Suspended Life Pattern: A Qualitative Study on Personal Life Among Family Caregivers of Hemodialysis Patients in Iran

Ebadi, Abbas; Sajadi, Seyedeh Azam; Moradian, Seyed Tayeb; Akbari, Roghayeh

doi:10.1177/0272684x18773763

Cited by 17 publications

(43 citation statements)

References 26 publications

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“…We suggest that Thompson's () framework focusing on components may also be applied to the next of kin. Ebadi et al () called for improved interaction among professional caregivers to understand the conditions of the next of kin, thereby improving the quality of life for both patients and their families.…”

Section: Discussionmentioning

confidence: 99%

“…These symptoms were more prominent in female spouses (Liedstrom et al, 2014). Ebadi, Sajadi, Moradian, & Akbari (2018) found that the next of kin of patients undergoing haemodialysis experienced unpredictable, uncontrollable stressors such as time conflicts between caregiving and occupational affairs, care-induced fatigue and fear of the future. Aasen et al (2011) showed that the next of kin of elderly patients on HD felt excluded and forgotten by health providers.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…Ebadi et al (2018) called for improved interaction among professional caregivers to understand the conditions of the next of kin, thereby improving the quality of life for both patients and their families.…”

mentioning

confidence: 99%

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Patient participation in the clinical pathway—Nurses’ perceptions of adults’ involvement in haemodialysis

et al. 2019

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Aim To develop knowledge of nurses’ perceptions of participation for patients treated with haemodialysis and their next of kin. Design A qualitative study with a hermeneutic approach. Methods The data were collected in 2015 through focus groups with 13 nurses in Central Norway. Results The nurses reported that patient participation ranging from non‐involvement to shared decision‐making was related to whether dialysis was initiated as acute or scheduled. The restrictions required in chronic haemodialysis limited participation. The next of kin were not involved. The nurses highlighted interventions on both the individual and system levels to strengthen participation. Conclusion Dialysis units should develop strategies for participation related to individual needs and design treatment in cooperation with patients and their families, ensuring involvement early in the clinical pathway. Further research is needed on issues related to next of kin, including their desired level of involvement.

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Section: Discussionmentioning

confidence: 99%

Section: Backg Rou N Dmentioning

confidence: 99%

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Patient participation in the clinical pathway—Nurses’ perceptions of adults’ involvement in haemodialysis

et al. 2019

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“…The breadth of care required for a patient with ESKD causes the caregiver to be more vulnerable to emotional, physical, and psychological consequences, which are essentially greater in countries with more limited resources (3). The complications in caring for a patient receiving hemodialysis aggravate depression and reduce the quality of life of the caregiver (4). The burden on the caregiver directly affects the quality of care provided by them and may lead to inadequate care or even the abandonment of patient (5).…”

Section: Introductionmentioning

confidence: 99%

“…Admittedly, caregivers and families of patients receiving hemodialysis have not been well understood, and what has been in the spotlight was primarily the patient receiving hemodialysis, not his or her caregiver. Limited studies have looked at the personal lives of caregivers of these patients (4). In one qualitative study, caregivers of patients receiving hemodialysis suffered from burden which formed four categories: care challenge, psychological vulnerabilities, the chronic nature of care and care in the shade.…”

Section: Introductionmentioning

confidence: 99%

Caregiver Burden in Caregivers of Patients Receiving Hemodialysis: A Qualitative Study

Hejazi¹,

Hosseini²,

Ebadi³

et al. 2020

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Background Living with End Stage Kidney Disease and hemodialysis place too much burden on patients and their caregivers. The concept of caregiver burden describes a set of diverse caregiver experiences in providing care and requires a complex and multifaceted definition. Limited studies have looked at caregivers of patients receiving hemodialysis and the concept of caregiver burden from their perspective. This study aims to develop the concept of caregiver burden among family caregivers of patients receiving hemodialysis.Method This study was conducted using directed qualitative content analysis method. Twenty one family caregivers, patients, dialysis nurses, physicians, and social workers in teaching hospitals of Tehran and the Iranian Kidney Foundation, Tehran, Iran were enrolled using maximum variation purposive sampling method. Sampling was continued until data saturation was reached. The data collection method was in-depth and semi-structured interviews. In order to analyze the data, the directed qualitative content analysis method was conducted based on the method proposed by Elo and Kyngas which was modified by Assaroudi et al.Results A total of 1162 codes, 63 subcategories, 18 generic categories, and 5 main categories were extracted. The concept of caregiver burden in family caregivers of patients receiving hemodialysis and its dimensions based on the dimensions of the Structural Model of Caregiver Burden Model were approved and another dimension titled a time-dependent burden added to it. Conclusions The caregiver burden experienced by caregivers of patients receiving hemodialysis has physical, psychological, emotional, spiritual, financial, social, and time-dependent dimensions.

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Family Members’ Experiences With Dialysis and Kidney Transplantation

et al. 2019

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Rationale & Objective Understanding whether family members’ experiences with patients’ treatment for end-stage kidney disease (ESKD) were expected could guide the development of family-centered interventions that enhance the preparedness of patients and their care partners for kidney replacement therapies. We explored unexpected negative experiences with ESKD treatments among family members of dialysis and posttransplantation patients to identify meaningful directions for family-centered research and clinical care. Study Design Qualitative study. Setting & Participants 8 focus groups comprising 49 family members of dialysis patients and living donor kidney transplant recipients undergoing medical care in Baltimore, MD. Analytical Approach Focus groups were stratified by patients’ treatment (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or living donor kidney transplantation) and family members’ self-reported race (African American vs non–African American), resulting in 2 groups per treatment experience. Inductive thematic analysis was used to identify themes in focus group transcripts. Themes shared across different treatment groups were highlighted to provide insight into common experiences. Results We identified 4 themes that described family members’ unexpected negative treatment experiences: becoming a care partner (unanticipated responsibilities and sleep disruptions), adverse psychological treatment responses in patients (eg, depression) and family members (eg, anxiety), treatment delivery and logistics (insufficient information, medication regimen, and logistical inconveniences), and patient morbidity (dialysis-related health problems and fatigue). All themes were relevant to discussions in the in-center hemodialysis, peritoneal dialysis, and transplantation groups, whereas psychological responses and morbidity themes did not reflect discussions in home hemodialysis groups. Limitations Data collection occurred from 2008 to 2009; family members were recruited through patients undergoing care in 1 geographic area; 1 family member participant per patient. Conclusions Family members described a broad range of unexpected negative experiences with ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting care partner preparedness, health provider–family member communication, and relationship dynamics in family member–patient dyads are needed.

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Suspended Life Pattern: A Qualitative Study on Personal Life Among Family Caregivers of Hemodialysis Patients in Iran

Cited by 17 publications

References 26 publications

Patient participation in the clinical pathway—Nurses’ perceptions of adults’ involvement in haemodialysis

Patient participation in the clinical pathway—Nurses’ perceptions of adults’ involvement in haemodialysis

Caregiver Burden in Caregivers of Patients Receiving Hemodialysis: A Qualitative Study

Family Members’ Experiences With Dialysis and Kidney Transplantation

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