Experiences of adult stroke survivors and their parent carers: a qualitative study

Jones, Lisa; Morris, Reg

doi:10.1177/0269215512455532

Cited by 27 publications

(41 citation statements)

References 44 publications

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“…The emotional impact of stroke was noted by Gosman-Hedström and Dahlin-Ivanoff 3 who found that mastering an uncertain, unpredictable life was the dominant theme for older females caring for partners with stroke, whereas a study by Jones and Morris 30 of adult stroke survivors and their parent carers highlighted carers' emotional turmoil, including chronic grief and distress.…”

Section: Summary Of Main Fi Ndingsmentioning

confidence: 99%

Exploring Health Care Providers’ Perceptions of the Needs of Stroke Carers: Informing Development of an Optimal Health Program

O'Brien

Moore

Rolley

et al. 2014

Topics in Stroke Rehabilitation

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Background: Health care provider experiences of the carer have been researched, but little is written about how these can inform development of support programs. Objectives: This study aimed to (1) explore health care provider perceptions of stroke carer roles and support needs and (2) examine carer needs across the stroke care trajectory to assist with development of an Optimal Health Program (OHP) to support carers. This study is part of a staged program of research that will evaluate and refi ne the OHP. Methods: Four dual-moderated semi-structured focus groups of stroke health care providers across acute, subacute, and community rehabilitation services were conducted. Facilitators used a semistructured focus group schedule to guide discussion. Sessions were recorded, transcribed, and analyzed using thematic and content analysis. Results: Three key themes emerged: transition, information, and impact of stroke. A number of subthemes highlighted the distinct roles of health care providers and carers. Specifi c elements of the OHP were identifi ed as having the potential to advance support for carers across the stroke care trajectory. Discussion: Findings support the integration of an OHP for carers within existing stroke care services in Australian public hospital and community settings. Conclusion: This study suggests how health care provider experiences could inform a self-management OHP to assist carers in navigating stroke services and to address their health-related concerns.

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Section: Summary Of Main Fi Ndingsmentioning

confidence: 99%

Exploring Health Care Providers’ Perceptions of the Needs of Stroke Carers: Informing Development of an Optimal Health Program

O'Brien

Moore

Rolley

et al. 2014

Topics in Stroke Rehabilitation

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“…Families often then take on the primary role of caregiver 26,27 ; may be left to grapple with cognitive and behavioural changes, and required to reorganise their everyday life to adjust to their new role [27][28][29] . Considering the extent of responsibility families have in caring for their loved one following brain injury 26 , one might presume that families would be well informed regarding the brain injury and potential behavioural changes.…”

Section: Introductionmentioning

confidence: 99%

Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review

et al. 2015

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Objectives: To examine family involvement in the management of behavioural problems following ABI in the community.Research Design: Systematic literature review.Methods: Six electronic databases relevant to the field of brain injury were searched between 1980-2013. Citation indexes were used, and references from articles hand searched for further literature. Studies that met the broad inclusion criteria were screened for relevance, and articles selected for full-text review independently considered by two reviewers. Those found to be relevant were analysed using PEDro and McMasters critical appraisal tools.Results: Three hundred and three studies were identified after duplicates were removed and 56 were assessed for relevance, yielding 10 studies for review. Although the majority of studies were weak in design, 5 revealed significant findings supportive of family involvement in the management of behavioural problems following ABI, especially where interventions consisted of both educational components and individualised behavioural plans. Findings revealed no significant changes in family burden following behavioural interventions.Conclusions: There is limited research and lack of high evidence studies evaluating family involvement in behaviour management following ABI; therefore no conclusions can be drawn regarding its efficacy. More research is needed, with larger sample sizes and more rigorous design, including proper comparison groups.

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“…Keluarga penderita strok merasa bahwa mereka berkewajiban secara moral, dan tidak punya pilihan selain untuk menerima peran caregiver dan mereka menganggap caregiver sebagai 'bagian integral dari kehidupan' dan sebagai 'tugas yang tidak dapat dihindari' (Jones & Morris, 2012).…”

Section: Pembahasanunclassified

“…Stres, marah, temperamen, melukai perasaan, putus asa, ketidaknyamanan, dan kejenuhan adalah beberapa konsekuensi emosional negatif dari caregiver (Jullamate, dkk., 2006;Pierce, 2001;Pierce, dkk., 2012;Jones & Morris, 2012).…”

Section: Penelitian Yang Dilakukan Oleh Arksey Danunclassified

“…Caregiver berjuang untuk mengelola kondisi kehidupan yang sulit dengan menerapkan strategi koping yang berbeda seperti, tetap positif, menjadi fleksibel dengan perubahan yang mendadak, membandingkan hal baru dengan pengalaman merawat pasien sebelumnya, menggunakan humor, dan dukungan keluarga dan temanteman (Jones & Morris 2012). Terlibat dalam kegiatan keagamaan dengan mengandalkan sistem dukungan sosial dan tokoh agama, kemampuan koping yang penting untuk meningkatkan kehidupan caregiver dan memelihara kesejahteraan fisik dan emosional mereka (Jullamate, dkk., 2006).…”

Section: Penelitian Yang Dilakukan Oleh Arksey Danunclassified

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Pengalaman Keluarga sebagai Caregiver dalam Merawat Pasien Strok di Rumah

Daulay¹,

Setiawan²,

S³

2014

JKP

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AbstrakSebagian besar pasien strok yang kembali ke rumah mengalami kecacatan. Kecacatan akibat strok tidak hanya berdampak bagi pasien, akan tetapi juga berdampak bagi anggota keluarga yang akan menjadi caregiver. Penelitian pada caregiver ini penting karena caregiver berperan terhadap keberhasilan pengobatan dan perawatan pasien strok. Penelitian ini bertujuan untuk mengeksplorasi secara mendalam tentang makna pengalaman keluarga sebagai caregiver pasien strok di rumah. Penelitian ini merupakan studi fenomenologi deskriptif. Pengumpulan data dilakukan dengan indepth interview. Partisipan dalam penelitian ini berjumlah 16 orang yang dipilih dengan teknik purpossive sampling. Data yang diperoleh dianalisis dengan pendekatan Colaizzi. Hasil analisis penelitian ditemukan lima tema yaitu: memberikan dukungan total, memenuhi kebutuhan dasar, penderitaan dan hikmah bagi caregiver, kurangnya keterampilan dalam merawat, dan keterbatasan caregiver. Caregiver menderita masalah fisik, psikologis, dan sosial. Pada umumnya, caregiver merasa terabaikan, mereka membutuhkan informasi terkait penyakit pasien, cara merawat pasien strok, dan sumber-sumber komunitas pelayanan kesehatan. Berdasarkan hasil penelitian, perawat disarankan untuk melakukan perencanaan pulang individual yang lebih berpusat pada keluarga daripada pendekatan berpusat pada pasien.Kata kunci: Caregiver keluarga, merawat, pasien strok. The Live Experience of Caregiver Caring for Patient with Stroke at Home AbstractMost of the strok patients who return home suffer from disabilities. Disability caused by strok not only impact on strok patients, but also impact on family members who will be the caregiver. The concern to the caregiver is important because the success of the treatment and care of strok patients can not be separated from the help and support provided by the caregiver. This study aims to explore deeply the meaning of family experience as caregiver for strok patients at home. This study is a descriptive phenomenological study. Data were collected through indepth interview. Participants in this study were 16 people who were selected by purposive sampling technique. The data obtained were analyzed by using Colaizzi approach. Results of analysis found 5 (five) themes, namely: giving total support, meeting basic needs, suffering and wisdom for the caregiver, lack of skills in caring for, and limitations of caregiver. Caregiver suffering from physical, psychological, and social problems. In general, caregivers feel neglected, they need information about the patient's illness and how to care for them as well as community resources for health services. Based on the results of the research, it is suggested that discharge planning approach should be focused more on family rather than patient.

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Experiences of adult stroke survivors and their parent carers: a qualitative study

Cited by 27 publications

References 44 publications

Exploring Health Care Providers’ Perceptions of the Needs of Stroke Carers: Informing Development of an Optimal Health Program

Exploring Health Care Providers’ Perceptions of the Needs of Stroke Carers: Informing Development of an Optimal Health Program

Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review

Pengalaman Keluarga sebagai Caregiver dalam Merawat Pasien Strok di Rumah

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