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惡性腫瘤患兒母親支持性照護(hù)需求的質(zhì)性研究

發(fā)布時(shí)間:2018-09-08 16:54
【摘要】:目的:通過(guò)對(duì)惡性腫瘤患兒母親的深度訪談,了解患兒母親在陪同患兒治療過(guò)程中的照護(hù)需求,針對(duì)患兒母親的需求為其提供有針對(duì)性的支持服務(wù),從而減輕患兒母親的身體及心理負(fù)擔(dān),提高患兒及患兒家庭的生存質(zhì)量;同時(shí)為醫(yī)務(wù)工作者了解患兒母親的需求并制定相應(yīng)的健康教育提供參考依據(jù)。方法:選取2016年1月至2016年10月于河北省某三級(jí)綜合醫(yī)院小兒外科就診的惡性腫瘤患兒母親為研究對(duì)象,采用目的抽樣的方法選取符合條件的患兒母親,利用半結(jié)構(gòu)化訪談的方法進(jìn)行深入訪談,同時(shí)利用觀察法、筆記法收集惡性腫瘤患兒母親照護(hù)需求的內(nèi)容。每次訪談時(shí)間為30~40分鐘,訪談結(jié)束后反復(fù)聽(tīng)取錄音,并及時(shí)將錄音轉(zhuǎn)化為文字。資料的收集、分析工作同時(shí)進(jìn)行,當(dāng)收集的研究對(duì)象信息飽和時(shí)終止訪談。本研究共納入16例患兒母親。結(jié)果:孩子被診斷惡性腫瘤后,母親作為患兒的主要照顧者,由于缺乏對(duì)疾病的認(rèn)知及疾病發(fā)展的不確定性,面臨著巨大的身體心理壓力;同時(shí)腫瘤長(zhǎng)期治療過(guò)程的艱難與復(fù)雜,使很多母親需要提供護(hù)理患兒的知識(shí)及技能;惡性腫瘤治療周期長(zhǎng)而且易復(fù)發(fā),使很多患兒母親在承受身體及心理壓力的同時(shí)也承受著巨大的經(jīng)濟(jì)壓力,因此產(chǎn)生了相應(yīng)的需求。惡性腫瘤患兒母親支持性照護(hù)需求可概括為三大主題:主動(dòng)尋求信息支持、有意忽視情感支持及被動(dòng)尋求行為支持1主題一:主動(dòng)尋求信息支持1.1求助于專(zhuān)業(yè)醫(yī)務(wù)人員診斷初期,絕大多數(shù)母親對(duì)于兒童惡性腫瘤都是一片陌生的領(lǐng)域,患兒母親主動(dòng)向醫(yī)務(wù)人員尋求有關(guān)兒童腫瘤治療、康復(fù)的相關(guān)知識(shí),使母親對(duì)患兒治療充滿希望,可以增強(qiáng)治療的依從性;作為醫(yī)護(hù)人員,了解患兒母親的需求,提供有針對(duì)性的指導(dǎo),顯得至關(guān)重要。1.2向同伴尋求治療信息同伴支持是指具有相似疾病或身體狀況經(jīng)歷的人們之間在生活實(shí)踐、社會(huì)和情感方面的互相幫助。這些患兒母親是接觸最多的人,她們彼此有同感且共情,所以她們更容易理解和幫助彼此。那些有著相同經(jīng)歷的母親彼此會(huì)提供幫助,分享治療信息,是最有效的一種溝通。1.3求助于網(wǎng)絡(luò)腫瘤治療是一個(gè)多方合作的過(guò)程,患兒的母親希望從各個(gè)方面獲得知識(shí),更有利于患兒的治療與康復(fù)。醫(yī)院醫(yī)生護(hù)士治療任務(wù)很重,無(wú)暇顧及患兒家長(zhǎng)的需求,往往只有從各個(gè)網(wǎng)站咨詢,但有的母親感覺(jué)可信度不高。2主題二:有意忽視自身情感需求:個(gè)人身體心理健康的需求2.1希望得到鼓勵(lì)支持的需求孩子被確診后,為了照顧孩子,母親被迫中止工作,幾乎與社會(huì)脫節(jié),社會(huì)角色的缺如,治療的痛苦經(jīng)歷是很多患兒母親感到絕望無(wú)助,特別希望得到別人的安慰與理解。2.2大多來(lái)自家庭的支持家庭支持就是家庭成員所提供的物質(zhì)、情感和信息等各方面的幫助,患兒父母一般不愿意將患兒疾病告訴別人,因此患兒的母親的情感支持大多來(lái)自丈夫及其他家庭成員的支持。2.3忽視專(zhuān)業(yè)的心理疏導(dǎo)及情感支持的需求兒童惡性腫瘤治療周期長(zhǎng)、并發(fā)癥嚴(yán)重、患兒的生命隨時(shí)受到威脅使陪護(hù)患兒的母親在長(zhǎng)期心情如此壓抑下,特別需要有專(zhuān)業(yè)的心理及社會(huì)工作者進(jìn)行心理疏導(dǎo),使患兒母親的不良心態(tài)得到調(diào)整,為患兒創(chuàng)造一個(gè)良好的家庭氛圍,有利于患兒恢復(fù)健康,但患兒母親從不自動(dòng)尋求支持系統(tǒng),使身心處于極度疲憊狀態(tài)。3主題三:被動(dòng)尋求行為支持:社會(huì)幫扶支持的需求3.1經(jīng)濟(jì)支持的需求孩子被確診為惡性腫瘤時(shí),由于病程的持續(xù),病情的嚴(yán)重及結(jié)果的不確定性,患兒家庭承受著較大的經(jīng)濟(jì)壓力,很多家庭花光了積蓄,甚至賣(mài)房賣(mài)地,債臺(tái)高筑,可為了孩子生的希望,這些母親們?cè)诔惺苌硇膲毫Φ耐瑫r(shí)也承受著巨大的經(jīng)濟(jì)負(fù)擔(dān)。3.2社保政策的需求隨著醫(yī)療保障制度的改革,我國(guó)已初步構(gòu)建了多層次的醫(yī)療保障體系,取得了醫(yī)療保障制度的歷史性轉(zhuǎn)變。很多初診的患兒家長(zhǎng)不了解醫(yī)保政策。還由于兒童腫瘤的治療集中于北京、上海、廣州等大城市,異地報(bào)銷(xiāo)比例相對(duì)比較低,因此希望醫(yī)保政策提高異地報(bào)銷(xiāo)比例。結(jié)論:1腫瘤本身的消耗、手術(shù)及化療的摧殘拖垮了患兒的身體;治療過(guò)程中的各種突發(fā)情況使費(fèi)用時(shí)時(shí)升級(jí)及遙遙無(wú)期的治療療程給患兒母親帶來(lái)了巨大的身體心理壓力及經(jīng)濟(jì)負(fù)擔(dān)。2患兒被確診為惡性腫瘤后,患兒母親從最初的懷疑恐懼到逐步接受現(xiàn)實(shí),惡性腫瘤的治療過(guò)程使很多患兒母親遭受了巨大的痛苦。無(wú)藥可救、必死無(wú)疑等絕望的字眼時(shí)常浮現(xiàn)在眼前。為了孩子接受更好的治療,患兒母親主動(dòng)尋求治療信息;為患兒母親提供情感支持,減輕心理應(yīng)激,緩解緊張狀態(tài);動(dòng)用一切可能的社會(huì)支持系統(tǒng),減輕患兒母親的照護(hù)負(fù)擔(dān),為患兒創(chuàng)造一個(gè)有利于治療和康復(fù)的家庭環(huán)境;鼓勵(lì)患兒母親采用積極的應(yīng)對(duì)方式,更好的適應(yīng)生活,完成患兒的治療。
[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.
【學(xué)位授予單位】:河北醫(yī)科大學(xué)
【學(xué)位級(jí)別】:碩士
【學(xué)位授予年份】:2017
【分類(lèi)號(hào)】:R473.73

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