Occupational therapists' attitudes toward family -centered care

The purpose of this study was to examine pediatric occupational therapists attitudes towards family-centered care. Specific attributes identified by the literature (professional characteristics, educational experiences and organizational culture) were investigated to determine their influence on these attitudes. Study participants were 250 pediatric occupational therapists who were randomly selected from the American Occupational Therapy Association special interest sections. ^ Participants received a mail packet with three instruments to complete and mail back within 2 weeks. The instruments were (a) the Professional Attitude Scale, (b) the Professional Characteristics Questionnaire, and (c) the Family-Centered Program Rating Scale. There was a 50% return rate. Data analysis was conducted in SPSS using descriptive statistics, correlations and regression analysis. ^ The analysis showed that pediatric occupational therapists working in various practice settings demonstrate favorable attitudes toward family-centered care as measured by the Professional Attitude Scale. There was no correlation between professional characteristics and educational experiences to therapists' attitudes. A moderate correlation (r = .368, p < .05) was found between the occupational therapists attitudes and the organizational culture of their workplaces. A factor analysis was conducted on the organizational culture instrument (FamPRS) as this sample was exclusively pediatric occupational therapists and the original sample was interdisciplinary professionals. Two factors were extracted using a principal components extraction and varimax rotation, in addition to examination of the scree plot. These two factors accounted for 50% of the total variance of the scores on the instrument. Factor 1, called empowerment accounted for 45.6% of the variance, and Factor 2, responsiveness accounted for 4.3% of the variance of the entire instrument. Stepwise regression analysis demonstrated that these two factors accounted for 16% of the variance toward attitudes clinicians hold toward family-centered care. These factors support the tenets of family-centered care; empowering parents to be leaders in their child's health care and helping organizations become more responsive to family needs. ^ These study findings suggest that organizational culture has some influence on occupational therapists attitudes toward family-centered care (R 2 = .16). These findings suggest educators should consider families as valuable resources when considering program planning in family-centered care at preservice and workplace settings. ^

Crossing boundaries to education: Haitian transnational families and the quest to raise the family up

Nearly 175, 000 Haitian immigrants have settled in South Florida since the 1970s. Their lives are often lived transnationally with persistent connections and obligations to family members in Haiti. Yet, traditional theories of immigrant assimilation focus on the integration of immigrants into host countries, giving little consideration to relationships and activities that extend into migrants' countries of origin. Conversely, studies of transnational families do not explicitly address incorporation into the receiving country. This dissertation, through the experiences of Haitian immigrants in South Florida, reveals a transnational quest "to raise the family up" through migration, remittances, and the pursuit of higher levels of education. I argue that familial duties and obligations, which have cultural foundations in the Haitian lakou, structure the activities of Haitian transnational families as they pursue socioeconomic advancement through migration and education. With the support of transnational families, many students cross boundaries to academic achievement and improve their opportunities for socioeconomic mobility in the US. With higher levels of education, these individuals contributed to a more favorable incorporation into the United States for their extended families, as well. The data were collected through participant observation and 78 in-depth interviews documenting the migration histories of 27 Haitian immigrant families in South Florida. This dissertation contributes to the existing literature on Haitian immigrants in the United States and to an understanding of the transnational dimensions of immigrant incorporation more broadly.

The development of an online neonatal intensive care unit family education

Background: British Columbia’s Fraser Health Authority (FHA) neonatal intensive care units (NICUs) value family centered care (FCC). Nevertheless, there is limited evidence that FCC is actually incorporated into practice, as well as some concern that FHA NICU education is inaccessible, inconsistent, or disorganized. Purpose: The mission of this project is to support the principles of FCC throughout the development of an FHA online NICU family education guide by reflecting upon the needs of families throughout their NICU journey. Methods: A needs assessment was initially completed and included literature reviews, consultations, and an environmental scan. This data informed development of an online NICU family education guide which plots current education materials along key stages of the NICU journey: prenatal, admission, early days, growing and developing, discharge and at home. For the purposes of this practicum, only the prenatal stage was fully developed and will serve as a template for other stages following a formative evaluation. A pamphlet and revised FHA Neonatal Checkpoint will also be developed to augment teaching by health care professionals. Implementation and evaluation plans were adapted from the Center for Disease Control Framework for Program Evaluation in Public Health. Results: The needs assessment validates and directs the development, implementation, and evaluation of the online guide illustrating an FCC approach. The online guide centralizes and organizes education by selecting education topics that relate to each stage of the NICU journey. This family-directed design enables families’ access to consistent and reliable information and offers them an opportunity to learn at their own pace. Conclusion: The process of creating, implementing, and evaluating an online family education program for FHA NICUs elucidates the intricacies and the advantages of integrating FCC into NICU practice.

The Relationship Between Support Systems and Disease Burden for Families Coping with Sickle Cell Disease in South Africa and Cameroon

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.

The Impact of a Family Home-learning Program on levels of Parental/Caregiver Efficacy

This study sought to determine if participation in a home education learning program would impact the perceived levels of parental self-efficacy of parents/caregivers who participate in the completion of home-learning assignments and increase their levels of home-learning involvement practices. Also, the study examined the relationship between the parental involvement practice of completing interactive home-learning assignments and the reading comprehension achievement of first grade students. A total of 146 students and their parents/caregivers representing a convenience sample of eight first grade classes participated in the study. Four classes (n=74) were selected as the experimental group and four classes (n=72) served as the control group. . There were 72 girls in the sample and 74 boys and the median age was 6 years 6 months. The study employed a quasi-experimental research design utilizing eight existing first grade classes. It examined the effects of a home-learning support intervention program on the perceived efficacy levels of the participating parents/care¬givers, as measured by the Parent Perceptions of Parent Efficacy Scale (Hoover-Dempsey, Bassler, & Brissie, 1992) administered on a pre/post basis. The amount and type of parent involvement in the completion of home assignments was determined by means of a locally developed instrument, the H.E.L.P. Parent Involvement Home-learning Scale, administered on a pre/post basis. Student achievement in reading comprehension was measured via the reading subtest of the Brigance, CIB-S pre and post. The elementary students and their parents/caregivers participated in an interactive home-learning intervention program for 12 weeks that required parent/caregiver assistance. Results revealed the experimental group of parents/caregivers had a significant increase in their levels of perceived self-efficacy, p<.001, from the pre to post, and also had significantly increased levels of parental involvement in seven home-learning activities, p<.001, than the control group parents/caregivers. The experimental group students demonstrated significantly higher reading levels than the control group students, p<.001. This study provided evidence that interactive home-learning activities improved the levels of parental self-efficacy and parental involvement in home-learning activities, and improved the reading comprehension of the experimental group in comparison to the control.

Weaving Futures. Family Transnationalism in the migration from Dominican Republic and Brazil to Spain

This article explores forms of migrant families’ reorganization within a (new) global economic crisis and the hardening of migration control in Europe; based on the cases of Dominican and Brazilian migration to Spain.Our goal is not to characterize the wholeness of strategies from these collectives, instead visualize its heterogeneity. Displacement of Dominican and Brazilian population to Spain shares the role of women as the first link of migration chains. In both cases women are the economic support of transnational families and they lead reunification's processes. Nevertheless, differences in the time spent in the destination country, migratory status, origin (rural-urban), level of education, class and labor insertion in destination country, affect differently, the planning and start up of migration projects, the organization of care and family reunification strategies. These findings question the predominant place granted to national origin in the study of international migration.

The Family Model - A transgenerational approach to mental health in families: personal, clinical, educational, research, systems and policy perspectives

The Family Model – A transgenerational approach to mental health in families This workshop will provide an overview on The Family Model (TFM) and its use in promoting and facilitating a trans­generational family focus in Mental Health services, over the past 10­ - 15 years. Each of the speakers will address a different perspective, including service user/consumer, clinical practice, education & training, research and policy. Adrian Falkov (chair) will provide an overview of TFM to set the scene and a ‘policy to practice’ perspective, based on use of TFM in Australia. Author: Heide Lloyd. The Family Model ­ A personal (consumer/patient) perspective | United Kingdom Heide will provide a description of her experiences as a child, adult, parent & grandparent, using TFM as the structure around which to ‘weave’ her story and demonstrate how TFM has assisted her in understanding the impact of symptoms on her & family and how she has used it in her management of symptoms and recovery (personal perspective). The Family Model ­ Education & training perspective ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway Authors: ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway This combined (UK & Norwegian) presentation will cover historical background to TFM and its use in eLearning (the Social Care Institute for Excellence)and a number of other UK initiatives, together with a description of the postgraduate masters course at the University Oslo/Akershus, using TFM. The Family Model ­ A research perspective PhD Anne Grant | Northern Ireland Author: PhD Anne Grant | Ireland Anne Grant will describe how she used TFM as the theoretical framework for her PhD looking at family focused (nursing) practice in Ireland. The Family Model ­ A service systems perspective ­ Mary Donaghy | Northern Ireland Authors: PhD Adrian Falkov | Australia ­ Mary Donaghy | N Ireland Mary Donaghy will discuss how TFM has been used to support & facilitate a cross service ‘whole of system’ change program in Belfast (NI) to achieve improved family focused practice. She will demonstrate its utility in achieving a broader approach to service design, delivery and evaluation.

Providing a ‘whole-of-family’ approach to care: family-focused practices in mental health services

Introduction: Family members including children are all impacted by a family member’s mental illness. Although mental health services are increasingly encouraged to engage in family-focused practice, this is not a well-understood concept or practice in mental health care. Methods: An integrative review using systematic methods was conducted with international literature, with the aim of identifying concepts and practices of family-focused practice in child and youth and adult mental health services. Results: Findings from 40 peer-reviewed literature identified a range of understandings and applications of family-focused practice, including who comprises the ‘family’, whether the focus is family of origin or family of procreation or choice, and whether the context of practice is child and youth or adult. ‘Family’ as defined by its members forms the foundation for practice that aims to provide a whole-of-family approach to care. Six core practices comprise a family focus to care: assessment; psychoeducation; family care planning and goal-setting; liaison between families and services; instrumental, emotional and social support; and a coordinated system of care between families and services. Conclusion: By incorporating key principles and the core family-focused practices into their care delivery, clinicians can facilitate a whole-of-family approach to care and strengthen family members’ wellbeing and resilience, and their individual and collective health outcomes.

Genome-wide association study reveals greater polygenic loading for schizophrenia in cases with a family history of illness

Genome-wide association studies (GWAS) of schizophrenia have yielded more than 100 common susceptibility variants, and strongly support a substantial polygenic contribution of a large number of small allelic effects. It has been hypothesized that familial schizophrenia is largely a consequence of inherited rather than environmental factors. We investigated the extent to which familiality of schizophrenia is associated with enrichment for common risk variants detectable in a large GWAS. We analyzed single nucleotide polymorphism (SNP) data for cases reporting a family history of psychotic illness (N = 978), cases reporting no such family history (N = 4,503), and unscreened controls (N = 8,285) from the Psychiatric Genomics Consortium (PGC1) study of schizophrenia. We used a multinomial logistic regression approach with model-fitting to detect allelic effects specific to either family history subgroup. We also considered a polygenic model, in which we tested whether family history positive subjects carried more schizophrenia risk alleles than family history negative subjects, on average. Several individual SNPs attained suggestive but not genome-wide significant association with either family history subgroup. Comparison of genome-wide polygenic risk scores based on GWAS summary statistics indicated a significant enrichment for SNP effects among family history positive compared to family history negative cases (Nagelkerke's R(2 ) = 0.0021; P = 0.00331; P-value threshold <0.4). Estimates of variability in disease liability attributable to the aggregate effect of genome-wide SNPs were significantly greater for family history positive compared to family history negative cases (0.32 and 0.22, respectively; P = 0.031). We found suggestive evidence of allelic effects detectable in large GWAS of schizophrenia that might be specific to particular family history subgroups. However, consideration of a polygenic risk score indicated a significant enrichment among family history positive cases for common allelic effects. Familial illness might, therefore, represent a more heritable form of schizophrenia, as suggested by previous epidemiological studies.

Parente sensitive support by paediatric nurses

Introdução The hospitalization of a child is an experience that causes big changes in child and his family life. The parents often suffer from stress and anxiety. This can affect their relationship with the child. Because of the closeness to the parents, nurses have an important role in giving parents support so they can reduce their stress and have more energy to support and take care of their children and in the inclusion of the family in the process of care Objectivos The aim of this study was to define what family-centered care is, to define the needs of hospitalized children's parents and to identify the strategies and methods that the nurses use to give parental support adapted to the parent's needs. It was also a goal to identify and understand the main differences between parental support given by nurses in Belgium and Portugal. Metodologia The study exists out of two parts. First is an integrative review of literature. The search was performed using the databases MEDLINE, CINAHL , PubMed and Science Direct. 18 Articles were selected based on inclusion and exclusion criteria. They had to involve nurses, hospitalized children between 0 and 18 years and their parents. Second part was a focus group. The participants were pediatric nurses from Portugal and Belgium. The goal was to understand different perspectives related to the parental needs of hospitalized children and nursing interventions to answer that needs. Resultados family-centered care can be considered as a partnership between family and nurses. It has some general principles: information sharing, respect differences, negotiation and care in the context of the family. Parent's participation is important to reduce the parental stress and it is essential for meeting the needs of the children. Parents have different needs: knowledge and communication, support, comfort, proximity and assurance. Parents cope with stress in different ways and nurses can support them while they are in the hospital. It is a nurse task to identify the stressors and know methods of emotional support, so she can protect the family structure. Nurses should always see the family as a path to the child, with whom the nurses should worry about taking care and meeting their needs. This is crucial to ensure the family's well-being, adaption to hospitalization and the child's recovery. Conclusões Nurses should collect information about the family which includes family relationships, cultural and religious habits and familiar dynamic. Parents need interpersonal emotional support. It is important for parents to be close to their children but they also need to take care of themselves. When nurses have enough information they can use it to the identification of parental needs and the planning of nursing interventions. It is important that nurses create an environment where parents feel safe and that they have privacy. To create a therapeutic and professional relationship efficient communication is needed. Parents will experience less stress and anxiety.

Parente sensitive support by paediatric nurses

Introdução The hospitalization of a child is an experience that causes big changes in child and his family life. The parents often suffer from stress and anxiety. This can affect their relationship with the child. Because of the closeness to the parents, nurses have an important role in giving parents support so they can reduce their stress and have more energy to support and take care of their children and in the inclusion of the family in the process of care Objectivos The aim of this study was to define what family-centered care is, to define the needs of hospitalized children's parents and to identify the strategies and methods that the nurses use to give parental support adapted to the parent's needs. It was also a goal to identify and understand the main differences between parental support given by nurses in Belgium and Portugal. Metodologia The study exists out of two parts. First is an integrative review of literature. The search was performed using the databases MEDLINE, CINAHL , PubMed and Science Direct. 18 Articles were selected based on inclusion and exclusion criteria. They had to involve nurses, hospitalized children between 0 and 18 years and their parents. Second part was a focus group. The participants were pediatric nurses from Portugal and Belgium. The goal was to understand different perspectives related to the parental needs of hospitalized children and nursing interventions to answer that needs. Resultados family-centered care can be considered as a partnership between family and nurses. It has some general principles: information sharing, respect differences, negotiation and care in the context of the family. Parent's participation is important to reduce the parental stress and it is essential for meeting the needs of the children. Parents have different needs: knowledge and communication, support, comfort, proximity and assurance. Parents cope with stress in different ways and nurses can support them while they are in the hospital. It is a nurse task to identify the stressors and know methods of emotional support, so she can protect the family structure. Nurses should always see the family as a path to the child, with whom the nurses should worry about taking care and meeting their needs. This is crucial to ensure the family's well-being, adaption to hospitalization and the child's recovery. Conclusões Nurses should collect information about the family which includes family relationships, cultural and religious habits and familiar dynamic. Parents need interpersonal emotional support. It is important for parents to be close to their children but they also need to take care of themselves. When nurses have enough information they can use it to the identification of parental needs and the planning of nursing interventions. It is important that nurses create an environment where parents feel safe and that they have privacy. To create a therapeutic and professional relationship efficient communication is needed. Parents will experience less stress and anxiety.

Nme Gene Family Evolutionary History Reveals Pre-Metazoan Origins and High Conservation between Humans and the Sea Anemone, Nematostella vectensis

Background: The Nme gene family is involved in multiple physiological and pathological processes such as cellular differentiation, development, metastatic dissemination, and cilia functions. Despite the known importance of Nme genes and their use as clinical markers of tumor aggressiveness, the associated cellular mechanisms remain poorly understood. Over the last 20 years, several non-vertebrate model species have been used to investigate Nme functions. However, the evolutionary history of the family remains poorly understood outside the vertebrate lineage. The aim of the study was thus to elucidate the evolutionary history of the Nme gene family in Metazoans. Methodology/Principal Findings: Using a total of 21 eukaryote species including 14 metazoans, the evolutionary history of Nme genes was reconstructed in the metazoan lineage. We demonstrated that the complexity of the Nme gene family, initially thought to be restricted to chordates, was also shared by the metazoan ancestor. We also provide evidence suggesting that the complexity of the family is mainly a eukaryotic innovation, with the exception of Nme8 that is likely to be a choanoflagellate/metazoan innovation. Highly conserved gene structure, genomic linkage, and protein domains were identified among metazoans, some features being also conserved in eukaryotes. When considering the entire Nme family, the starlet sea anemone is the studied metazoan species exhibiting the most conserved gene and protein sequence features with humans. In addition, we were able to show that most of the proteins known to interact with human NME proteins were also found in starlet sea anemone. Conclusion/Significance: Together, our observations further support the association of Nme genes with key cellular functions that have been conserved throughout metazoan evolution. Future investigations of evolutionarily conserved Nme gene functions using the starlet sea anemone could shed new light on a wide variety of key developmental and cellular processes.

CAREGIVING FOR A FAMILY MEMBER WITH HEAD AND NECK CANCER

Objective: To know the perception of informal caregivers regarding the care for a family member with head and neck cancer. Methods: Qualitative study conducted between March and May 2014 in the radiotherapy outpatient center of the Centro de Alta Complexidade em Oncologia – CACON (Oncology High Complexity Center) of the Hospital Universitário de Brasília – HUB (University Hospital of Brasília) using semi-structured interviews with nine caregivers about the experience of caring for family members. Data underwent Content Analysis and four units of meaning were identified: “Representation of cancer in the Family”, “The care as debt, individual reward or reconstruction of family ties”, “Repercussions of cancer on the caregiver’s personal life” and “Social support and network used by caregivers”. Results: Feelings of sadness and surprise at the moment of diagnosis were attributed to cancer, as well as the idea of punishment. The care was seen as personal satisfaction, accomplishment and opportunity for family rapprochement. Work overload and change in routine were altered functions. Religiosity, exchange of experience in the waiting room and institutional support appeared as coping strategies. Conclusion: The experience of caring for family members with head and neck cancer directly interferes in the lives of caregivers. Pointing out the institutional embracement as a strategy within the social network reinforces the importance of integrating the caregivers as a significant part of the health care plan developed by the health team.

PERCEPTIONS AND EXPERIENCES OF FAMILY CAREGIVERS OF BEDRIDDEN ELDERLY

Objective: To know the perceptions and experiences of family caregivers of bedridden elderly. Methods: A qualitative descriptive exploratory study conducted in January 2015 with four caregivers in a Family Health Center in the municipality of Araripe, CE. Data were collected through semi-structured interviews and the information was organized using the content analysis technique. A total of three categories emerged from the analysis of the reports of caregivers: the dependence process of the elderly; daily difficulties experienced by the caregiver; and satisfaction with the home care service. Results: The dependence process of the elderly took place as a consequence of pathological processes such as neoplasm, cerebrovascular accident and dementia. However, it could also be observed that physiological phenomena – common in old age – can also make individuals dependent on caregivers. As to the difficulties faced by the caregivers, they reported the need for greater involvement by the family, given that the centralization of work generates an overload and hence affects the care of the elderly. Teamwork in the home care context is fundamental, given that it allows a complementary and comprehensive care to the ledrely/caregiver binomial. Conclusion: Healthy aging is a major challenge to be overcome given that the development of a healthy lifestyle is difficult in all social strata. It is necessary to improve home care in order to provide support to caregivers so that the quality of life of bedridden elderly and caregivers is improved.

A Multidimensional Approach to Social Support: the Questionnaire on the Frequency of and Satisfaction with Social Support (QFSSS)

The Questionnaire on the Frequency of and Satisfaction with Social Support (QFSSS) was designed to assess the frequency of and the degree of satisfaction with perceived social support received from different sources in relation to three types of support: emotional, informational, and instrumental. This study tested the reliability of the questionnaire scores and its criterion and structural validity. The data were drawn from survey interviews of 2042 Spanish people. The results show high internal consistency (values of Cronbach's alpha ranged from .763 to .952). The correlational analysis showed significant positive associations between QFSSS scores and measures of subjective well-being and perceived social support, as well as significant negative associations with measures of loneliness (values of Pearson's r correlation ranged from .11 to .97). Confirmatory factor analysis using structural equation modelling verified an internal 4-factor structure that corresponds to the sources of support analysed: partner, family, friends, and community (values ranged from .93 to .95 for the Goodness of Fit Index (GFI); from .95 to .98 for the Comparative Fit Index (CFI); and from .10 to .07 for the Root Mean Square Error of Approximation (RMSEA)). These results confirm the validity of the QFSSS as a versatile tool which is suitable for the multidimensional assessment of social support.