Caregivers’ interactions with health care services: mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia: a qualitative study

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals (HCPs) in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 HCPs. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from HCPs; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for HCPs and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient

Shared Care, Elder and Family Member Skills Used to Manage Burden

Aim. The aim of this paper is to further develop the construct of Shared Care by comparing and contrasting it to related research, and to show how the construct can be used to guide research and practice. Background. While researchers have identified negative outcomes for family caregivers caused by providing care, less is known about positive aspects of family care for both members of a family dyad. Understanding family care relationships is important to nurses because family participation in the care of chronically ill elders is necessary to achieve optimal outcomes from nursing interventions. A previous naturalistic inquiry identified a new construct, Shared Care, which was used to describe a family care interaction that contributed to positive care outcomes. Methods. A literature review was carried out using the databases Medline, CINAHL, and Psych-info and the keywords home care, care receiver, disability, family, communication, decision-making and reciprocity. The results of the review were integrated to suggest how Shared Care could be used to study care difficulties and guide interventions. Results. The literature confirmed the importance of dyad relationships in family care. Shared Care extended previous conceptualizations of family care by capturing three critical components: communication, decision-making, and reciprocity. Shared Care provides a structure to expand the conceptualization of family care to include both members of a care dyad and account for positive and negative aspects of care. Conclusions. The extended view provided by the construct of Shared Care offers practitioners and scholars tools to use in the context of our ageing population to improve the effectiveness of family care relationships

The relative influence of neighbourhood incivilities, cognitive social capital, club membership and individual characteristics on positive mental health

Previous research indicates that residents׳ perceptions of their neighbourhoods can have an adverse influence on their health and wellbeing over and above the influence of structural disadvantage. Contrary to most prior research, this study employed an indicator of positive wellbeing and assessed the impact of individual characteristics, perceived social and environmental incivilities, indicators of cognitive and structural social capital, and perceived safety. Analyses of data from a large regional UK representative study (n=8237; 69.64% response rate) found the most influential determinants of wellbeing were physical health problems, age, SES and cognitive social capital. Smaller, significant effects were also found for environmental and social incivilities, and for perceived safety. The effect of cognitive social capital was moderated by age, with a stronger effect found among those aged 65 years and over than among younger participants. Findings indicate that the promotion of positive mental health within communities may be facilitated by efforts to foster a greater sense of belonging among residents, and that older adults may benefit most from such efforts

Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review

Background: Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. Method: A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Results: Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. Conclusions: There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being

Healthy ageing and home: The perspectives of very old people in five European countries

This paper reports on in-depth research, using a grounded theory approach, to examine the ways in which very old people perceive healthy ageing in the context of living alone at home within urban settings in five European countries. This qualitative study was part of a cross-national project entitled ENABLE-AGE which examined the relationship between home and healthy ageing. Interviews explored the notion of healthy ageing, the meaning and importance of home, conceptualisations of independence and autonomy and links between healthy ageing and home. Data analysis identified five ways in which older people constructed healthy ageing: home and keeping active; managing lifestyles, health and illness; balancing social life; and balancing material and financial circumstances. Older people reflected on their everyday lives at home in terms of being engaged in purposeful, meaningful action and evaluated healthy ageing in relation to the symbolic and practical affordances of the home, contextualised within constructions of their national context. The research suggests that older people perceive healthy ageing as an active achievement, created through individual, personal effort and supported through social ties despite the health, financial and social decline associated with growing older. The physicality and spatiality of home provided the context for establishing and evaluating the notion of healthy ageing, whilst the experienced relationship between home, life history and identity created a meaningful space within which healthy ageing was negotiated

Changes in self-assessment of continence status between telephone survey and subsequent clinical visit

Aims To explore variance in reporting continence information obtained by telephone survey with face-to-face clinician interview in a clinical setting. Methods As part of a cross-sectional, epidemiologic study of incontinence prevalence among Black and White women aged 35–64 years, randomly selected households were contacted from geographic areas of known racial composition. Of 2,814 women who completed a 20-min, 137-item telephone interview, 1,702 were invited for future components of the study. A subset of these women was recruited for a clinical evaluation that was conducted within a mean of 82 days (SD 38 days) following the interviews. Prior to urodynamics testing, a clinician interview was conducted inquiring about continence status. The criterion for incontinence for both the telephone interview and the clinician interview was constant: 12 or more episodes of incontinence per year. Women whose subjective reports of continence information differed between telephone and clinician interviews were designated as “switchers.” Results Of the 394 women (222 Black and 172 White) who completed the clinical portion, 24.6% (n = 97) were switchers. Switchers were four times more likely to change from continent to incontinent (80.4%, N = 78) than from incontinent to continent (19.4%, N = 19; P  = 0.000) and nearly three times more likely to be Black (69%, N = 67) than White (31%, N = 30; P  = 0.001). Telephone qualitative interviews were completed with 72 of the switchers. The primary reason for switching was changes in women's life circumstances such as variation in seasons, activities of daily living, and health status followed by increased awareness of leakage secondary to the phone interview. Conclusion One-time subjective telephone interviews assessing incontinence symptoms may underestimate the prevalence of incontinence especially among Black women. Neurourol. Urodynam. 29:734–740, 2010. © 2010 Wiley-Liss, Inc.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/77449/1/20827_ftp.pd

Foster Care Placement, Poor Parenting, and Negative Outcomes Among Homeless Young Adults

Although homeless youth with and without foster care histories both face adverse life circumstances, little is known about how these two groups compare in terms of their early histories and whether they face similar outcomes. As such, we compared those with and without a history of foster care placement to determine if the associations between a history of poor parenting and negative outcomes including depression, delinquency, physical and sexual victimization, and substance use, are similar for these two groups. The sample consisted of 172 homeless young adults from the Midwestern United States. Multivariate results revealed that among those previously in foster care, a history of physical abuse and neglect were positively associated with more depressive symptoms whereas sexual abuse and neglect were related to delinquency and physical victimization. Additionally, lower caretaker monitoring was linked to greater delinquent participation. Among those without a history of foster care, physical abuse was related to more depressive symptoms whereas sexual abuse was positively correlated with delinquency, sexual victimization, and substance use. Furthermore, lower monitoring was related to more substance use. Our findings are discussed in terms of a social stress framework and we review the implications of foster care placement for homeless young adults

A psychometric appraisal of positive psychology outcome measures in use with carers of people living with dementia: a systematic review

Objectives: This review aimed (i) to identify all positive psychology measures in use with family carers and (ii) to determine their psychometric properties. Design: Literature searches were made in Ovid MEDLINE, PsychINFO, and Web of Science. The identified measures were then subjected to analysis via an established quality appraisal tool. Results: Twenty-five instruments representing the positive psychology constructs of resilience, self-efficacy, and positive aspects to caregiving were found. Two reviewers independently evaluated the measures using the quality appraisal tool. The Gain in Alzheimer Care Instrument, the Resilience Scale, and the Caregiver Efficacy Scale were found to be the highest scoring measures within their respective constructs. Conclusions: Although some robust instruments were identified, there were numerous examples of important psychometric properties not being evidenced in development papers. Future researchers and clinicians should administer evidence-based outcome measures with adequate psychometric properties representing positive and negative constructs to obtain a comprehensive picture of a person's well-being

Divorce, conflict and mental health: how the quality of intimate relationships is linked to post-divorce well-being

Partner relationships, including new relationships after divorce, are found to be beneficial for mental health. However, the impact of their quality remains unclear; this uncertainty applies to past and ongoing relationships between ex-spouses as well. We study the relationship between conflict—in the prior marriage, with the ex-partner, with a new partner—and both positive and negative mental health. Multilevel linear models are carried out on a subsample of 892 divorcees from the dataset “Divorce in Flanders.” Living together with a new partner, either in marriage or cohabitation, seems beneficial for mental health, even in cases of (high) conflict. Nevertheless, conflict places a burden on well-being, especially for women in non-marital relationships. Ongoing conflict with the ex-spouse is also damaging for mental health. In contrast, prior marital conflict does not relate to lower, but to slightly higher, levels of life satisfaction after divorce