Reducing burnout in mothers with an intellectually disabled child: an education programme

Title. Reducing burnout in mothers with an intellectually disabled child: an education programme. Aim. This paper is a report of a study conducted to examine the effect of participating in an education program on burnout for mothers of children with an intellectual disability. Background. Mothers with an intellectually disabled child are prone to suffer from excessive stress and burnout. There is limited evidence for the effectiveness of education interventions aimed at reducing burnout levels in this population. Methods. After baseline screening, mothers who agreed to participate (n = 90) were randomized to an intervention or control group. The intervention group participated in an interactive education programme for 1 hour, in addition to using an educational booklet designed and presented by the researchers. The booklet contained information about the characteristics of intellectually disabled children, the specific health care and education they require, non‐profit organizations and foundations providing assistance, and ways in which mothers can cope with stress. The control group received the same intervention separately after completing the post‐test. The study was carried out from 2004 to 2005. Findings. Intervention group members reported fewer episodes of emotional burnout compared to the control group, indicating that participation in a nursing education programme reduced the level of burnout experienced by mothers who have an intellectually disabled child. There were no effects of the education programme on perceptions of personal success, i.e. mother’s feelings of competence and successful achievement in care of their intellectually disabled child. Conclusion. Nurse‐administered education should be provided for mothers who have an intellectually disabled child in order to reduce the degree of emotional burnout that these mothers typically experience.     

The experiences of primary caregivers raising school‐aged children with attention‐deficit hyperactivity disorder

Aims and objectives. To understand the experiences of primary caregivers who are bringing up school‐aged children with attention‐deficit hyperactivity disorder. The research findings will help address the problems related to caring for school‐aged children with attention‐deficit hyperactivity disorder. Background. In Taiwan, the rate of school‐aged children diagnosed with attention‐deficit hyperactivity disorder ranges from 7·9–11·7%. This study is the first, which tries to understand the experiences of primary caregivers who are bringing up school‐aged children with attention‐deficit hyperactivity disorder in Taiwan. Design. The study used a qualitative phenomenological approach to explore the experiences of caregivers raising school‐aged children with attention‐deficit hyperactivity disorder. Methods. Purposive sampling and in‐depth, face‐to‐face interviews were used to collect data. The unstructured interview guide allowed the major caregivers to express their experiences of raising school‐aged children with attention‐deficit hyperactivity disorder. When data saturation was reached, the sample size comprised 12 major caregivers. Narratives were analysed according to Colaizzi’s seven‐step method. Results. Three themes and seven sub‐themes emerged from this study: the burdens of caring (parenting burdens, emotional burdens and family conflicts), the lack of adequate support systems (lack of support from professionals, spouses and other family members) and the mechanisms of coping (cognitive coping strategies and social coping strategies). Furthermore, several other factors that affected the caregivers of children with attention‐deficit hyperactivity disorder are also revealed in the study. Conclusion. The findings of the study demonstrate the importance of understanding the experiences of primary caregivers, bringing up school‐aged children with attention‐deficit hyperactivity disorder. Improving professional services in family care should be a major concern for all healthcare professionals. Relevance to clinical practice. The recommendations that have been made based on the findings of this research can be used as a guide to improve the delivery of caring by people who have school‐aged children with attention‐deficit hyperactivity disorder and by the wider family.     

Support interventions for caregivers of physically disabled adults: A systematic review

In developing countries family caregivers are an important community‐based resource who provide care for physically disabled adults. Substantial caregiving commitment is known to adversely affect caregiver health and thereby their capacity to provide ongoing care. This systematic review focused on support interventions for caregivers using Thailand as an example. From 1964 to 2011 international and Thai electronic databases and relevant grey literature were searched. Six English papers and 34 Thai papers published between 1990 and 2010 were found. The Critical Appraisal Skills Programme (CASP) tool was modified to appraise methodological quality. All nurse‐led interventions mainly focused on improving caregiving capacity; nearly half considered caregiver health. Only 15 interventions were community‐based. Despite variable research quality all studies showed benefits for caregivers, care recipients, and healthcare services. In developing countries without healthy caregivers physically disabled adults would not receive care. There is an urgent need for further investment in community‐based research to develop effective interventions designed to promote caregiver health and help them maintain their role.     

Predictors of Health-Related Quality of Life in Chinese Caregivers of Children With Autism Spectrum Disorders: A Cross-Sectional Study

The purpose of this study was to identify the predictors of health-related quality of life (HRQOL) among caregivers of children with autism spectrum disorders (ASD) in China. Two hundred and seventy-three caregivers were surveyed using questionnaires on HRQOL, family functioning, coping style, social support, and caregiver burden. Besides socio-demographic characteristics of children with ASD and their caregivers, results demonstrate that family functioning, coping style, social support, caregiver burden are predictors of HRQOL in caregivers of children with ASD, and these predictors correlated with each other. These results indicate that comprehensive intervention, which focuses on improving caregivers' coping strategies, social support (especially from family members and friends) and family functioning, and on releasing caregiver burden, should be provided to caregivers of children with ASD.     

The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43). Despite the higher prevalence of symptoms, they did not access healthcare services more and may seek healthcare for psychological distress less often (0.64; 0.40, 1.02). In general, socioeconomic disadvantage was associated with worse health. Pakistani ethnicity (versus white British) and prenatal consultation were strongly associated with higher postnatal consultation rates. Prenatal ill health, healthcare use and socioeconomic status are important factors in the detection of postnatal ill health via primary care services. If caregiver burden and the risk of under-detecting (and thus under treating) caregiver ill health is not addressed during the preschool period health inequalities between caregivers and other mothers and their families may persist and grow. The health of mothers of young disabled children, in particular their unmet health needs, warrants attention in research and clinical practice.

     

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.     

脑瘫患儿家庭主要照顾者负担及影响因素分析

目的探讨影响脑瘫患儿家庭主要照顾者负担的因素。方法应用一般资料调查问卷、Zarit照顾者负担量表和社会支持评定量表对120例脑瘫患儿主要照顾者进行问卷调查。结果脑瘫患儿家庭主要照顾者承受的负担总分为(40.94±10.27)分,表示存在中度负担;社会支持总分为(32.51±5.57)分,表示社会支持度较低。家庭主要照顾者负担受脑瘫患儿的瘫痪程度、自付医疗费用占家庭总收入比、社会支持总分的影响。结论脑瘫患儿家庭主要照顾者普遍承受着不同程度的负担,政府及社会应通过多种形式和渠道降低脑瘫患儿家庭医疗费用的支出,加强和完善脑瘫患儿社区康复以及家庭主要照顾者社会支持网络,以降低照顾者负担水平,提高照顾者生活质量。     

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Little is known about the burden of cross‐cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall‐sense‐of‐burden‐from‐caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.     

Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease

Aim. This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. Background. People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3–5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers’ experiences of the body have been neglected. Method. An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face‐to‐face, semi‐structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. Findings. Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body – how the disease affected the patient and caregivers; the dependent body – the resulting care requirements; and the social body – how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. Conclusion. The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care.     

Factors associated with ‘caregiver burden’ for atrial fibrillation patients

Background: The burden on caregivers providing support to atrial fibrillation (AF) patients has not been evaluated. Objective: To examine the interrelationship between unpaid caregiver, patient and thromboprophylaxis characteristics and caregiver burden in AF. Methods: We conducted a cross‐sectional survey study of AF patient‐caregiver dyads recruited from cardiology clinics at an urban teaching hospital. Eligible patients had a diagnosis of AF, received thromboprophylaxis to prevent stroke, lived in the community and had an adult, unpaid, English‐speaking caregiver. Hierarchical multivariate regression was used to evaluate the association between caregiver, patient and thromboprophylaxis characteristics and caregiver burden as measured by the ‘Caregiver Reaction Assessment’ (CRA). Results: Eighty patient‐caregiver dyads were surveyed. The mean ± standard deviation scores for each CRA domain were ‘Disrupted schedule’ (2.4 ± 1.0), ‘Financial problems’ (2.1 ± 0.8), ‘Lack of family support’ (1.9 ± 0.7), ‘Health problems’ (1.9 ± 0.7) and ‘Self‐esteem’ (0.9 ± 0.5). Significantly greater caregiver burden due to ‘Disrupted schedule’ was seen in those spending > 4 h/week providing care and when caring for frail, sick or disabled patients, with higher CHADS2 scores and requiring help with their medications. ‘Financial problems’ burden scores were significantly associated with caring for frail patients and those requiring more frequent office follow‐up. ‘Lack of family support’ scores were inversely associated with having somebody else to help provide care and increased as patients CHADS2 score increased. Lower ‘Health problem’ burden scores were associated with female gender and higher scores with the need to spend > 4 h/week providing care. Conclusion: The greatest burden to caregivers of AF patients occurs due to schedule disruption.     

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.     

沿海地区失能老年人家庭照护品质与照护者社会支持的相关研究

目的:探讨沿海地区失能老年人居家照护品质与照护者社会支持系统的相关性。方法:采用分层整群随机抽样法,收集唐山市沿海地区2 155名失能老年人及其家庭照顾者的一般情况,应用失能老年人家庭照护品质量表、社会支持量表进行不同维度测评,应用方差分析法对不同分级社会支持的照护品质单项评分和总分进行比较,应用Pearson相关分析法分析失能老年人家庭照护品质与社会支持的相关性。结果:照护者高水平与低水平社会支持的照护品质各单项评分及总分相比较,差异均有统计学意义(P<0.01),高水平与中等水平社会支持比较,除水分获得、家庭成员的需求满足2项评分,其余项目差异均有统计学意义(P<0.01);中水平与低水平社会支持比较,除去舒适程度、皮肤的完整性、照顾者与残病老人的关系品质、照护者获得个人成长、照顾者情绪的影响5项,其余项目差异均有统计学意义(P<0.01)。失能老年人家庭照护品质评分与照护者的社会支持程度呈正相关(r=0.608,P<0.01)。结论:照护者受社会支持程度影响失能老年人家庭照护品质,注重照护者的社会支持,提高失能老年人家庭照护质量。     

白血病患儿母亲焦虑状态与社会支持的相关性研究

[目的]调查白血病患儿母亲的焦虑状态及社会支持现状。[方法]采取便利抽样方法,对2008年3月-4月在某儿童医院血液病中心住院治疗的白血病患儿母亲62名进行问卷调查。[结果]白血病患儿母亲轻度焦虑,社会支持为中高水平,惠儿病情轻、重对焦虑的影响有统计学意义,家长的文化程度、职业、家庭收入对社会支持的影响有统计学意义,社会支持得分高低对其焦虑状态有直接影响,社会支持总分、客观支持、主观支持、对支持利用度3个维度与焦虑状态呈负相关（P〈0．05）。[结论]社会支持对减轻白血病患儿母亲的焦虑有积极作用,应帮助母亲建立有效的支持系统,加大对母亲的支持力度,对于患儿病情重且无职业、文化程度低、低收入的母亲,尤其应给予更多的社会支持。     

MENTAL HEALTH OF MOTHERS CARING FOR VENTILATOR-ASSISTED CHILDREN AT HOME

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.     

Mental health of mothers caring for ventilator-assisted children at home

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.