Evaluation of a continuing educational intervention for primary health care professionals about nutritional care of patients at home

Objective

Evaluate the effectiveness of a continuing educational intervention on primary health care professionals’ familiarity with information important to nutritional care in a palliative phase, their collaboration with other caregivers, and their level of knowledge about important aspects of nutritional care.

Design

Observational cohort study.

Setting

10 primary health care centers in Stockholm County, Sweden.

Participants

140 district nurses/registered nurses and general practitioners/physicians working with home care.

Intervention

87 professionals participated in the intervention group (IG) and 53 in the control group (CG). The intervention consisted of a web-based program offering factual knowledge; a practical exercise linking existing and new knowledge, abilities, and skills; and a case seminar facilitating reflection.

Measurements

The intervention’s effects were measured by a computer-based study-specific questionnaire before and after the intervention, which took approximately 1 month. The CG completed the questionnaire twice (1 month between response occasions). The intervention effects, odds ratios, were estimated by an ordinal logistic regression.

Results

In the intra-group analyses, statistically significant changes occurred in the IG’s responses to 28 of 32 items and the CG’s responses to 4 of 32 items. In the inter-group analyses, statistically significant effects occurred in 20 of 32 statements: all 14 statements that assessed familiarity with important concepts and all 4 statements about collaboration with other caregivers but only 2 of the 14 statements concerning level of knowledge. The intervention effect varied between 2.5 and 12.0.

Conclusion

The intervention was effective in increasing familiarity with information important to nutritional care in a palliative phase and collaboration with other caregivers, both of which may create prerequisites for better nutritional care. However, the intervention needs to be revised to better increase the professionals’ level of knowledge about important aspects of nutritional care.

     

Caregiver Perspectives During the Post Inpatient Hospital Transition: A Mixed Methods Approach

Background

Knowledge of caregiver perspectives of their psychosocial resources and needs during the post inpatient psychiatric hospitalization is limited. Examining caregivers’ perspectives of the transition period may be a critical step in improving the transition success of children with emotional and behavioral disorders. Using quantitative and qualitative methods, we investigated the psychosocial resources and needs of caregivers after a child inpatient hospitalization.

Objective

This study sought to examine the psychosocial resources of caregivers of children leaving intensive psychiatric care and participating in a post-inpatient transition program, and to describe their reported needs at home and school.

Methods

Forty-four caregivers were recruited from the child and adolescent psychiatric inpatient units of two hospitals (one urban, one suburban). We utilized a partially mixed concurrent equal status design for mixed-methods analysis. Qualitative data were analyzed using consensual qualitative research methodology.

Results

Caregivers reported high levels of strain, child symptomatology, and low levels of empowerment and social support. Their satisfaction with school and mental health services were mixed. Caregivers identified a need for increased knowledge of behavior management strategies, improved caregiver/child relationship, more emotional support, and increased access to services for their children. Areas of concern in the school setting included social–emotional functioning, learning, access to school services, and advocacy.

Conclusion

These findings expand our knowledge of caregivers’ psychosocial resources and needs during their children’s inpatient psychiatric hospitalization and subsequent transition to home and school. As research in this area develops, we suggest that incorporating caregivers’ needs into transition planning may result in more effective and acceptable interventions for families.

     

The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

Background

The nature of amyotrophic lateral sclerosis (ALS) is progressive and degenerative, thus influencing individuals physically, emotionally, and socially. A broad review of qualitative studies that describe the personal experiences of people with ALS with physiotherapy, occupational therapy and speech and language pathology interventions, and how those affect QoL is warranted.

Purpose

This study synthesizes qualitative research regarding the potential that rehabilitation interventions have to maintain and/or improve QoL from the perspective of people with ALS.

Methods

The SPIDER search strategy was applied and five articles met inclusion criteria addressing the perceived impact of rehabilitation on QoL for individuals with ALS.

Results

Four themes emerged: the concept of control; adapting interventions to disease stage; struggles with interventions; and barriers between healthcare providers and patients.

Conclusions

Rehabilitation interventions were perceived to have potential to support QoL by people with ALS. Advantages and limitations of rehabilitation services within this population were identified.

     

Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers

Objective

The influence that social conditions and personal attitudes may have on the quality of life (QoL) of Parkinson’s disease (PD) patients and informal caregivers does not receive enough attention in health care, as a result of it not being clearly identified, especially in informal caregivers. The aim of this study was to provide a comprehensive analysis of psychosocial adjustment and QoL determinants in PD patients and informal caregivers.

Methods

Ninety-one PD patients and 83 caregivers participated in the study. Multiple regression analyses were performed including benefit finding, coping, disease severity and socio-demographic factors, in order to determine how these aspects influence the psychosocial adjustment and QoL in PD patients and caregivers.

Results

Regression models showed that severity of PD was the main predictor of psychosocial adjustment and QoL in patients. Nevertheless, multiple regression analyses also revealed that coping was a significant predictor of psychosocial adjustment in patients and caregivers. Furthermore, psychosocial adjustment was significantly related to QoL in patients and caregivers. Also, coping and benefit finding were predictors of QoL in caregivers but not in patients.

Conclusions

Multidisciplinary interventions aimed at improving PD patients’ QoL may have more effective outcomes if education about coping skills, and how these can help towards a positive psychosocial adjustment to illness, were included, and targeted not only at patients, but also at informal caregivers.

     

Relationship between Mastery and Caregiving Competence in Protecting against Burden,Anxiety and Depression among Caregivers of Frail Older Adults

Objective

Studies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs.

Design, Setting and Participants

This is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively.

Measurements

We performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome.

Results

Mastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery.

Conclusion

Our findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other’s effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

     

Perceptions of healthcare professionals on the usage of percutaneous endoscopic gastrostomy in a teaching hospital from a middle-income South East Asian country

Objective

To explore the perceptions of healthcare professionals’ (HCPs) in a South East Asian nation towards percutaneous endoscopic gastrostomy (PEG) feeding.

Design

Semi-structured, qualitative interviews.

Settings

A teaching hospital in Kuala Lumpur, Malaysia.

Participants

A total of 17 healthcare professionals aged 23-43 years, 82% women.

Results

Thematic analysis revealed five themes that represent HCPs’ perceptions in relation to the usage of PEG feeding: 1) knowledge of HCPs, 2) communication, 3) understanding among patients, and 4) financial and affordability.

Conclusion

The rationale for reluctance towards PEG feeding observed in this regions was explained by lack of education, knowledge, communication, team work, and financial support. Future studies should assess the effects of educational programmes among HCPs and changes in policies to promote affordability on the utilization of PEG feeding in this region.

     

Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study

Purpose

To examine caregivers’ health-related quality of life (HRQoL) and well-being during the first 3 years after their family member’s Alzheimer’s disease (AD) diagnosis and assessed the relationship between caregivers’ HRQoL, well-being, and the severity of AD. Further, to compare of caregivers’ HRQoL to general population.

Methods

Longitudinal design (36 months) after AD diagnosis of 236 caregiver–patient dyads. Linear regression was used to assess age- and gender-adjusted association between repeated measurements of caregivers’ HRQoL and the severity of AD. For comparison with general population, the National Health 2011 Health Examination Survey data was utilized.

Results

Caregivers had significantly lower HRQoL than age- and gender-standardized counterparts. Severity of AD was significantly (p < 0.05) associated with the mobility and depression dimensions of caregiver’s HRQoL but not with the total HRQoL index score.

Conclusions

Caregivers’ HRQoL seems to deteriorate earlier than previously noted. The severity of AD has not that great impact on caregiver’s HRQoL as assumed.

     

Neurocognitive disorders: what are the prioritized caregiver needs? A consensus obtained by the Delphi method

Background

The symptoms related to neurocognitive disorders (NCD) may lead to caregiver burden increase. Involving caregivers in research may be an effective way of improving the practicalities and relevance of interventions. The aim of this study was to gather opinion and gain consensus on the caregivers ‘priorities, using a Delphi method and including aspects of needs in pharmaceutical dimension.

Methods

Observational study using a modified Delphi method. This study was conducted in the Clinical and Research Memory Center of the University Hospital of Lyon (France), between September 2015 and January 2016. The expert panel was composed of 68 informal caregivers of people with subjective cognitive decline or NCD living at home.

Results

Caregivers assigned a very high importance to the dimension “information needs about their relative’s disease”, i.e. information on the disease, the treatment and the research; and to “coping skills”, i.e. skills related to emotional support, communication, relationship evolution with the relative and skills to cope with behavioural crisis, behavioural and cognitive disorders. The aspect “coping with behavioural disorders” received a high selection rate (83%).

Conclusions

The main needs selected can be used to design relevant interventions and give guidance to policy to support caregivers. To meet caregiver’s needs, interventions should focus on information about disease and treatment and psychoeducational interventions.

     

Perceptions about Iranian-Kurds’ ethnic-inequality in health

Background

Evidence shows ethnic-inequality is a very effective variable in the Community and individual health associated outcomes. This study focused on gaining a deeper understanding of people’s perception on inequality of health in Iranian-Kurds and its determinants.

Methods

The study was conducted in the three cities of Marivan, Sanandaj (capital of Kurdistan province in Iran) and Tehran (capital of the country). The study was conducted through 34 in-depth interviews and ten focus group discussions with health services users, academic graduates and health delivery service personnel.

Results

Consensus on social, mental and physical health inequality did not exist within the study participants. However, there were concerns about differences in healthcare access and utilization. Several participants believed that access to health services and socio-cultural differences of Kurds affected the healthcare utilization.

Conclusions

Since, people perceived ethnic-inequality in healthcare access and utilization, ethnicity must be considered as a mandatory stratifier in monitoring health status and a concern during planning health interventions. People’s awareness, resources management and allocation are factors requiring more consideration when choosing policy options.

     

Use of health resources and healthcare costs associated with frailty: The FRADEA study

Background

Frailty is associated with adverse health outcomes, but its association with hospital healthcare costs has not been analyzed. The main objective was to estimate the adjusted annual costs and use of hospital healthcare resources in frail older adults compared to non frail ones.

Design

FRADEA Study. Mean follow-up 1044 days (SD 314).

Setting

Albacete city, Spain.

Participants

830 adults ≥70 years.

Measurements

Age, sex, comorbidity measured with the Charlson index and Fried´s Frailty phenotype as independent variables, and use of hospital resources (hospital admissions, emergency visits, and specialist visits), and hospital healthcare costs as outcome variables. Outcome data were collected from Minimum Data Set of the Complejo Hospitalario Universitario Albacete. The cost base year was 2013. Logistic regression and two-part models were used to analyze the association between frailty and the use of healthcare resources. Generalized Linear Models were applied to estimate the impact of frailty and comorbidity on the healthcare costs.

Results

The average cost associated with the use of health resources was 1,922€/year. Frail participants had an average total cost of health resources of 2,476€/year, pre-frail 2,056€/year, and non-frail 1,217€/year. 67% of the total health cost was associated with hospital admission cost, 29% with specialist visits cost and 4% with emergency visits cost. Frailty and comorbidity were the most important factors associated with the use of hospital healthcare resources. Adjusted healthcare costs were 592€/year and 458€/year greater in frail and pre-frail participants respectively, compared to non-frail ones, and having a Charlson index ≥ 3, was associated with an increased costs of 2,289€/year.

Conclusion

Frailty and comorbidity are meaningful and complementary associated with increased hospital healthcare resources use, and related costs.

     

Pilot Randomized Trial of a Family Management Efficacy Intervention for Caregivers of African American Adolescents with Disruptive Behaviors

Background

Caregivers of adolescents diagnosed with Oppositional Defiant Disorder and/or Conduct Disorder (ODD/CD) experience unique challenges when interacting with child service systems involved in their adolescents’ care. Absent from the literature are interventions to improve these interactions, which in the long term may improve adolescent behavioral health outcomes.

Objective

To examine feasibility/acceptability of Family Management Efficacy (FAME) intervention content, structure, delivery, and appropriateness of selected measures for caregivers of African American adolescents with ODD/CD. Secondary aim was to explore changes in FAME caregivers’ interaction self-efficacy, stress, quality of life, and family functioning scores relative to caregivers receiving treatment as usual (TAU).

Method

A pilot two-group randomized trial was conducted with caregivers of African American adolescents (ages 12–18 years) diagnosed with ODD/CD receiving FAME (n?=?11) or TAU (n?=?9). Feasibility outcomes of enrollment/attrition, measurement completion, session attendance, and homework completion were assessed using tracking logs and field notes, and acceptability through caregiver satisfaction scores and interviews. Preliminary outcomes were assessed at baseline, post- and 2-months post intervention.

Results

FAME was highly acceptable and met a priori thresholds for feasibility in enrollment (56%), attrition (35%), caregiver attendance (55%), and homework completion (50%), with lower than anticipated kin attendance (42%) and measurement completion (55%). Preliminary outcomes suggest FAME may benefit caregivers in areas of family communication, cohesion, and quality of life, but lacked observed benefit for self-efficacy and problem solving indicating need for refinement.

Conclusion

Results inform changes to FAME content, measurement, and delivery schedule in preparation for a fully powered randomized controlled trial.

     

Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe

Objectives

Our goal was to provide data on the economic burden and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and their caregivers in Europe.

Methods

A cross-sectional study was carried out on adults and children with CF in eight European countries. Patients completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and presence of a caregiver. Costs were calculated with a bottom-up approach using unit costs from each participating country, and HRQOL was assessed using EQ-5D. The principal caregiver also answered a questionnaire on their characteristics, HRQOL and burden.

Results

A total of 905 patients with CF was included (399 adults and 506 children). The total average annual cost per patient varied from €21,144 in Bulgaria to €53,256 in Germany. Adults had higher direct healthcare costs than children, but children had much higher informal care costs (P < 0.0001). Total costs increased with patients’ level of dependence. In adults, mean utility fell between 0.640 and 0.870, and the visual analogue scale ranged from 46.0 to 69.7. There was no difference in caregiver HRQOL regardless of whether they cared for an adult or a child. However, caregivers who looked after a child had a significantly higher burden (P = 0.0013).

Conclusions

Our study highlights the burden of CF in terms of costs and decreased HRQOL for both patients and their caregivers throughout Europe.

     

Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe

Objective

To estimate the social/economic costs of fragile X syndrome (FXS) in Europe and to assess the health-related quality of life (HRQOL) of patients and caregivers.

Methods

A cross-sectional study was conducted in a sample of European countries. Patients were recruited through patients’ associations. Data on their resource use and absence from the labour market were retrospectively obtained from an online questionnaire. Costs were estimated by a bottom-up approach and the EuroQol-5 Domain (EQ-5D) questionnaire was used to measure patients’ and caregivers’ HRQOL.

Results

Five countries were included in the analysis. The mean annual cost of FXS per patient varied from €4951 in Hungary to €58,862 in Sweden. Direct non-healthcare costs represented the majority of costs in all countries but there were differences in the share incurred by formal and informal care among those costs. Costs were also shown to differ between children and adults. Mean EQ-5D utility score for adult patients varied from 0.52 in France (n = 42) to 0.73 in Hungary (n = 2), while for caregivers this score was consistently inferior to 0.87.

Conclusion

Our findings underline that, although its prevalence is low, FXS is costly from a societal perspective. They support the development of tailored policies to reduce the consequences of FXS on both patients and their relatives.

     

Attachment Styles in Children Living in Alternative Care: A Systematic Review of the Literature

Background

A large number of children are currently living in Alternative Care. The relationship they establish with their temporary caregivers can play a significant role in their development. However, little has been published regarding attachment with temporary Caregivers.

Objective

The aim of this review is to analyse the existing published studies regarding attachment styles in children living in alternative care (Children’s Homes and Foster Care). The review analyses rates of attachment styles and associated factors (including characteristics of settings, children and caregivers) in both settings.

Methods

A systematic literature review was conducted searching electronic databases for peer reviewed publications in different languages. Studies considering attachment in children living in Children’s Homes or Foster families at the time of the study were included.

Results

Overall, 18 articles reporting 13 studies met the inclusion criteria. The results are presented in terms of characteristics of the studies, rates of attachment in different settings and possible mediating factors. Implications for practice and research are discussed.

Conclusions

Attachment styles in children living in alternative care differ from those observed in children living with biological or adoptive families, however several factors can mediate this outcome (including characteristics of settings, children and caregivers). Most research has been conducted in Europe and USA. Therefore, further research is needed in less developed countries in order to guide local policies for better care.

     

Stakeholders’ Perspectives on Communication and Collaboration Following School Reintegration of a Seriously Ill Child: A Literature Review

Background

Reintegration into school is a decisive time for children who have been absent from school due to health problems, such as survivors of brain tumours and other types of acquired brain injury or cancer in childhood. Parents, school staff and healthcare providers are important stakeholders during this phase of transition.

Objective

To study the perspectives of parents, school personnel and healthcare providers on communication and collaboration following the child’s return to school, to gain insight into their experiences, and to develop recommendations for each stakeholder.

Method

We reviewed the literature on school reintegration in accordance with the configurative approach for research synthesis. Search and selection processes ended in 22 articles published between January 2000 and September 2015, consisting of quantitative, qualitative or mixed methods research. Data analysis resulted in themes with emphasis on communication and collaboration.

Results

Knowledge about the child’s condition, education and support are the main topics of consultation between parents, school personnel and healthcare providers. Based on their experiences, practices of communication and collaboration are variable and mostly inadequate. They report clear and complementary needs and expectations on how to effectively work together. Especially the need for a school liaison as connection between family, education and healthcare is commonly discussed.

Conclusion

The often suboptimal communication and collaboration between parents, school personnel and healthcare providers needs more coordination and consistency, starting from the child’s return to school. In addition, all stakeholders should be aware of related factors that facilitate or hinder the child’s reintegration process.

     

Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Purpose

Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain.

Methods

Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales.

Results

Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden.

Conclusions

Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.

     

Cost-effectiveness analysis of the diarrhea alleviation through zinc and oral rehydration therapy (DAZT) program in rural Gujarat India: an application of the net-benefit regression framework

Background

This study evaluates the cost-effectiveness of the DAZT program for scaling up treatment of acute child diarrhea in Gujarat India using a net-benefit regression framework.

Methods

Costs were calculated from societal and caregivers’ perspectives and effectiveness was assessed in terms of coverage of zinc and both zinc and Oral Rehydration Salt. Regression models were tested in simple linear regression, with a specified set of covariates, and with a specified set of covariates and interaction terms using linear regression with endogenous treatment effects was used as the reference case.

Results

The DAZT program was cost-effective with over 95% certainty above $5.50 and $7.50 per appropriately treated child in the unadjusted and adjusted models respectively, with specifications including interaction terms being cost-effective with 85–97% certainty.

Discussion

Findings from this study should be combined with other evidence when considering decisions to scale up programs such as the DAZT program to promote the use of ORS and zinc to treat child diarrhea.