胃癌患者家庭照顾者照顾负荷、应对方式及照顾知识需求研究
摘要
胃癌是全球第四大最常见的恶性肿瘤,是死亡率仅次于肺癌的第二大癌症。胃癌的治疗原则为手术,在胃癌术后的居家治疗康复过程中,家庭照顾者是照顾和护理工作的主要承担者。他(她)们一方面要承受亲人患癌的巨大打击和精神压力,另一方面承担着主要的照顾任务、沉重的经济负担,同时还要努力控制自己的情绪并为患者提供积极的情感支持,这给胃癌患者家庭照顾者的身心健康带来不利影响。因此,关注胃癌患者家庭照顾者照顾负荷及其影响因素、照顾知识需求、应对方式,为制定针对性的干预措施提供依据,对于提高照顾者照顾能力和身心健康水平,进而提升对胃癌患者的支持水平有着至关重要的作用。这不仅是现代护理理念以“健康”为中心的体现,也是我们开展此项研究的意义所在。目的：1、研制胃癌患者家庭照顾者的照顾负荷量表。2.描述胃癌患者家庭照顾者的照顾负荷现状。3.描述胃癌患者家庭照顾者的应对方式。4.描述胃癌患者家庭照顾者的照顾知识需求。
方法：以文献回顾为基础,综合已有的相关问卷,发展胃癌患者家庭照顾者照顾负荷问卷的条目并进行结构效度测定。以上海市两家三级甲等医院胃肠肿瘤外科胃癌术后三个月内患者的家庭照顾者(共296例)为调查对象。采用胃癌患者照顾者照顾负荷问卷、特质应对方式问卷、照顾知识需求问卷分别评定照顾者的照顾负荷、应对方式以及照顾知识需求；采用半结构式访谈收集10例个案资料,采用Claizzi的现象学资料分析法分析访谈资料,其结果用于补充单一的量性资料对现象描述的不足。
结果：1、胃癌患者家庭照顾者照顾负荷问卷的结构效度测定得到量表的三个纬度：生理纬度(5个条目)、心理纬度(7个条目)和社会纬度(6个条目)。2、胃癌患者家庭照顾者照顾负荷总分为39.39±13.72,3个维度负荷的均分分别为：心理负荷2.47±0.87,为最高,社会负荷2.37±0.91,为第二,身体负荷1.57±0.81,为最低。照顾负荷影响因素的多元回归分析结果显示：照顾负荷总分、身体负荷及心理负荷与患者病程分期、照顾者的自身健康及与患者的社会关系皆有线性回归关系,而身体负荷和心理负荷又各自单独与照顾者的职业和患者的年龄有线性回归关系,社会负荷只与患者病程分期有相关性。表明中晚期患者照顾者的照顾负荷显著高于早期患者照顾者,配偶照顾者的照顾负荷显著高于非配偶照顾者。3、胃癌患者家庭照顾者的应对方式较为消极,照顾负荷与积极应对方式呈负相关,与消极应对方式呈正相关。照顾者的应对方式与心理负荷有高度相关性。4、胃癌患者家庭照顾者最需要的照顾知识是饮食和营养方面知识、有关疾病复发的预防及并发症的识别和应对方法等,而对如何处理自身及患者心理社会层面的健康问题相对不感兴趣。5、采用Claizzi的现象学资料分析法得出照顾者的三个感受和需求,即：1)心理负荷沉重；2)居家照顾知识缺乏；3)角色转变的应对,一定程度地补充和解释了量性资料的结果。
结论：自行研制的胃癌患者照顾者照顾负荷量表具有较好的信度和效度。胃癌患者家庭照顾者三维度照顾负荷中,心理负荷最严重,其次为社会负荷,身体负荷最轻。胃癌患者家庭照顾者需要增加照顾知识,中晚期患者的配偶照顾者、自身健康差、照顾知识需求高、应对方式消极的照顾者的照顾负荷重。医务人员应将患者及照顾者视为二联体,在治疗胃癌患者时,重视对其照顾者身心状态及需求的关注,在为照顾者制定针对性的干预措施时,应考虑到患者因素所致的影响,注意了解其身心状态及影响因素,有的放矢,以提高照顾者的身心健康水平和照顾能力,促进胃癌患者及其家庭照顾者的生活质量。
Gastric cancer is the fourth most common cancer worldwide in 2002. It is a disease with a high death rate making it the second most common cause of cancer death worldwide after lung cancer. Surgery is the most common treatment and is the only hope of cure for gastric cancer. In the post operational gastric cancer treatment and rehabilitation process of the home, family caregiver are the most crucial factor and the main bearer of the work..Suffering from the distress that their familiy members with cancer,caregivers have to assume the primary responsibility of caring for the patients,afford the finacial burden,actively engage in emotion support for the patients,whilst also attempt to manage their own feeling states.These stress-factors could bring negative impact to the caregivers,physical and mental health.Paying close attention to the burden of caregiver,care knowledge needs,coping style,and analyzing its related factors,and finally looking for suitable support measure to help them are our sense to conduct this research,which is also the demonstration of the current concept of nursing-"Health-centred".
Objective:
To develop Care Burden of Family Caregiver Questionnaire, in assessment of the burden of caregivers for gastric cancer patients.Investigate Care Burden, Care Knowledge Needs and Coping Style in caregivers of post operational patients with gastric cancer and the related factors.lt would provide the foundation of interventions and that would improve the level of physical and mental heath of caregivers and the caregivers surport level for the gastric cancer patients.
Methodes:
Based on the literature and matural questionnaires,develop Care Burden of Family Caregiver Questionnaire,and explore its structure validity.The study sample consisted of 296 family caregivers of post operational patients with gastric cancer,who hospitalized at Department of Gastrointestinal Oncology in two hospital in Shanghai between January in 2008 and June in 2009.Caregiver burden,care knowledge needs and Coping Style were assessed with are Burden of Family Caregiver Questionnaire (developed by author), care knowledge needs (designed by author),Coping Style Scale(by Jiang QianJin) respectively.The general condition of the caregivers and disease information of the patients were collected with questionnaires designed by author.10 of them were participated in semi-structured interview regarding their experience of caregiving.
Results:
1. Care Burden of Family Caregiver Questionnaire showed good reliability and validity.
2.The mean scores of the primary family caregivers on the burden was 39.39±3.72, which was moderate.They reported different degree of burden in physical, psychological, and social areas, with the psychological burden score(2.473±0.871) being the highest and the physical(1.572±0.806) being the lowest. The results from the multiple regression showed that the total burden, the psychological burden and the physical burden in caregivers were related with patients cancer stage,caregivers health,the relationship with patients.
3.Most in need of health education of the primary family caregivers is diet and nutrition knowledge, medical knowledge about gastric cancer, how to recognize and respond to complications of post operation; while they were less interested in how to deal with health problems of themselves and patients, in mental and social dimension.
4.The level of burden of family caregivers of patients with gastric cancer is related to their coping style. Positive coping is helpful to decrease the level of burden of family caregivers, while negative coping may increase their level of burden.
5.Three themes were found in the qualitative data, "heavy burden in psychological areas","lack of knowledge about family caregiving"," coping with role changes".
Conclusion:
Care Burden of Family Caregiver Questionnaire showed good reliability and validity in the assessment of burden in caregivers of gastric cancer patients.The level of burden was different degree of burden in physical, psychological, and social dimensions, with the psychological burden being the heaviest and the physical burden being the lowest.
The caregivers had stronger need of care knowledge.We should provide useful information about the diet and nutrition,the disease,how to observe and deal with complications;and perform targeted training of family care techniques.Spouses of advanced gastric caner patients, worse health of caregivers,caregivers in stonger need of health education and negative coping are the specific groups at high risk for caregiving burden.Health care personnel should treat the patient and their family caregiver as a'patient-caregiver dyad',while the gastric cancer patients were given treatment,the caregivers'burden should be concerned;while health care personnel provide interventions to the caregivers,we should considered of the aspect of patients factors.Health care personnel should actively talk with patients and their caregivers,and be aware of their caregiving burden,coping style and it's effected factors;pay attention to their health education needs,if necessary,should provide direction interventions,to improve the level of health in caregivers,and then to improve the level of surport for gastric cancer patients for post operation.
方法：以文献回顾为基础,综合已有的相关问卷,发展胃癌患者家庭照顾者照顾负荷问卷的条目并进行结构效度测定。以上海市两家三级甲等医院胃肠肿瘤外科胃癌术后三个月内患者的家庭照顾者(共296例)为调查对象。采用胃癌患者照顾者照顾负荷问卷、特质应对方式问卷、照顾知识需求问卷分别评定照顾者的照顾负荷、应对方式以及照顾知识需求；采用半结构式访谈收集10例个案资料,采用Claizzi的现象学资料分析法分析访谈资料,其结果用于补充单一的量性资料对现象描述的不足。
结果：1、胃癌患者家庭照顾者照顾负荷问卷的结构效度测定得到量表的三个纬度：生理纬度(5个条目)、心理纬度(7个条目)和社会纬度(6个条目)。2、胃癌患者家庭照顾者照顾负荷总分为39.39±13.72,3个维度负荷的均分分别为：心理负荷2.47±0.87,为最高,社会负荷2.37±0.91,为第二,身体负荷1.57±0.81,为最低。照顾负荷影响因素的多元回归分析结果显示：照顾负荷总分、身体负荷及心理负荷与患者病程分期、照顾者的自身健康及与患者的社会关系皆有线性回归关系,而身体负荷和心理负荷又各自单独与照顾者的职业和患者的年龄有线性回归关系,社会负荷只与患者病程分期有相关性。表明中晚期患者照顾者的照顾负荷显著高于早期患者照顾者,配偶照顾者的照顾负荷显著高于非配偶照顾者。3、胃癌患者家庭照顾者的应对方式较为消极,照顾负荷与积极应对方式呈负相关,与消极应对方式呈正相关。照顾者的应对方式与心理负荷有高度相关性。4、胃癌患者家庭照顾者最需要的照顾知识是饮食和营养方面知识、有关疾病复发的预防及并发症的识别和应对方法等,而对如何处理自身及患者心理社会层面的健康问题相对不感兴趣。5、采用Claizzi的现象学资料分析法得出照顾者的三个感受和需求,即：1)心理负荷沉重；2)居家照顾知识缺乏；3)角色转变的应对,一定程度地补充和解释了量性资料的结果。
结论：自行研制的胃癌患者照顾者照顾负荷量表具有较好的信度和效度。胃癌患者家庭照顾者三维度照顾负荷中,心理负荷最严重,其次为社会负荷,身体负荷最轻。胃癌患者家庭照顾者需要增加照顾知识,中晚期患者的配偶照顾者、自身健康差、照顾知识需求高、应对方式消极的照顾者的照顾负荷重。医务人员应将患者及照顾者视为二联体,在治疗胃癌患者时,重视对其照顾者身心状态及需求的关注,在为照顾者制定针对性的干预措施时,应考虑到患者因素所致的影响,注意了解其身心状态及影响因素,有的放矢,以提高照顾者的身心健康水平和照顾能力,促进胃癌患者及其家庭照顾者的生活质量。
Gastric cancer is the fourth most common cancer worldwide in 2002. It is a disease with a high death rate making it the second most common cause of cancer death worldwide after lung cancer. Surgery is the most common treatment and is the only hope of cure for gastric cancer. In the post operational gastric cancer treatment and rehabilitation process of the home, family caregiver are the most crucial factor and the main bearer of the work..Suffering from the distress that their familiy members with cancer,caregivers have to assume the primary responsibility of caring for the patients,afford the finacial burden,actively engage in emotion support for the patients,whilst also attempt to manage their own feeling states.These stress-factors could bring negative impact to the caregivers,physical and mental health.Paying close attention to the burden of caregiver,care knowledge needs,coping style,and analyzing its related factors,and finally looking for suitable support measure to help them are our sense to conduct this research,which is also the demonstration of the current concept of nursing-"Health-centred".
Objective:
To develop Care Burden of Family Caregiver Questionnaire, in assessment of the burden of caregivers for gastric cancer patients.Investigate Care Burden, Care Knowledge Needs and Coping Style in caregivers of post operational patients with gastric cancer and the related factors.lt would provide the foundation of interventions and that would improve the level of physical and mental heath of caregivers and the caregivers surport level for the gastric cancer patients.
Methodes:
Based on the literature and matural questionnaires,develop Care Burden of Family Caregiver Questionnaire,and explore its structure validity.The study sample consisted of 296 family caregivers of post operational patients with gastric cancer,who hospitalized at Department of Gastrointestinal Oncology in two hospital in Shanghai between January in 2008 and June in 2009.Caregiver burden,care knowledge needs and Coping Style were assessed with are Burden of Family Caregiver Questionnaire (developed by author), care knowledge needs (designed by author),Coping Style Scale(by Jiang QianJin) respectively.The general condition of the caregivers and disease information of the patients were collected with questionnaires designed by author.10 of them were participated in semi-structured interview regarding their experience of caregiving.
Results:
1. Care Burden of Family Caregiver Questionnaire showed good reliability and validity.
2.The mean scores of the primary family caregivers on the burden was 39.39±3.72, which was moderate.They reported different degree of burden in physical, psychological, and social areas, with the psychological burden score(2.473±0.871) being the highest and the physical(1.572±0.806) being the lowest. The results from the multiple regression showed that the total burden, the psychological burden and the physical burden in caregivers were related with patients cancer stage,caregivers health,the relationship with patients.
3.Most in need of health education of the primary family caregivers is diet and nutrition knowledge, medical knowledge about gastric cancer, how to recognize and respond to complications of post operation; while they were less interested in how to deal with health problems of themselves and patients, in mental and social dimension.
4.The level of burden of family caregivers of patients with gastric cancer is related to their coping style. Positive coping is helpful to decrease the level of burden of family caregivers, while negative coping may increase their level of burden.
5.Three themes were found in the qualitative data, "heavy burden in psychological areas","lack of knowledge about family caregiving"," coping with role changes".
Conclusion:
Care Burden of Family Caregiver Questionnaire showed good reliability and validity in the assessment of burden in caregivers of gastric cancer patients.The level of burden was different degree of burden in physical, psychological, and social dimensions, with the psychological burden being the heaviest and the physical burden being the lowest.
The caregivers had stronger need of care knowledge.We should provide useful information about the diet and nutrition,the disease,how to observe and deal with complications;and perform targeted training of family care techniques.Spouses of advanced gastric caner patients, worse health of caregivers,caregivers in stonger need of health education and negative coping are the specific groups at high risk for caregiving burden.Health care personnel should treat the patient and their family caregiver as a'patient-caregiver dyad',while the gastric cancer patients were given treatment,the caregivers'burden should be concerned;while health care personnel provide interventions to the caregivers,we should considered of the aspect of patients factors.Health care personnel should actively talk with patients and their caregivers,and be aware of their caregiving burden,coping style and it's effected factors;pay attention to their health education needs,if necessary,should provide direction interventions,to improve the level of health in caregivers,and then to improve the level of surport for gastric cancer patients for post operation.
引文
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