Poojari Deepalaxmi Paresh, Umakanth Shashikiran, Maiya G Arun, Rao Bhamini Krishna, Brien Marie, Narayan Amitesh
Department of Physiotherapy, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India.
Department of Medicine, Dr TMA Pai Hospital, Udupi, Karnataka, India.
Child Care Health Dev. 2022 Mar;48(2):286-297. doi: 10.1111/cch.12929. Epub 2021 Nov 28.
Parental views and expectations about family-centred care (FCC) need to be understood for its successful implementation. Knowledge of caregiver's perceptions and needs, within their social and cultural context, forms the basis for effective health care partnerships with families. The purpose of this study was to explore perceptions about FCC among caregivers of children with cerebral palsy (CP) in South India.
Fourteen caregivers of children with CP (aged 4-12 years) living in rural areas of the coastal region of Karnataka, India, participated in this qualitative study. Face-to-face semi-structured interviews were recorded and transcribed for analysis using the framework and hybrid approaches. Thematic mapping of the categories and themes was done to explore relationships about perceptions of FCC.
Caregiver's life emerged inductively as a new theme highlighting caregiver's own physical and mental health, family roles and well-being, integrating the onus of care with household responsibilities, limited participation in personal activities and social isolation. The qualitative findings revealed the ubiquity of respectful and trusting relationships with health professionals while expressing paucity of coordinated comprehensive care, sporadic partnerships and opportunities for shared decision-making; desire for receiving specific information related to child's progress and prognosis; and general information on community resources and the need of empowerment and support groups.
Our study has practical implications for the implementation of FCC within the South Indian context, by recognizing unique caregiver needs and expectations in sync with cultural perspectives towards childhood disability such as societal stigma, values and traditional beliefs; attitudes towards medical professionals; and life stressors and gender responsibilities.
为成功实施以家庭为中心的护理（FCC），需要了解父母对其的看法和期望。了解照顾者在其社会和文化背景下的认知和需求，是与家庭建立有效医疗保健伙伴关系的基础。本研究的目的是探讨印度南部脑瘫（CP）患儿照顾者对FCC的看法。
14名居住在印度卡纳塔克邦沿海地区农村的CP患儿照顾者（年龄4 - 12岁）参与了这项定性研究。采用框架法和混合法对面对面半结构化访谈进行记录和转录分析。对类别和主题进行主题映射，以探索关于FCC认知的关系。
照顾者的生活归纳为一个新主题，突出了照顾者自身的身心健康、家庭角色和幸福感，将照顾责任与家务责任相结合，个人活动参与有限以及社会孤立。定性研究结果显示，与医疗专业人员存在普遍的尊重和信任关系，但同时表示缺乏协调的综合护理、零星的伙伴关系和共同决策的机会；渴望获得与孩子的进展和预后相关的具体信息；以及关于社区资源的一般信息以及对赋权和支持小组的需求。
我们的研究通过认识到与印度南部文化背景下对儿童残疾的看法（如社会耻辱感、价值观和传统信仰）、对医疗专业人员的态度、生活压力源和性别责任同步的独特照顾者需求和期望，对在印度南部实施FCC具有实际意义。
