Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

Burden,emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study

This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty‐three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver‐reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index‐Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient‐reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS). The majority of the CBS and CQOLC scores were significantly higher in anxious and depressed caregivers than non‐anxious and non‐depressed caregivers (p < .01 or .05). Caregivers of depressed patients experienced significantly greater emotional distress than those of non‐depressed patients (p < .01). Significantly positive associations were identified among most of the CBS, CQOLC and caregiver HADS scores. Patient LCSS scores were positively correlated with the CBS and caregiver HADS scores, and patient HADS scores were also positively related to caregiver HADS scores. The close interrelationships between caregiver and patient health outcomes provide evidence that lung cancer patients and their caregivers should be viewed as a unit in future supportive service models.     

Beyond expertise: theory,practice and the reflexive practitioner

• ? This paper reconsiders Benner's book From Novice to Expert, in which the expert is portrayed as a reflective practitioner who works intuitively, drawing almost unconsciously on a repertoire of context-specific paradigm cases.
• ? In the light of more recent writings on informal, practice-based theory, it is suggested that there is a sixth level beyond expertise which is characterized by mindful practice and informal theory building. At this level, the practitioner constructs informal theory out of practice, applies that theory back into practice, and reflexively modifies the theory as a result of the changed clinical situation.
• ? Seen in this way, theory and practice are two parts of the same process, and the theory-practice gap is closed.

     

Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in‐depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long‐term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.     

Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.     

Grandparenting: Roles and responsibilities and its implications for kinship care policies

The current literature with regard to grandparents providing care to their grandchildren, whether on an informal basis or when the children are under the auspices of children's protection services (state-mandated intervention), highlights a number of issues or concerns for the caregivers. In the province of Newfoundland and Labrador (Canada), there is a focus on giving priority to grandparents (and significant others) as caregivers, which is embedded in the current child welfare legislation. There appears to be an underlying assumption that grandparents are willing and able to provide such care. However, no research has been completed in order to gain an understanding of some of the dynamics of caregiving by grandparents in this province. The authors are interested in grandparents as potential caregivers, particularly with regard to children who may come under the auspices of children's protection services. In addition, the policies and practices appear to be incongruent with current research, concerns and issues. This province is unique in that it has the fastest-growing senior population, the highest median age for seniors in Canada and has a high number of young families that have moved to other provinces to work. This research will provide insight into the willingness and ability of grandparents to provide care to their grandchildren, whether through informal or formal care (state intervention), as well as implications for current policies and practices.     

卒中患者非正式照顾者的心理健康

卒中的致残率很高，残疾患者通常需要他人照顾。研究表明，非正式照顾者对卒中患者的康复起着非常重要而且不可替代的作用，可在一定程度上降低政府在职业护理上的财政支出。因此，了解非正式照顾者的心理健康状况，探讨影响其心理健康的因素，实施相应的干预措施非常必要。