Information, involvement, self-care and support-The needs of caregivers of people with stroke: A grounded theory approach

被引:22
作者
Lobo, Elton H. J. [1 ,2 ]
Frolich, Anne [2 ,3 ]
Abdelrazek, Mohamed M. [1 ]
Rasmussen, Lene J. [4 ,5 ]
Grundy, John [6 ]
Livingston, Patricia M. [7 ]
Islam, Sheikh Mohammed Shariful [8 ]
Kensing, Finn [9 ]
机构
[1] Deakin Univ, Sch Informat Technol, Geelong, Vic, Australia
[2] Univ Copenhagen, Dept Publ Hlth, Copenhagen, Denmark
[3] Slagelse Hosp, Innovat & Res Ctr Multimorbid, Region Zealand, Denmark
[4] Univ Copenhagen, Dept Cellular & Mol Med, Copenhagen, Denmark
[5] Univ Copenhagen, Ctr Hlth Aging, Copenhagen, Denmark
[6] Monash Univ, Fac Informat Technol, Melbourne, Vic, Australia
[7] Deakin Univ, Fac Hlth, Geelong, Vic, Australia
[8] Deakin Univ, Inst Phys Act & Nutr IPAN, Geelong, Australia
[9] Univ Copenhagen, Dept Comp Sci, Copenhagen, Denmark
来源
PLOS ONE | 2023年 / 18卷 / 01期
基金
澳大利亚国家健康与医学研究理事会;
关键词
QUALITY-OF-LIFE; FAMILY CAREGIVERS; CONCEPTUAL-FRAMEWORK; SURVIVORS; EXPERIENCES; PERSPECTIVES; HEALTH; PROGRAM; BURDEN; IMPACT;
D O I
10.1371/journal.pone.0281198
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
BackgroundGlobally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to better support them in their caregiving journey and improve the quality of care delivered. MethodsThe study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. ResultsThe study identified four core categories of needs: (i) Information: sufficient information delivered in layman's terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders. ConclusionsThere is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.
引用
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页数:25
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