The experience of family caregivers caring for a terminal patient at home: A research review

Martín-Martín, Jesús; Olano‐Lizarraga, Maddi; Saracíbar‐Razquin, Maribel

doi:10.1016/j.ijnurstu.2016.09.010

Cited by 55 publications

(92 citation statements)

References 67 publications

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“…The importance of carers' role and the impact of caring on the lives of carers has been examined in situations where patients have a range of conditions [13,14]. Much of the literature is in relation to chronic conditions which highlights the structural and contextual factors that impact on carer burden [15].…”

Section: Introductionmentioning

confidence: 99%

Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies

Saletti‐Cuesta

Tutton

Langstaff

et al. 2016

Disability and Rehabilitation

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Purpose: This systematic review aimed to reconceptualise experiences from a variety of papers to provide direction for research, policy and practice.Method: Meta-ethnography was used to inform the review and 21 studies were included.Findings: The analysis identified a core theme of 'engaging in care: struggling through', as carers who wanted to be involved in caring learnt to live with the intense and stressful impact of caring and changes to their life. The core theme is represented through three themes 1) Helping another to live 2) Adapting ways of living and 3) Negotiating the unknown.Conclusions: The discussion identified a focus on carers of people suffering from a hip fracture, the willingness of informal carers to engage in caring and the intense experience of adapting to changes in relationships and dependency alongside a steep experiential learning curve. Tensions exist in negotiations with complex healthcare systems as carers do not feel their expertise is valued and struggle to find and understand information.

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Section: Introductionmentioning

confidence: 99%

Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies

Saletti‐Cuesta

Tutton

Langstaff

et al. 2016

Disability and Rehabilitation

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“…35 In the self-concept mode: symptoms of depression, 36 anxiety, 35 emotional stress, 36 somatization, 37 low self-esteem, 38 constant worry, feelings of uncertainty, 39 anger, guilt, 40 resentments, sadness, 35 feeling of frustration, [41][42] of burden, [43][44] feeling of lack of control over one's own life, 45 among others. In the role function mode: role conflict, 9 dissatisfaction with caregiver role.…”

Section: Family Caregivers From the Perspective Of Roy's Adaptation Mmentioning

confidence: 99%

Modelo De Adaptação Em Um Ensaio Clínico Controlado Com Cuidadores Familiares De Pessoas Com Doenças Crônicas

Díaz

Cruz

2018

Texto contexto - enferm.

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Objective: to elaborate the conceptual and theoretical-empirical structure, based on the application of Roy's Adaptation model, to guide the development of a controlled clinical trial aimed at assessing the effectiveness of a nursing intervention program to promote the adaptation of family caregivers with caregiver role strain.Method: theoretical study. The conceptual structure was developed in three phases: development of a comprehensive understanding of the conceptual model, literature review and construction of the conceptual and theoretical-empirical structure itself.Results: the application process demonstrated its consistency in the design of an intervention program for family caregivers of chronic patients, to be tested in a controlled clinical trial. The indicators of adaptation were the reduced score on the caregiver tension scale and the increased perception of wellbeing and quality of life. Conclusion:Roy's model serves as an important guide for nursing research intended to test nursing interventions that favor the wellbeing of family caregivers. DESCRIPTORS:Caregivers. Nursing. Nursing theory. Chronic disease. MODELO DE ADAPTAÇÃO EM UM ENSAIO CLÍNICO CONTROLADO COM CUIDADORES FAMILIARES DE PESSOAS COM DOENÇAS CRÔNICAS RESUMOObjetivo: elaborar a estrutura conceitual e teórico-empírica, a partir da aplicação do modelo de Adaptação de Roy, para nortear o desenvolvimento de um ensaio clinico controlado que avaliará a efetividade de um programa de intervenção de enfermagem para promover a adaptação de cuidadores familiares com tensão do papel de cuidador.Método: estudo teórico. A estrutura conceitual foi desenvolvida seguindo três passos: o desenvolvimento de uma compreensão abrangente do modelo conceitual, a revisão da literatura e a construção da estrutura conceitual e teórico-empírica, propriamente dita.Resultados: o processo de aplicação mostrou-se consistente no delineamento de um programa de intervenção para cuidadores familiares de pessoas com doenças crônicas, a ser testado num ensaio clínico controlado. Os indicadores de adaptação foram a diminuição da pontuação na escala de tensão do papel de cuidador e o aumento da percepção de bem-estar e qualidade de vida.Conclusão: o modelo de Roy configura-se como um guia importante para a pesquisa de enfermagem que pretende testar intervenções de enfermagem que favoreçam o bem-estar de cuidadores familiares. DESCRITORES:Cuidadores. Enfermagem. Teoria de enfermagem. Doença crônica.Texto Contexto Enferm, 2017; 26(4):e0970017Diaz LJR, Cruz DALM 2/10 MODELO DE ADAPTACIÓN EN UN ENSAYO CLINICO CONTROLADO CON CUIDADORES FAMILIARES DE PERSONAS CON ENFERMEDADES CRÓNICAS RESUMENObjetivo: elaborar el marco conceptual-teórica-empírico, a partir de la aplicación del modelo de Adaptación de Roy, para guiar un ensayo clínico controlado que evaluará la efectividad de un programa de intervención de enfermería para promover la adaptación de cuidadores familiares con cansancio del rol de cuidador.Método: estudio teórico. La estructura conceptual teórica empírica fue ...

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“…[6] The literature attests to the numerous challenges experienced by caregivers delivering home care. [6][7][8][9][10][11][12][13][14][15] Providing care for terminal cancer patients at home causes immense physical and mental exhaustion to the caregivers. [14,15] As a consequence, family caregivers develop physical and psychological illnesses during caregiving.…”

Section: Introductionmentioning

confidence: 99%

“…[14,15] As a consequence, family caregivers develop physical and psychological illnesses during caregiving. [6,7,[14][15][16] In addition, they report unmet needs. [16][17][18][19] Background Systematic reviews of qualitative and quantitative literature concerning relatives requirements caring for family members at the end of life care, Funk et al [11] and Stajduhar et al [13] documented that relatives have complex needs different from the people they are caring for, and should be treated as individuals with unique needs.…”

Section: Introductionmentioning

confidence: 99%

“…[17][18][19] Frequently caregivers experience giving care as a burden because of the responsibilities involved in helping the patient survive the journey of cancer, or alternatively to have a peaceful death. [6,7,20] In addition, carers frequently engage in home care for a sick relative while simultaneously working outside the home full time. Ultimately, the burden of care disrupts the caregivers personal needs and social relationships.…”

Section: Introductionmentioning

confidence: 99%

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The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

Saleh¹,

O’Neill²

2018

CNS

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Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain. Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis. Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers' well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members. Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

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The experience of family caregivers caring for a terminal patient at home: A research review

Cited by 55 publications

References 67 publications

Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies

Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies

Modelo De Adaptação Em Um Ensaio Clínico Controlado Com Cuidadores Familiares De Pessoas Com Doenças Crônicas

The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

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