Community health‐care planning in Western Australian Country Health Service‐South West: An evaluation of patient views

Aims: To investigate community health patients' impressions of care planning and their relationship with allied health professionals in a rural town in Western Australia. Methods: Focus groups were conducted followed by a survey to identify patients' opinions on care planning and their relationships with health professionals. Results: Focus groups and a survey identified that patients generally had positive attitudes towards their experiences with community‐based allied health professionals. Participants identified some of the attributes that they valued in allied health professionals. Many participants (39%) believed that they had a partnership with the health professional and also valued having a shared decision‐making power with the health professional (46%); however, 17% identified that they would prefer the health professional to assume more of the decision‐making power. Conclusions: More work is needed to create a health culture in which patients want to manage their own health and can develop a relationship with their health professional that allows them to achieve this.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Measurement of family‐centred care: translation,adaptation and validation of the Measure of Processes of Care (MPOC‐56 and ‐20) for use in Japan

Background The Measure of Processes of Care (MPOC) that was developed in Canada is a widely used quantitative measure of parents' perceptions of the extent to which family‐centred care is conducted. The purpose of this study was to assess the validity and reliability of the Japanese version of the MPOC. Methods The translation of the MPOC was performed according to international standards for translation of questionnaires. The Canadian validation procedures were followed, consisting of concurrent validity, construct validity and test–retest reliability. The Japanese version of the MPOC was completed by 261 families with children receiving rehabilitation services. Results The Japanese version of the MPOC showed adequate internal consistency with Cronbach's alpha, varying between 0.76 and 0.94. The construct validity was examined with confirmative analysis of each scale structure. Correlations between the MPOC scale scores and satisfaction questions scores were positive, and that to a question about parents' stress was negative. For test–retest reliability, the intraclass correlation coefficients were between 0.76 and 0.89. Conclusions The Japanese version of the MPOC has good psychometric properties and can be recommended for evaluation of the processes of child rehabilitation in Japan.     

Interpersonal Conflict and Health Perceptions in Long-Distance Caregiving Relationships

With job markets expanding globally and life expectancy continually increasing, more demands are being placed on distant relatives to provide care for their aging family members, creating a health care situation known as long-distance caregiving. An online survey explored the relations between negative health perceptions by long-distance caregivers and conflict frequency and conflict strategy usage. The authors observed positive significant relations between distant caregiver negative health perceptions and conflict frequency and usage of the distributive and avoidance conflict strategies. However, they observed no significant associations between distant caregiver negative health perceptions and usage of the two integrative strategies. Implications for long-distance caregiving communication are discussed.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Health status of caregivers of children with cerebral palsy

Background and Aims While a ‘Family‐Centered’ approach to care is accepted as best practice in the context of childhood disability, it may lead to increased demands on family members by requiring them to be active participants in their child's care. This may impact upon the physical and mental health of the caregiver and therefore needs to be investigated. This study aimed to assess the health status of caregivers of children with cerebral palsy (CP) in Ireland and to identify vulnerable subgroups. Methods A cross‐sectional postal survey was conducted using a questionnaire incorporating the SF‐36v2.0. The sample consisted of male and female caregivers of children with CP, representing all levels of ability. Two questionnaires were sent to each child's home; a total of 312 questionnaires were sent to the homes of 156 children. Results Completed questionnaires were returned by 161 caregivers (100 women, 61 men) of 101 children, giving a response rate of 65%. Caregivers of children with CP were found to have poorer health than the Irish general population, for whom normative data exist. Female caregivers had poorer health than male caregivers in both the physical (P < 0.05) and mental health (P < 0.001) domains of the SF‐36. Caregivers spending more time caring had significantly poorer mental health than those spending less time caring (P < 0.05). There was no difference in the health of caregivers of ‘more independent’ versus ‘more dependent’ children, apart from the latter group reporting higher levels of bodily pain (P < 0.05). Conclusion This study provides evidence of the inferior health status of caregivers of children with CP in Ireland, particularly that of women.     

Parent and service providers' perceptions regarding the delivery of family‐centred paediatric rehabilitation services in a children's hospital

Background Family‐centred service (FCS) provision has long since been acknowledged as the ‘best‐practice’ model within paediatric rehabilitation with numerous reported benefits for both the child and their family. Although family‐centred care continues to be investigated worldwide using the Measure of Processes of Care (MPOC) survey, to date only two published studies have been conducted within an Australian context, neither of which were within a hospital setting. As a large number of Australian children attend hospital clinics to receive rehabilitation services, research that investigates FCS within this type of environment is required. This study investigated parent and service providers' perceptions of FCS provision within a large Australian metropolitan children's teaching hospital using the MPOC survey. Methods A total of 100 parents/caregivers (34% response rate) whose child had accessed hospital paediatric rehabilitation services over a 12‐month period completed the MPOC‐20 survey. Thirty‐two completed MPOC‐SP surveys (80% response rate) were received from the hospital's rehabilitation service providers. Qualitative data were sourced from service providers on their understanding of the term FCS. Results Parents' perceptions of FCS provision were generally positive, rating Respectful and Supportive Care the highest and Providing General Information the lowest. No significant differences were indentified in relation to location of residence, type of disability or number of disabilities per child. Service providers also rated Providing General Information the lowest and felt Treating People Respectfully was strength in the provision of services. Extended responses from service providers indicated that although they possessed a sound understanding of the meaning of FCS, delivering flexible and accessible services and fostering effective communication among all partners were not widely expressed themes. Conclusions These results show consistent strengths and weaknesses in FCS provision to children with disabilities and their families and the need to further address the demand for adequate provision of general information.     

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.     

Impacts of care‐giving and sources of support: a comparison of end‐of‐life and non‐end‐of‐life caregivers in Canada

This is the second in a series of papers that deal with care‐giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short‐term, long‐term and end‐of‐life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non‐EOL caregivers (short‐term and long‐term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long‐term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care‐giving experience and the caregiver supports received, while also examining the differences in these across EOL and non‐EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non‐EOL caregivers. The study revealed that with respect to socio‐demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non‐EOL caregivers are experiencing negative impacts from their care‐giving role, comparatively greater supports are needed for EOL caregivers.     

Evaluation of the processes of family‐centred care for young children with intellectual disability in Western Australia

Introduction Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family‐centred care. The aim of this study was to evaluate how well it was being practised, to describe the pattern of service utilization and to identify factors influencing parental perceptions of family‐centred care. Methods The study included children aged 0–6 years with ID, who were registered clients of Disability Services Commission, Western Australia. Parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC‐56) questionnaire. Mean scores for the five MPOC domains were compared using anova against the independent variables of child age group, child diagnostic group, service type and frequency, place of residence, family and demographic variables. Significant variables in each domain were then entered into multivariate analyses. Results Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co‐ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Conclusion Overall respondents reported early intervention services for young children with ID in Western Australia provided satisfactory family‐centred care by means of the 56‐item MPOC. The frequency of contact with allied health professionals was positively associated with parental ratings of family‐centred care. The study indicates under‐servicing in dental care and psychology services.     

Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury

Background

Family caregivers of individuals with stigmatized conditions can experience stigma-by-association and discrimination. Moderate-to-severe traumatic brain injury (TBI) may elicit a stigma response if there are visible physical or neurobehavioral effects of the injury. Stigma is a considerable source of stress and may contribute to caregiver strain and stress-related mental health outcomes. We measured the frequency of perceived stigma and discrimination among caregivers of veterans with TBI and examined whether perceived stigma and discrimination are associated with caregiver strain, social isolation, depression, and anxiety.

Methods

Seventy caregivers of veterans with TBI completed a mailed survey that assessed perceptions of discrimination toward themselves or their care recipient, stigma associated with caregiving, and whether they felt the need to cover up or provide an explanation for their care recipient’s injury. Caregiver strain, social isolation, depression, and anxiety were also assessed via the questionnaire. Multivariate linear regression was used to test the associations between stigma and discrimination measures and outcomes, controlling for potential confounders and other caregiver or care recipient characteristics.

Results

Both perceptions of caregiver discrimination and stigma associated with caregiving were significantly associated with caregiver strain, social isolation, depression, and anxiety. Perceived discrimination against the individual with TBI was associated with caregiver strain and social isolation.

Conclusions

Our findings suggest that perceived discrimination and stigma experienced by caregivers of individuals with TBI are stressors that may lead to poor caregiver mental health outcomes. In order to promote both caregiver and care recipient health, we suggest that mental health support services consider these important stressors.     

The perspective of employers/families and care recipients of migrant live‐in caregivers: a scoping review

In high‐income countries, migrant live‐in caregivers are increasingly in demand to provide health and social care in the home. While there is a wide range of research on the perspectives of live‐in caregivers (including domestic workers) in destination countries, few studies address the perspective of families who hire them. The aim of this study was to explore the extent, range and nature of international literature on the needs and experiences of employers/families and care recipients of live‐in caregivers. We undertook a scoping review of the literature on this topic using Arksey and O'Malley's five stages. With the assistance of a health science librarian, a comprehensive search of nine databases was undertaken from April to July 2014. Two research assistants independently reviewed 2493 articles. The data were analysed through data charting, numerical summary and thematic analysis. Thirteen articles met the inclusion criteria for the scoping review. Many of these studies (n = 7) were conducted in Israel, and the majority (n = 8) focus on elderly care recipients. The findings reveal the diverse roles live‐in caregivers perform, including emotional and physical care; changes in family dynamics and roles upon hiring a live‐in caregiver; the negative experiences, including abuse, of live‐in caregivers and elderly care recipients; the positive outcomes for families with a live‐in caregiver; and families’ common perception that live‐in caregivers are like kin, a part of the family. Furthermore, evidence points to some degree of bi‐directional emotional support between caregivers and employers/families, which adds complexity to their relations and the negotiation of power.     

Health promotion behaviors in Chinese family caregivers of patients with stroke

The purpose of this study was to explore the relationship between and among the caregiver's personal factors, the care recipient's functional status, the caregiver's perceived self-efficacy, social support, reactions to caregiving, and health promotion behaviors in family caregivers of community-dwelling stroke patients in Taiwan. A structured home-interview survey methodology was used to collect data from 134 primary caregivers responsible for care of stroke patients in Taipei, Taiwan. The study results indicated that, in general, caregivers were female spousal caregivers (mean age 52 years, average caregiving period 24 months). Regression analyses revealed that the caregiver's health status was the strongest positive predictor of caregiver self-efficacy. Spousal caregivers with a better-perceived health status were more satisfied with their resources of social supports. Spousal caregivers with poor perceived health status had a higher level of caregiving strain. Results for the overall model indicated caregiver's social support and the care recipient's functional status made significant contributions in explaining the caregiver's health promotion behaviors. Implications for further practice suggest establishing community training programs and support groups for family caregivers.     

Parent and health care professional perspectives on family-centered care for children with special health care needs: are we on the same page?

A family-centered approach to health care for children with special health care needs (CSHCN) is widely acknowledged as the ideal model of service delivery, but less is known about the actual practice of family-centered care (FCC), especially from the viewpoints of parents and health care professionals. This cross-sectional research compared parent and health care professional perspectives on the degree to which FCC is being provided at a large, urban hospital in the United States. The Measure of Process of Care (MPOC) was administered to a representative sample of 92 parents of CSHCN; a convenience sample of 43 health care professionals completed the service provider version of the MPOC. A mixed-model analysis of variance was conducted to test for group differences on matched domain scores of the MPOC. No significant differences emerged between the two stakeholder groups, but significant differences were detected among the four domain scores. The data suggest that health professionals are generally meeting families' needs for specific communication and are respectful of parents' expertise. However, parents and professionals alike indicated the need for continued professional growth in the area of providing holistic, comprehensive services to advance FCC.     

Development of a measure of family-centred care for resource-poor South African settings: the experience of using a modified version of the MPOC-20

Background The Measure of Processes of Care (MPOC) is a widely used tool to assess parents' self‐reported experiences of family‐centred behaviours of paediatric rehabilitation services. It has never been used in resource‐constrained settings or in a cross‐cultural environment where cultural and language differences may complicate effective implementation of family‐centred services. In this study, the MPOC‐20 was used as the starting point for the development of a measure of family‐centred care in disadvantaged South African settings. The objective was to establish to what extent the MPOC‐20 needed to be adapted for these settings. Methods After modifying MPOC‐20 through focus groups, the adapted scale was translated into six local languages. Trained interviewers administered the scale to a convenience sample of 267 caregivers of children aged between 1 and 18 years with a diagnosis of cerebral palsy living in poorly resourced areas in two provinces in South Africa. Results The modified MPOC‐20 was neither reliable nor valid in the new setting. Cronbach's alpha for each of the sub‐scales varied between 0.30 and 0.66 while for the test–retest reliability, the Intraclass Correlation Coefficients were between 0.51 and 0.61. The first two criteria for item convergent validity were not met. Repeated multi‐trait scaling identified eight items that when combined into a scale [named the MPOC‐8(SA)] had acceptable reliability and validity. Factor analysis of the MPOC‐8(SA) yielded two factors: an interpersonal factor and an informational factor. Conclusions Although extreme caution has to be used when using measures created in one socio‐cultural setting in a different context, the MPOC‐20 provides a useful starting point for the development of a measure of family‐centred care in a poor resourced setting. Caregivers in different settings have more in common than they have differences. However, the process of asking the questions and the words used to capture caregivers' experiences needs to be different.