恶性肿瘤患儿母亲支持性照护需求的质性研究
发布时间：2018-09-08 16:54
【摘要】：目的:通过对恶性肿瘤患儿母亲的深度访谈,了解患儿母亲在陪同患儿治疗过程中的照护需求,针对患儿母亲的需求为其提供有针对性的支持服务,从而减轻患儿母亲的身体及心理负担,提高患儿及患儿家庭的生存质量;同时为医务工作者了解患儿母亲的需求并制定相应的健康教育提供参考依据。方法:选取2016年1月至2016年10月于河北省某三级综合医院小儿外科就诊的恶性肿瘤患儿母亲为研究对象,采用目的抽样的方法选取符合条件的患儿母亲,利用半结构化访谈的方法进行深入访谈,同时利用观察法、笔记法收集恶性肿瘤患儿母亲照护需求的内容。每次访谈时间为30~40分钟,访谈结束后反复听取录音,并及时将录音转化为文字。资料的收集、分析工作同时进行,当收集的研究对象信息饱和时终止访谈。本研究共纳入16例患儿母亲。结果:孩子被诊断恶性肿瘤后,母亲作为患儿的主要照顾者,由于缺乏对疾病的认知及疾病发展的不确定性,面临着巨大的身体心理压力;同时肿瘤长期治疗过程的艰难与复杂,使很多母亲需要提供护理患儿的知识及技能;恶性肿瘤治疗周期长而且易复发,使很多患儿母亲在承受身体及心理压力的同时也承受着巨大的经济压力,因此产生了相应的需求。恶性肿瘤患儿母亲支持性照护需求可概括为三大主题:主动寻求信息支持、有意忽视情感支持及被动寻求行为支持1主题一:主动寻求信息支持1.1求助于专业医务人员诊断初期,绝大多数母亲对于儿童恶性肿瘤都是一片陌生的领域,患儿母亲主动向医务人员寻求有关儿童肿瘤治疗、康复的相关知识,使母亲对患儿治疗充满希望,可以增强治疗的依从性;作为医护人员,了解患儿母亲的需求,提供有针对性的指导,显得至关重要。1.2向同伴寻求治疗信息同伴支持是指具有相似疾病或身体状况经历的人们之间在生活实践、社会和情感方面的互相帮助。这些患儿母亲是接触最多的人,她们彼此有同感且共情,所以她们更容易理解和帮助彼此。那些有着相同经历的母亲彼此会提供帮助,分享治疗信息,是最有效的一种沟通。1.3求助于网络肿瘤治疗是一个多方合作的过程,患儿的母亲希望从各个方面获得知识,更有利于患儿的治疗与康复。医院医生护士治疗任务很重,无暇顾及患儿家长的需求,往往只有从各个网站咨询,但有的母亲感觉可信度不高。2主题二:有意忽视自身情感需求:个人身体心理健康的需求2.1希望得到鼓励支持的需求孩子被确诊后,为了照顾孩子,母亲被迫中止工作,几乎与社会脱节,社会角色的缺如,治疗的痛苦经历是很多患儿母亲感到绝望无助,特别希望得到别人的安慰与理解。2.2大多来自家庭的支持家庭支持就是家庭成员所提供的物质、情感和信息等各方面的帮助,患儿父母一般不愿意将患儿疾病告诉别人,因此患儿的母亲的情感支持大多来自丈夫及其他家庭成员的支持。2.3忽视专业的心理疏导及情感支持的需求儿童恶性肿瘤治疗周期长、并发症严重、患儿的生命随时受到威胁使陪护患儿的母亲在长期心情如此压抑下,特别需要有专业的心理及社会工作者进行心理疏导,使患儿母亲的不良心态得到调整,为患儿创造一个良好的家庭氛围,有利于患儿恢复健康,但患儿母亲从不自动寻求支持系统,使身心处于极度疲惫状态。3主题三:被动寻求行为支持:社会帮扶支持的需求3.1经济支持的需求孩子被确诊为恶性肿瘤时,由于病程的持续,病情的严重及结果的不确定性,患儿家庭承受着较大的经济压力,很多家庭花光了积蓄,甚至卖房卖地,债台高筑,可为了孩子生的希望,这些母亲们在承受身心压力的同时也承受着巨大的经济负担。3.2社保政策的需求随着医疗保障制度的改革,我国已初步构建了多层次的医疗保障体系,取得了医疗保障制度的历史性转变。很多初诊的患儿家长不了解医保政策。还由于儿童肿瘤的治疗集中于北京、上海、广州等大城市,异地报销比例相对比较低,因此希望医保政策提高异地报销比例。结论:1肿瘤本身的消耗、手术及化疗的摧残拖垮了患儿的身体;治疗过程中的各种突发情况使费用时时升级及遥遥无期的治疗疗程给患儿母亲带来了巨大的身体心理压力及经济负担。2患儿被确诊为恶性肿瘤后,患儿母亲从最初的怀疑恐惧到逐步接受现实,恶性肿瘤的治疗过程使很多患儿母亲遭受了巨大的痛苦。无药可救、必死无疑等绝望的字眼时常浮现在眼前。为了孩子接受更好的治疗,患儿母亲主动寻求治疗信息;为患儿母亲提供情感支持,减轻心理应激,缓解紧张状态;动用一切可能的社会支持系统,减轻患儿母亲的照护负担,为患儿创造一个有利于治疗和康复的家庭环境;鼓励患儿母亲采用积极的应对方式,更好的适应生活,完成患儿的治疗。
[Abstract]:Objective: Through in-depth interviews with mothers of children with malignant tumors, to understand the care needs of mothers accompanying children during treatment, and to provide targeted support services for mothers of children, so as to reduce the physical and psychological burden of mothers of children with malignant tumors and improve the quality of life of children and families of children with malignant tumors. Methods: From January 2016 to October 2016 in a tertiary general hospital of Hebei Province, the mothers of children with malignant tumors were selected as the research objects, and the mothers of children who met the requirements were selected by purposeful sampling, and semi-structured interviews were conducted. Each interview lasted 30-40 minutes. After the interview, the mother listened to the tape recordings repeatedly and translated the tape recordings into words in time. Results: After the diagnosis of malignant tumors, the mother, as the main caregiver of the children, was confronted with tremendous physical and psychological pressure due to lack of awareness of the disease and uncertainty of the development of the disease. The knowledge and skills of managing children with malignant tumors; the long treatment cycle and easy recurrence of malignant tumors, so that many mothers of children with physical and psychological stress at the same time bear tremendous economic pressure, resulting in corresponding needs. Neglect emotional support and passive seeking behavior support 1 Topic 1: Initial seeking information support 1.1 Seek help from professional medical staff at the early stage of diagnosis, the vast majority of mothers for children with malignant tumors is a strange field, the mother of children with active medical staff to seek treatment of children with cancer, rehabilitation related knowledge, so that the mother of children with cancer. As a medical staff, it is very important to understand the needs of mothers and provide targeted guidance. 1.2 Seeking peer support from peers refers to the mutual help of people with similar diseases or physical conditions in life practice, social and emotional aspects. Mothers who share the same experiences offer help to each other and share information about treatment, which is the most effective form of communication. 1.3 Access to online cancer treatment is a multi-faceted collaborative process, and mothers of children hope. Doctors and nurses in hospitals have a heavy treatment task and are unable to take into account the needs of parents. They often only consult from various websites, but some mothers feel unreliable. 2 Theme 2: Intentional neglect of their emotional needs: personal physical and mental health needs 2.1 Hope to get. Mothers are forced to stop working to take care of their children. They are almost out of touch with society and lack of social roles. The painful experience of treatment is that many mothers feel hopeless and desperate. They especially want to be comforted and understood by others. 2.2 Most of the family support is provided by family members. With the help of material, emotional and information, parents are generally reluctant to tell others about the disease, so the emotional support of mothers comes mostly from the support of their husbands and other family members. 2.3 Neglect of professional psychological counseling and emotional support needs of children with malignant tumor treatment cycle is long, serious complications, suffering from Children's lives are threatened at any time, so that the mothers of accompanying children feel so depressed over a long period of time, especially need professional psychological and social workers to conduct psychological counseling, so that the mother's unhealthy mentality of the children can be adjusted, to create a good family atmosphere for the children, conducive to the recovery of the children's health, but the mother of the children never automatically seek it. Support system, make the body and mind in a state of extreme exhaustion.3 Theme 3: Passive seeking behavior support: social support needs 3.1 economic support needs when children were diagnosed with malignant tumors, due to the duration of the disease, the severity of the illness and the uncertainty of the outcome, children's families bear greater economic pressure, many families spent money. Save, even sell houses and land, high debt, can give birth to hope, these mothers bear physical and mental pressure at the same time bear a huge economic burden. 3.2 With the reform of the medical security system, China has initially constructed a multi-level medical security system, made a historic change in the medical security system. Many parents of newly diagnosed children do not understand the medical insurance policy. Because the treatment of children's tumors is concentrated in Beijing, Shanghai, Guangzhou and other big cities, the proportion of reimbursement in other places is relatively low, so we hope that the medical insurance policy can increase the proportion of reimbursement in other places. All kinds of unexpected situations make the cost escalate from time to time and the long-term treatment course brings tremendous physical and psychological pressure and financial burden to the mother of the child. 2 After the child was diagnosed with malignant tumor, the mother of the child from initial suspicion and fear to gradually accept the reality, the treatment process of malignant tumor makes many mothers suffer tremendous. For better treatment, the mother of the child actively seeks treatment information; provides emotional support for the mother of the child, alleviates psychological stress, relieves tension; uses all possible social support systems, reduces the burden of care for the mother of the child, for the patient. Children should create a family environment conducive to treatment and rehabilitation, and encourage their mothers to adopt positive coping styles to better adapt to life and complete the treatment of children.
【学位授予单位】：河北医科大学
【学位级别】：硕士
【学位授予年份】：2017
【分类号】：R473.73
本文编号：2231117
[Abstract]:Objective: Through in-depth interviews with mothers of children with malignant tumors, to understand the care needs of mothers accompanying children during treatment, and to provide targeted support services for mothers of children, so as to reduce the physical and psychological burden of mothers of children with malignant tumors and improve the quality of life of children and families of children with malignant tumors. Methods: From January 2016 to October 2016 in a tertiary general hospital of Hebei Province, the mothers of children with malignant tumors were selected as the research objects, and the mothers of children who met the requirements were selected by purposeful sampling, and semi-structured interviews were conducted. Each interview lasted 30-40 minutes. After the interview, the mother listened to the tape recordings repeatedly and translated the tape recordings into words in time. Results: After the diagnosis of malignant tumors, the mother, as the main caregiver of the children, was confronted with tremendous physical and psychological pressure due to lack of awareness of the disease and uncertainty of the development of the disease. The knowledge and skills of managing children with malignant tumors; the long treatment cycle and easy recurrence of malignant tumors, so that many mothers of children with physical and psychological stress at the same time bear tremendous economic pressure, resulting in corresponding needs. Neglect emotional support and passive seeking behavior support 1 Topic 1: Initial seeking information support 1.1 Seek help from professional medical staff at the early stage of diagnosis, the vast majority of mothers for children with malignant tumors is a strange field, the mother of children with active medical staff to seek treatment of children with cancer, rehabilitation related knowledge, so that the mother of children with cancer. As a medical staff, it is very important to understand the needs of mothers and provide targeted guidance. 1.2 Seeking peer support from peers refers to the mutual help of people with similar diseases or physical conditions in life practice, social and emotional aspects. Mothers who share the same experiences offer help to each other and share information about treatment, which is the most effective form of communication. 1.3 Access to online cancer treatment is a multi-faceted collaborative process, and mothers of children hope. Doctors and nurses in hospitals have a heavy treatment task and are unable to take into account the needs of parents. They often only consult from various websites, but some mothers feel unreliable. 2 Theme 2: Intentional neglect of their emotional needs: personal physical and mental health needs 2.1 Hope to get. Mothers are forced to stop working to take care of their children. They are almost out of touch with society and lack of social roles. The painful experience of treatment is that many mothers feel hopeless and desperate. They especially want to be comforted and understood by others. 2.2 Most of the family support is provided by family members. With the help of material, emotional and information, parents are generally reluctant to tell others about the disease, so the emotional support of mothers comes mostly from the support of their husbands and other family members. 2.3 Neglect of professional psychological counseling and emotional support needs of children with malignant tumor treatment cycle is long, serious complications, suffering from Children's lives are threatened at any time, so that the mothers of accompanying children feel so depressed over a long period of time, especially need professional psychological and social workers to conduct psychological counseling, so that the mother's unhealthy mentality of the children can be adjusted, to create a good family atmosphere for the children, conducive to the recovery of the children's health, but the mother of the children never automatically seek it. Support system, make the body and mind in a state of extreme exhaustion.3 Theme 3: Passive seeking behavior support: social support needs 3.1 economic support needs when children were diagnosed with malignant tumors, due to the duration of the disease, the severity of the illness and the uncertainty of the outcome, children's families bear greater economic pressure, many families spent money. Save, even sell houses and land, high debt, can give birth to hope, these mothers bear physical and mental pressure at the same time bear a huge economic burden. 3.2 With the reform of the medical security system, China has initially constructed a multi-level medical security system, made a historic change in the medical security system. Many parents of newly diagnosed children do not understand the medical insurance policy. Because the treatment of children's tumors is concentrated in Beijing, Shanghai, Guangzhou and other big cities, the proportion of reimbursement in other places is relatively low, so we hope that the medical insurance policy can increase the proportion of reimbursement in other places. All kinds of unexpected situations make the cost escalate from time to time and the long-term treatment course brings tremendous physical and psychological pressure and financial burden to the mother of the child. 2 After the child was diagnosed with malignant tumor, the mother of the child from initial suspicion and fear to gradually accept the reality, the treatment process of malignant tumor makes many mothers suffer tremendous. For better treatment, the mother of the child actively seeks treatment information; provides emotional support for the mother of the child, alleviates psychological stress, relieves tension; uses all possible social support systems, reduces the burden of care for the mother of the child, for the patient. Children should create a family environment conducive to treatment and rehabilitation, and encourage their mothers to adopt positive coping styles to better adapt to life and complete the treatment of children.
【学位授予单位】：河北医科大学
【学位级别】：硕士
【学位授予年份】：2017
【分类号】：R473.73
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