Family experiences of home caring for patients with HIV/AIDs in rural Limpopo Province, South Africa

The increasing rate of patients with HIV/AIDS brings a burden to the already weakened health care delivery systems in Limpopo Province, South Africa. Hospitals alone cannot deal with the needs of AIDS patients effectively; the patients are discharged to be cared for at home. A qualitative study was conducted to explore and describe the experiences of the family members that are caring for patients with HIV/AIDS at home. Interviews were conducted with 12 participants who were purposively selected as the caregivers of patients suffering from AIDS at home. Ethical measures were adhered to for the protection of the participants. The findings revealed that the family members experience negative feelings, characterized by sadness, pain, anger, depression, and frustration, as they care for their loved one within the context of extreme poverty. Quality care was compromised in situations where basic resources were not available. Guidelines to assist families in caring for their loved one with HIV/AIDS at home were developed.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.     

The experience of parents caring for adult children with HIV/AIDS

Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents' caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients

Purpose

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies.

Methods

A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors.

Results

Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors.

Conclusions

Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.     

Can burdened caregivers be effective facilitators of elder care‐recipient health care?

BACKGROUND: Caregiving by informal family caregivers of dependent older people in the community may be affected by burden and by the personal and social resources available to the caregiver. Given the increase in the dependent older population, study of factors affecting informal caregiving is necessary. AIMS: To examine caregiver resources, burden and competence as predictors of health-care facilitation on behalf of older patients. DESIGN: Cross-sectional data were collected by an interview schedule from 240 randomly sampled spousal and filial caregivers in Jerusalem. Study variables included caregiver background variables, general self-concept and feelings of caregiver competence, informal and formal social support, burden and levels of health-care facilitation. Path analysis was performed to clarify the direct and indirect predictors of health-care facilitation. RESULTS: Caregiver facilitation of health-care was positively related both to the presence of personal and social resources and to burden levels. The results suggest that quality caregiving can coexist with burden, provided that ample caregiver resources are present. The most important resources were caregiver sense of competence and support from the professional health-care provider. DISCUSSION: Caregiving burden is not readily reducible, given the chronic nature of older people's health problems. However, caregiver resources can be bolstered, particularly by health professionals. Nurses, who are orientated to holistic family centred care, are especially well-suited for this important intervention.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Relationships Among Perceived Social Support,Family Resilience,and Caregiver Burden in Lung Cancer Families: A Mediating Model

ObjectivesTo identify the factors associated with caregiver burden in Chinese lung cancer families and to detect whether family resilience mediates the effect of perceived social support on caregiver burden.Data SourcesFrom October 2021 to March 2022, a total of 213 family caregivers of patients with lung cancer from a public hospital in Sichuan Province, China, completed the Zarit Burden Interview (ZBI), the Perceived Social Support Scale (PSSS), and the Family Resilience Assessment Scale (FRAS). The Mann-Whitney U test and the Kruskal-Wallis H test were used to identify the influencing factors of family caregiver burden, and the bootstrapping method was conducted to detect the mediating role of family resilience.ConclusionIn this study, family caregiver burden could be influenced by caregiver age, caregivers’ relationships with patients, and patients’ self-care degree; family resilience was found to mediate the relationship between caregivers’ perceived social support and caregiver burden.Implication for Nursing PracticeOur study manifested that factor from both the patients’ and caregivers’ sides could influence caregiver burden of lung cancer family caregivers. The results provide further evidence that lung cancer care should be family-centered, and relevant family-supportive systems should be further developed in this field.     

An experience nursing an intravenous drug user(IDU) with AIDS: applying the family stress model

There is prejudice and fear in society about AIDS, causing the families of AIDS patients to be stigmatized. The number of patients infected with HIV has increased substantially in the past two years as presumably a result of an increase in the sharing of syringes. Intravenous drug users (IDUs) are often isolated from their families, with whom they usually have poor relationships. If they are infected with HIV, it becomes all the more difficult for them to be accepted by their family. The article describes the stress experienced by a family as a result of hospitalization of an IDU with AIDS. The findings from this case report demonstrate three main problems identified from the assessment of Boss's family stress management. These three health-related problems were that the primary caregiver felt exhausted, that communication between parents and children was poor, and that the family's coping ability was compromised. Encouraging positive communication between the client and his mother throughout the period of care enhanced the closeness and harmoniousness of their relationship, as well as the client's sense of security as he approached death. Furthermore, we consulted with social workers in order to facilitate the joint provision of social resources and to assist the family during its crisis.     

艾滋病患者家属心理活动状态的质性研究

目的深入了解艾滋病患者家属心理活动状态,为制订改善艾滋病患者家属心理状态措施提供依据。方法采用质性研究中的现象学研究方法,对4名艾滋病患者家属进行非结构访谈,并用现象学分析法对获得的资料进行分析和整理,提炼出主题。结果提炼出6个关于艾滋病患者家属心理活动状态的主题：怀疑、否认,羞辱和歧视,无助、内疚,恐惧、悲伤,绝望和威胁、报复。结论艾滋病患者家属承受着巨大的心理压力,应加强艾滋病患者家属这一特殊人群的社会心理支持,降低其负性情绪,从而提高艾滋病患者家属的生活质量。     

Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.     

How much should we expect? Family caregiving of AIDS patients in rural Uganda.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.     

癌症患者家庭照顾者负担评估工具的研究进展

癌症患者家庭照顾者负担影响照顾者的生活质量与家庭照顾质量,是影响癌症患者及其家庭照顾者心理健康的重要因素。该文从癌症患者家庭照顾者负担的普适性、特异性评估量表的特性、应用领域等方面对国内外癌症患者家庭照顾者负担评估工具进行综述,分析现有癌症患者家庭照顾者负担评估工具存在的问题并提出建议,以期为建立和应用本土化测评工具提供借鉴,并为开展相关研究提供参考。     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

老年临终患者家属照顾者照顾反应与社会支持的相关性研究

目的探讨老年临终患者家属照顾者照顾反应和社会支持关系。方法采用照顾者反应量表（CRA）和社会支持量表（MOS-SSS）对264例老年临终患者家属照顾者进行调查,并分析照顾反应各维度与其社会支持情况的关系。结果老年临终患者家属照顾者照顾反应自尊维度得分最高,其余消积结果中得分排名依次为时间受打扰、健康问题维度、经济问题维度和家庭支持维度。医疗结果研究的社会支持总分为（58.69±2.44）分,远低于常模标准;照顾反应中自尊维度与社会支持各维度无明显相关;其它各维度均与社会支持总分呈负相关（P〈0.05）。结论在为临终患者及家属照顾者提供临终关怀服务时,应重视社会支持状况与照顾者照顾反应之间的关系,提供针对该群体适合的护理措施,提高老年临终患者家属照顾者的社会支持水平,减轻照顾负荷,从而保障临终患者和照顾者双方的生活质量。     

失能老年人照顾者护理负担的研究

本文介绍了失能老年人家庭照顾者护理负担的概念和研究工具,从照顾者、被照顾者、家庭和社会等主体角度出发,分析了失能老年人家庭照顾者护理负担的影响因素和干预措施,并指出解决失能老年人长期照护问题应依靠家庭、社区、社会组织等力量,有效减轻照顾者护理负担。     

Concepts in Caregiver Research

Purpose: To clarify and delineate conceptualizations of the effects of caregiving for nursing research and practice with family caregivers.
Organizing Construct: The biopsychosocial (psychosocial and physiological) sequelae, both negative and positive, associated with providing care for a relative or friend with a chronic illness.
Methods: Literature reviewed was obtained via searches of CINAHL, MEDLINE, and PsycInfo computerized databases through mid-2002. Key words for the searches were caregiver, caregiving, family caregiving, caregiver burden, and caregiver appraisal. Reports of both earlier reviews of literature and original research were included.
Findings: Negative concepts included caregiver burden, hassles, strain, and stress. Positive concepts included caregiver esteem, uplifts of caregiving, caregiver satisfaction, finding or making meaning through caregiving, and gain in the caregiving experience. A neutral concept for describing the caregiving process is caregiver appraisal. Although earlier studies were focused on negative aspects of caregiving, more recent research has also included positive aspects.
Conclusions: More attention should be given to (a) gender and cultural differences in caregiving, (b) development of flexible interventions, and (c) the biophysical sequelae of caregiving.