Family caregiver's experiences of providing care to patients with End‐Stage Renal Disease in South‐West Nigeria

Oyegbile, Yemisi Okikiade; Brysiewicz, Petra

doi:10.1111/jocn.13689

Cited by 24 publications

(46 citation statements)

References 34 publications

(52 reference statements)

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“… 11 Unsurprisingly, family members convey uncertainty about their role in patients’ care, describe feeling overlooked and being treated poorly by health care providers, encounter difficulties accessing the health care system, lack treatment-related and disease-related knowledge, and report unmet support needs. 9 , 10 , 12 , 13 , 14 , 15 …”

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confidence: 99%

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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confidence: 99%

Family Members’ Experiences With Dialysis and Kidney Transplantation

et al. 2019

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“…Pain and other Physical Symptoms [31][32][33][34][35][36][37][38][39][40][41] Nutritional Support 36,[41][42][43][44][45][46] Functional limitations (Inability to conduct activities of daily living) 35,43,44,[47][48][49] Wounds and wound odours 33,44 Libido problems and sexual needs 31,35,[50][51][52][53] Reproduction (Pregnancy and breastfeeding) 40,51,44,49,[54][55][56] Cognitive and behavioural problems 57 Physical symptoms/ physical health suffering as a result of providing physical care 58 : fatigue, 59 exhaustion, 45 sleeplessness, 59 back pain, 60,61 chest and shoulder pain 61 Neglecting own self and personal symptoms 45,…”

Section: Physical Needsmentioning

confidence: 99%

“…Isolation and loneliness 33,40,41,44,50,51,53,56,66,74,77 Deteriorating social and family networks 49,56,66,67,69,77 Discrimination and stigma due to illness cause (promiscuity based or mysterious) 35,40,51,53,56,62,67,77 Cultural interpretations of problems 45 Libido problems, Sexual needs and intimacy 35,50,51,52,67 Fear of disclosure 52,53,56,71 Strain on relationship with family and friends 31,48,49,52,54 Gender-specific impacts on women (exacerbated domestic violence) 67 Restricted social networks 60,79 Restricted social participation 59,61,76 Coping with complex family dynamics and Disintegrating extended family 45,59 Homec...…”

Section: Social Needs Relationship Needsmentioning

confidence: 99%

“…Inability to fulfil social roles Decreasing support systems 36 Childcare 36,56,66 Need for support with shopping 77 Practical support with care when bedridden 36,48,77 Planning for children after their own death 37,43,56,69 Relief/Respite from and support in caring 32,36,45,48,58,60,61,76,80,82,85 Feeling overwhelmed and Needing a break 45,[58][59][60]67,87 Taking time off school and work 36,43,45,60,66,82 Practical support in providing personal care where culturally inappropriate 79 Restricted ambitions 60 Managing fragmented care coordination 87 Clinical supplies for care 63,75,85…”

Section: Practical Support Needsmentioning

confidence: 99%

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What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

et al. 2021

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Background: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. Aim: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. Design: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. Data sources: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. Results: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS ( n = 99 studies) or cancer ( n = 59), from East ( n = 72) and Southern ( n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). Conclusions: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

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“…Many studies have been conducted in relation to the perceptions and experiences of family carers of people with invalidating illnesses. However, studies about family carers living with people with non-invalidating chronic diseases are scarce 16 17. In the case of CD, several publications about carers’ quality of life and their burden are available, although few have specifically focused on the carers’ own experience 18 19…”

Section: Introductionmentioning

confidence: 99%

Experiencing the care of a family member with Crohn’s disease: a qualitative study

et al. 2019

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ObjectivesTo explore the experiences of caregivers living with relatives affected by Crohn’s disease (CD) in a context in which the family provides social support.DesignA qualitative study based on a phenomenological approach was conducted through in-depth interviews.SettingParticipants living in Alicante (Spain) were recruitedParticipantsEleven family caregivers of people with CD were interviewed.MethodsThe in-depth interviews took place in the participants’ homes and were audio recorded and then transcribed for a qualitative thematic analysis.ResultsFive themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy ‘with or without me’, (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.ConclusionThe findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers’ inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers’ burdens.

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Family caregiver's experiences of providing care to patients with End‐Stage Renal Disease in South‐West Nigeria

Abstract: Nurses need to engage family caregivers on disease-specific teachings that might promote understanding of the disease process and role expectation. Family caregivers may benefit from social support services.

Cited by 24 publications

References 34 publications

Family Members’ Experiences With Dialysis and Kidney Transplantation

Family Members’ Experiences With Dialysis and Kidney Transplantation

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

Experiencing the care of a family member with Crohn’s disease: a qualitative study

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