso , Idoso de 80 Anos ou mais , Procedimentos Cirúrgicos Vasculares , Fatores de Tempo , Pesquisa Qualitativa , Isquemia/cirurgia
4.
J Vasc Nurs ; 41(3): 147-148, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37684093
5.
J Clin Nurs ; 32(17-18): 6559-6573, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36788640

RESUMO

AIMS AND OBJECTIVES: To explore the notion of Being-with and authentic discourse for people making decisions about major amputation. BACKGROUND: Chronic limb-threatening ischaemia is a devastating disease with a high burden of pain and complex wounds. Patients may deteriorate suddenly after multiple revascularisation procedures and, amputation is offered when further reperfusion is considered futile. Delayed decisions about amputation have negative consequences for patients, families and health systems, yet little attention is given to training clinicians for the sophisticated communication required. Clinicians need to engage in authentic discourse about amputation to create shared meaning and facilitate decision-making. DESIGN: Qualitative study using hermeneutic Heideggerian phenomenology. METHODS: Twelve patients offered major amputation, and 13 family participants from three vascular units in Australia engaged in 42 semi-structured interviews, representing 19 cases of chronic limb-threatening ischaemia. Hermeneutic phenomenology using the Heideggerian tenet of Being-with as an analytic framework, a philosophically based understanding of Being-with and Discourse related to treatment discussions and decisions was derived. The research was reported in accordance with the COREQ checklist. FINDINGS: Effective discourse between the person and family was hampered by changed circumstances of Being-with, characterised by guilt, and a retreat from discourse through deficient discourse and filtering information. Clinician Being-with was hampered by discourse that was deficient, poorly delivered, discordant and disconnected through a lack of empathetic listening. There were also examples of enhanced clinician Being-with that made room for more constructive discourse and more timely decisions about amputation. CONCLUSIONS: Heidegger's construct of Being-with provides a useful framework to reveal the role of authentic discourse in improving patient and family experience and decisions about treatment. NO PATIENT OR PUBLIC CONTRIBUTION: This study did not engage consumers other than as patient and carer participants. RELEVANCE TO CLINICAL PRACTICE: Decisions about amputation are often difficult for patients or family members who may be substitute decision-makers. A better understanding of the experience may assist clinicians in their interactions with patients and families.


Assuntos
Cuidadores , Isquemia Crônica Crítica de Membro , Humanos , Pesquisa Qualitativa , Hermenêutica , Amputação Cirúrgica
6.
BMJ Open ; 12(6): e058152, 2022 06 03.
Artigo em Inglês | MEDLINE | ID: mdl-36691241

RESUMO

INTRODUCTION: The experiences of patients from culturally and linguistically diverse backgrounds, with chronic mental illness, disabilities or who identify as sexual or religious minorities are under-represented in clinical research on arteriovenous fistula (AVF) for haemodialysis access. A greater understanding of the experiences, values and concerns of these diverse patient groups are needed to provide haemodialysis access care that addresses the needs of all haemodialysis-dependent patients. This study seeks to describe a broad range of patient experiences related to the creation, care and surveillance of AVFs, including interactions with healthcare teams. METHODS AND ANALYSIS: This qualitative study will use semistructured interviews with individual patients purposefully selected to provide a diverse patient population. A deliberate strategy will be used to recruit a demographically broad range of participants. Thematic analysis of interview transcripts, using a constant comparative methodology, will generate themes that describe patient experiences, values and concerns. Findings from this study will give a nuanced insight into the experiences of patients on haemodialysis with respect to their AVF. ETHICS AND DISSEMINATION: Ethical approval for this study was provided by the Sydney Local Health District Human Research Ethics Committee (REGIS identifier: 2021/ETH00362, CH reference number: CH62/6/2021-033). Results will be made available to the participants, local health district, funders and other researchers through various hospital and academic forums. Data will also be published in peer-reviewed journals and be part of a larger body of work looking into patient-reported outcome measures for patients with AVF.


Assuntos
Fístula Arteriovenosa , Diálise Renal , Humanos , Diálise Renal/métodos , Austrália , Pesquisa Qualitativa , Grupos Minoritários
7.
Contemp Nurse ; 57(3-4): 224-234, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34623222

RESUMO

The interplay of frailty, multimorbidity and polypharmacy in the older person results in complex care needs. Monitoring and proactive management of chronic diseases in this context can be challenging. Early identification of deterioration reduces the risk of hospitalisation in older people, particularly in residential care, where the person can be particularly vulnerable. Deterioration of a resident often results in an expectation of in-hospital care, which especially where there are life-limiting conditions, may not align to the wishes of the person and their family. However, links between tertiary hospital services with the expertise to upskill and mentor those providing the more complex care to residents of aged care facilities need to be developed. Current models of care need to be adapted to incorporate the provision of specialist nursing within residential facilities to support higher-level care delivered in the person's familiar environment, improve the person and family experience, and reduce the costs and potential for iatrogenic problems associated with hospitalisation. Vascular dysfunction is common in aged care and results in impaired healing and complex wounds. We developed a Vascular and Geriatric (VaG) model of care to support specialist care for aged care residents with vascular dysfunction. The VaG model enhances existing links between hospital and residential care settings and builds workforce capacity in residential care facilities by the use of clinical consultation, peer learning and networking to increase the vascular skill set initially of the hospital outreach nurse and then modelled to residential care clinicians. This paper reports the development and implementation of the VaG model as part of the Aged Care Outreach Service.


Assuntos
Moradias Assistidas , Papel do Profissional de Enfermagem , Idoso , Hospitalização , Hospitais , Humanos
8.
J Clin Nurs ; 30(9-10): 1295-1311, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33506537

RESUMO

AIMS AND OBJECTIVES: To explore patient experience of chronic wound care across diverse models of outpatient wound care delivery. BACKGROUND: Chronic wounds represent a significant personal, family and healthcare system burden. Evidence suggests specialist wound clinics are more effective and less expensive, however, most outpatient wound care is delivered by general community nurses. There is little understanding of how patients experience diverse models of wound care delivery and the subsequent impact on their capacity to adapt to imbalances in their internal/external environment. DESIGN: Descriptive, qualitative study. METHODS: Eighteen patients with chronic wounds from three wound services were engaged in semi-structured interviews. Initial inductive analysis was refined deductively using Levine's Conservation Model. RESULTS: Chronic wounds lead to imbalances and subsequent adaptions in energy conservation and personal, social and structural integrity. Nursing process and wound care system responses suggest specialist wound clinics provide access to the right person and care at the right time, with less care variation. The community nursing model is most effective with a small team of nurses and a documented care plan, with specialist wound nurse oversight. Residential aged care facilities emerged as important sites for wound care delivery revealing higher variance in care and less specialist wound oversight. CONCLUSIONS: The application of Levine's conservation model provides a theoretical understanding and important insights into the patient experience of nurse and system elements across diverse models of wound care delivery. Specialist oversight by expert wound nurses with the capacity for medical specialist referral is the cornerstone of good wound care. A frequently reviewed wound care plan and skill development for nurses in primary, aged care and community settings are vital. RELEVANCE TO CLINICAL PRACTICE: Shared care between specialist and primary care should include evidence-based pain assessment, clear referral pathways, collaborative relationships, telehealth capacity, patient-held wound plans and upskilling of frontline clinicians.


Assuntos
Modelos de Enfermagem , Processo de Enfermagem , Idoso , Atenção à Saúde , Humanos , Pesquisa Qualitativa
9.
J Clin Nurs ; 30(5-6): 687-700, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33290625

RESUMO

INTRODUCTION: The possibility of amputation and/or death from chronic limb-threatening ischaemia (CLTI) is real, and deeper understandings of the person and family's capacity and preparedness for limb loss and clinical interventions (active or palliative) are required. BACKGROUND: The lead-in period to the surgeon's recommendation for amputation for CLTI may be sudden or protracted; the number/invasiveness of previous revascularisation interventions varies, and limb loss and end-of-life considerations frame the experience. METHOD: This prospective, longitudinal, interpretative phenomenological study in three vascular surgical units involved 19 CLTI journeys. Participants were interviewed when making decisions about amputation (15 patients, 12 family members) and, where applicable, 6-months postamputation (8 patients, 7 family members). Hermeneutic interpretation using Heidegger's philosophical construct of Being-towards-death guided the analysis. The COREQ checklist ensured rigour in research reporting. FINDINGS: Some participants were unable to face the possibility of death and metaphorically 'fled', either through productive optimism or through hoping for more time (Heidegger's inauthentic positioning towards death). For others, authentic positionings of Being-towards-death were understood as: the confrontation of the certainty of their death by making choices about how to die; the indefiniteness of death where treatment choices influenced timing, yet the time for death remained unknown; the nonrelational nature of death, as the journey could only be lived by the person; and death as not to be outstripped, where for some, there was a freeing of oneself for amputation and/or death. DISCUSSION: The term 'end of limb' to denote the futility of the limb is a useful marker that emphasises the noncurative nature of CLTI. This may help to instigate and support discussions about end of life to support palliation care planning and the person and family's existential preparation for death. CONCLUSION: Death frames the experience of CLTI. Using 'end-of-limb' and 'end-of-life' terminology may facilitate a family/patient-centred approach to possible amputation and other conservative or palliative strategies. RELEVANCE TO CLINICAL PRACTICE: Understanding of CLTI illness experience. Decisions about revascularisation, amputation or conservative care. End-of-life care for CLTI.


Assuntos
Doença Arterial Periférica , Amputação Cirúrgica , Doença Crônica , Humanos , Isquemia , Estudos Prospectivos , Fatores de Risco , Resultado do Tratamento , Procedimentos Cirúrgicos Vasculares
11.
J Clin Nurs ; 29(7-8): 1276-1289, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31880355

RESUMO

AIMS AND OBJECTIVES: To explore person and family lifeworld narratives of chronic limb-threatening ischaemia (CLTI) after major amputation has been offered as a treatment option. BACKGROUND: Chronic limb-threatening ischaemia manifests as ischaemic pain, ulceration and/or gangrene and is receiving heightened attention due to the increasing health system burden from associated complex wounds and hospitalisations for repeat procedures. The patient and family impact of these manifestations is not well-reported: current studies largely seek to measure treatment outcomes. Patient-reported outcome measurements need to be developed but should be underpinned by rigorous qualitative research. DESIGN: Prospective, longitudinal, qualitative design using interpretive phenomenology. METHODS: The journeys of 19 people with CLTI were explored via 42 semi-structured interviews with 14 patient and 13 family participants. The initial interview was conducted soon after the advice of the need for major amputation, and where amputation followed, participants were invited for a second interview 6 months postprocedure. Hermeneutic phenomenological analysis was guided by Merleau-Ponty's philosophy of embodiment. RESULTS: People with embodied CTLI faced an existential crisis due to the catastrophic impact of creeping decay of their flesh and vascular system, relentless pain and a sense of spreading poison from gangrene, infection and drugs, which disrupted the interleaving of the physical and existential body. Consequent to the creeping decay and surgery, participants also experienced shifting body boundaries and an unreliable body. CONCLUSIONS: The lifeworld of the patient and family living with CTLI is irrevocably altered through the disruption of a spontaneous and reliable body. This shapes subsequent therapeutic relationships and discourse. RELEVANCE TO CLINICAL PRACTICE: People facing CLTI require early patient- and family-centred discussions about the possibility for major amputation and its potential to arrest the further decline of the body and to support the body's existential expression.


Assuntos
Amputação Cirúrgica/psicologia , Extremidades/irrigação sanguínea , Isquemia/psicologia , Doenças Vasculares Periféricas/psicologia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Família/psicologia , Feminino , Humanos , Isquemia/etiologia , Isquemia/cirurgia , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Doenças Vasculares Periféricas/complicações , Doenças Vasculares Periféricas/cirurgia , Estudos Prospectivos , Pesquisa Qualitativa
12.
J Clin Nurs ; 27(19-20): 3530-3543, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29776002

RESUMO

AIMS AND OBJECTIVES: To illuminate the hospital experience for patients and families when major amputation has been advised for critical limb ischaemia (CLI). BACKGROUND: CLI creates significant burden to the health system and the family, particularly as the person with CLI approaches amputation. Major amputation is often offered as a late intervention for CLI in response to the marked deterioration of an ischaemic limb, and functional decline from reduced mobility, intractable pain, infection and/or toxaemia. While a wealth of clinical outcome data on CLI and amputation exists internationally, little is known about the patient/family-centred experience of hospitalisation to inform preservation of personhood and patient-centred care planning. DESIGN: Longitudinal qualitative study using Heideggerian phenomenology. METHODS: Fourteen patients and 13 family carers provided a semistructured interview after advice for major amputation. Where amputation followed, a second interview (6 months postprocedure) was provided by eight patients and seven family carers. Forty-two semistructured interviews were audio-recorded and transcribed verbatim. Hermeneutic phenomenological analysis followed. RESULTS: Hospitalisation for CLI, with or without amputation, created a sense of chaos, characterised by being fragile and needing more time for care (fragile body and fragile mind, nurse busyness and carer hypervigilance), being adrift within uncontrollable spaces (noise, unreliable space, precarious accommodation and unpredictable scheduling) and being confused by missed and mixed messages (multiple stakeholders, information overload and cultural/linguistic diversity). CONCLUSIONS: Patients and families need a range of strategies to assist mindful decision-making in preparation for amputation in what for them is a chaotic process occurring within a chaotic environment. Cognitive deficits increase the care complexity and burden of family advocacy. RELEVANCE TO CLINICAL PRACTICE: A coordinated, interprofessional response should improve systems for communication, family engagement, operation scheduling and discharge planning to support preparation, adjustment and allow a sense of safety to develop. Formal peer support for patients and caregivers should be actively facilitated.


Assuntos
Amputação Cirúrgica/psicologia , Extremidades/irrigação sanguínea , Hospitalização , Isquemia/psicologia , Isquemia/cirurgia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Resultado do Tratamento
14.
J Vasc Nurs ; 35(2): 49-56, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28527727

RESUMO

INTRODUCTION: Despite improvements in revascularization, major amputation remains a significant part of the case-mix in vascular surgical units. These patients tend to be elderly with complex pathology, resulting in poor outcomes and longer lengths of stay (LOS). AIM: This series review provides a description of the patient complexities and outcomes in an Australian cohort undergoing major lower limb amputation for peripheral arterial disease. METHOD: Medical records coded for major amputation between July 2012 and June 2013 in an Australian government funded, tertiary hospital were retrospectively reviewed and descriptively analyzed. FINDINGS: Twenty-five patients had 29 major amputations including four conversions from below to above knee. Seventeen had multiple vascular procedures before amputation. The average LOS exceeded the national target, and there was substantial morbidity and 30-day mortality. CONCLUSION: Major amputation continues to present challenges because of patient frailty and the high rate of complications. These issues need to be considered in a robust care planning framework that includes consideration of cognitive decline and other markers of frailty. Opportunities to optimize the physical condition of these patients and to reduce delays in proceeding to surgery require further investigation.


Assuntos
Amputação Cirúrgica , Perna (Membro)/irrigação sanguínea , Perna (Membro)/cirurgia , Doença Arterial Periférica/cirurgia , Idoso , Idoso de 80 Anos ou mais , Austrália , Feminino , Idoso Fragilizado , Humanos , Tempo de Internação , Masculino , Doença Arterial Periférica/epidemiologia , Complicações Pós-Operatórias , Reoperação , Taxa de Sobrevida , Resultado do Tratamento
15.
J Clin Nurs ; 26(21-22): 3382-3395, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28001331

RESUMO

AIMS AND OBJECTIVES: To interpret the spatio-temporal experience of people with end-stage kidney disease and their families in the first months of haemodialysis. BACKGROUND: While dialysis is the mainstay of end-stage kidney disease management, the actual initiation of treatment is often unexpected by people and families. Poor biopsychosocial preparation means haemodialysis commencement is experienced as a crisis. While previous phenomenological studies suggest that over time, a habitual incorporation of dialysis into one's self-concept is possible, the spatio-temporal experience of people new to haemodialysis is not well understood. DESIGN: A phenomenological study. METHODS: Following purposive sampling, 18 participants were recruited either during an inpatient admission or while attending a public hospital-based haemodialysis unit in Sydney, Australia. Eleven people who had commenced haemodialysis within the previous three months and five close family members were separately engaged in semistructured interviews. Hermeneutic interpretation within a Heideggerian framework occurred through a backward-and-forward analysis between the early haemodialysis experience and its relationship to Being. RESULTS: Themes that related to a temporal and spatial understanding of Being-in-the-world as a new haemodialysis patient or carer included the following: 'compartmentalising life into dialysis and non-dialysis days' (lost time, clock time and lived time); 'compartmentalising before, now and future' (normalising the 'before', dealing with the 'now' and the 'foreverness' of dialysis); and finally, 'compartmentalising space'. CONCLUSIONS: In the months after dialysis commencement, patients and family carers compartmentalise time and space with a loss of continuity of meaningful, lived time that had framed people's past sense of normal. RELEVANCE TO CLINICAL PRACTICE: Resource enhancement activities should focus on social connectivity and provision of personnel and/or infrastructure to reduce boredom, to facilitate engagement with meaningful tasks and, where appropriate, to support the continuation of work activities during the dialysis period.


Assuntos
Adaptação Psicológica , Família/psicologia , Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Adulto , Idoso , Austrália , Feminino , Humanos , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Fatores de Tempo
16.
J Clin Nurs ; 26(19-20): 2826-2844, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27808440

RESUMO

AIMS AND OBJECTIVES: To examine the domains and the domain-specific characteristics within a peripheral arterial disease health-related quality of life framework for their usefulness in defining critical limb ischaemia health-related quality of life. BACKGROUND: Critical Limb Ischaemia presents a highly individualised set of personal and health circumstances. Treatment options include conservative management, revascularisation or amputation. However, the links between treatment decisions and quality of life require further investigation. DESIGN: The framework for this integrative review was the peripheral arterial disease-specific health-related quality of life domains identified by Treat-Jacobson et al. RESULTS: The literature expanded and refined Treat-Jacobson's framework by modifying the characteristics to better describe health-related quality of life in critical limb ischaemia. CONCLUSIONS: Given that critical limb ischaemia is a highly individualised situation with powerful health-related quality of life implications, further research focusing on patient and family-centred decision-making relating to therapeutic options and advanced care planning is required. RELEVANCE TO CLINICAL PRACTICE: A critical limb ischaemia-specific, health-related quality of life tool is required to capture both the unique characteristics of this disorder, and the outcomes for active or conservative care among this complex group of patients.


Assuntos
Extremidades/irrigação sanguínea , Isquemia/psicologia , Doenças Vasculares Periféricas/psicologia , Qualidade de Vida , Humanos , Isquemia/enfermagem , Doenças Vasculares Periféricas/enfermagem
17.
J Clin Nurs ; 23(21-22): 3262-73, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24810661

RESUMO

AIMS AND OBJECTIVES: To describe the essence of the lived experience of patients and families in the early phase of long-term haemodialysis therapy. BACKGROUND: Past qualitative research has taken a long-term view describing established haemodialysis therapy as it impacts on physical limitations and changes in self-concept, psychosocial well-being and sense of dignity with subsequent consequences for family roles and financial status. DESIGN: This study used the qualitative approach of Heideggerian phenomenology. METHODS: Eleven patients with end-stage kidney disease who had recently initiated haemodialysis and five family carers engaged in semi-structured interviews. These were recorded and transcribed verbatim and analysed using an hermeneutic framework. RESULTS: The essence of the early dialysis experience was a 'lost life', and participants were overwhelmed by shock and grief. This appeared to result from a lack of mental and physical preparation for dialysis as a long-term management strategy. A loss of sense of self, loss of spontaneity and personal freedom and loss of social connectedness challenged the participants' ability to contribute to family and community. Changed body sensations ranged from improved wellness to a sense of depletion and fatigue. Family caregivers found the caring role was unremitting and required intense vigilance. CONCLUSIONS: Patients and family members in the early phase of dialysis may have difficulty perceiving a positive future. RELEVANCE TO CLINICAL PRACTICE: A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during haemodialysis and support groups for patients and family should be actively facilitated.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Falência Renal Crônica/terapia , Diálise Renal/psicologia , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Falência Renal Crônica/enfermagem , Masculino , Pessoa de Meia-Idade , Qualidade de Vida
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