Responses to the needs of families with children with disabilities in Spain: The voices of families and professionals.

Children with disabilities and their families have the right to access Early Childhood Intervention (ECI). Family members should act as active agents of the intervention. In this sense, service professionals should offer support and intervention to improve family well-being and child development. We analyzed the experiences of parents of children with disabilities users of ECI services and the professional coordinators in the Balearic Islands (Spain) from a phenomenological-hermeneutic approach. Data collection was through semi-structured interviews and focus groups. A total of 5 coordinators and 30 family members participated in the study. The results indicate five categories: making ECI visible, reception phase, family well-being, intervention, and current barriers. The findings project the need to make ECI visible in policies and administrations, as well as plans to raise social awareness of child disability. Protocols must be found to facilitate access to services for children and families. Implications for the improvement of ECI are proposed.

The processes and outcomes related to 'family-centred care' in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review.

OBJECTIVE: The aim of this study is to identify the main processes and outcomes related to family-centred care (FCC) in neuromotor and functional rehabilitation of preschool children with cerebral palsy (CP). BACKGROUND: FCC is considered a reference for best practices in child rehabilitation. CP is the most common cause of physical disability in childhood with repercussions on functionality. There is a gap in knowledge of the practical principles of FCC, and it is necessary to develop a reference model for the practice of child rehabilitation professionals. METHODS: In this scoping review, the main databases selected were as follows: LILACS; Pubmed; Embase; The Cochrane Library; CINAHL (EBSCO); Scopus; Web of Science; PEDro (Physiotherapy Evidence Database); Open Gray and other banks of thesis. The terms combined in the search strategy were as follows: 'Family-centered', 'Family-centred' and 'CP'. Inclusion criteria are as follows: studies on preschool-aged children with CP, undergoing family-centred functional therapeutic interventions (FCFTI) with outcomes on bodily structures and functions and/or activities and/or participation. RESULTS: The main participatory care methods identified were home intervention, environmental enrichment, collaborative realistic goal setting, planning of home-based activities and routine, child assessment feedback, family education/training, family coaching, encouraging discussion, observation of therapist and supervised practice. The main relational care qualities identified were as follows: respect, active listening, treat parents as equals, clear language, respect parents' ability to collaborate, demonstrate genuine care for the family, appreciate parents' knowledge and skills, demonstrate competence, experience and commitment. The main outcomes identified in children were improvement in motor and cognitive function and the child's functional ability. The main parentaloutcomes identified were empowerment, feeling of competence, self-confidence, motivation and engagement. CONCLUSION: The main differences in FCFTI programs refer to the parental education/guidance component and the amount of intervention carried out by parents. It is possible that the elements chosen by the therapist in a FCFTI depend on characteristics of the child and caregivers.

'Canaries in the mine'. Parents of adult children with schizophrenia: An integrative review of the literature.

The purpose of this integrative review was to evaluate the current state of knowledge of parents who have adult children diagnosed with schizophrenia and their relationship with mental health professionals. Findings indicated that parents (primarily mothers) believed they intuitively knew when their adult children were becoming unwell and that they doggedly pursued connections with mental health care providers. Five themes were evident in the literature: trusting your instincts, feeling dismissed and devalued, making connections and making concessions, living with distress and sorrow, and becoming your own health-care provider. The implications of the findings on mental health nursing practice indicate that professional family relationships were not ideal, and that parents wanted to improve these relationships. Parents wanted health-care professionals to respond to their requests for help for both their children and for themselves, and wanted to be able to help the mental health team to help their adult children.

Experiences of donor families after consenting to organ donation: a qualitative study.

AIM: The aim of this study was to investigate the experience of Norwegian donor families during organ donation after brain death. METHODS: This was a qualitative study using personal interviews. Twenty donor-family members from thirteen different situations were interviewed about their experience of being a close relative in an organ donation situation. The principles of qualitative content analysis were used. FINDINGS: An experience of strain caused by the organ donation situation was identified. Lack of comprehension and awareness of the process of organ donation contributed to this, and continuing information after the consent was given appeared to be necessary. Reconciliation with the decision of organ donation and the subsequent situation was gained through understanding the organ donation process, through recognition of the increased strain and through satisfaction resulting from the contribution made by organ donation. Healthcare personnel were key persons in contributing to such understanding and recognition. CONCLUSION: When attending to families in an organ donation situation, the focus must be on ensuring comprehension of the situation both through information provided in the hospital and during follow-up. It seems essential to arrange for a period of parting that can contribute to reconciliation, and to offer follow-up according to individual needs.

Validation study of the malay version of the work-family conflict questionnaire.

BACKGROUND: Work-family conflict has received increasing attention in recent decades in the area of workplace stressors, which can affect employees' health. However, the dimensionality of the work-family conflict construct among the Malay-speaking population has not been clarified. In order to do so, it is crucial to use an instrument that is appropriate and valid for the Malay-speaking population. As such, the goal of this study was to validate and test the dimensionality of the Malay version of the Work-Family Conflict Questionnaire. METHODS: The present study conducted exploratory factor analysis, confirmatory factor analysis, discriminant validity, convergent validity, and internal consistency, using Cronbach's alpha, of the work-family conflict construct among 332 working women in Malaysia. RESULTS: The results supported the existence of four dimensions in the Work-Family Conflict Questionnaire that distinguish between time based and strain-based work-family conflict and family-work conflict. The discriminant validity, convergent validity, and internal consistency of this construct are adequately supported. CONCLUSION: The findings of this study supported the existence of discriminant and convergent validity, as well as adequate reliability, for the construct. Thus, the Work-Family Conflict Questionnaire is a valid and reliable instrument among Malay-speaking working women.

Validation Study of the Malay Version of the Work-Family Conflict Questionnaire

Background: Work-family conflict has received increasing attention in recent decades in the area of workplace stressors, which can affect employees’ health. However, the dimensionality of the work–family conflict construct among the Malay-speaking population has not been clarified. In order to do so, it is crucial to use an instrument that is appropriate and valid for the Malay-speaking population. As such, the goal of this study was to validate and test the dimensionality of the Malay version of the Work-Family Conflict Questionnaire. Methods: The present study conducted exploratory factor analysis, confirmatory factor analysis, discriminant validity, convergent validity, and internal consistency, using Cronbach’s alpha, of the work–family conflict construct among 332 working women in Malaysia. Results: The results supported the existence of four dimensions in the Work-Family Conflict Questionnaire that distinguish between time based and strain-based work-family conflict and family-work conflict. The discriminant validity, convergent validity, and internal consistency of this construct are adequately supported. Conclusion: The findings of this study supported the existence of discriminant and convergent validity, as well as adequate reliability, for the construct. Thus, the Work–Family Conflict Questionnaire is a valid and reliable instrument among Malay-speaking working women.

Encontro musical: estratégia de cuidado de enfermagem em quimioterapia para discutir adoecimento/morte / Music session in chemotherapy: nursing care strategy for discussing illness/ death / Encuentro musical: estrategia de atención de enfermería en quimioterapia para discutir adolecer/muerte

Estudo descritivo realizado com clientes e familiares durante o encontro musical, estratégia de cuidado na quimioterapia para a comunicação dos participantes e a expressão dos sentimentos sobre adoecimento e morte. Objetivou se analisar as concepções de clientes em tratamento quimioterápico e familiares participantes dos encontros musicais sobre a morte e os recursos utilizados para o seu enfrentamento. Foi aplicada pesquisa convergente-assistencial, sendo obtidos dados através de entrevistas individuais e grupos de convergência num total de oito encontros semanais com 27 sujeitos. Pesquisa realizada no Hospital Central do Exército, na cidade do Rio de Janeiro, em 2009. Os resultados apontam que os encontros facilitaram a expressão de crenças e sentimentos acerca do processo vida/morte, contribuindo para o enfrentamento da ansiedade na quimioterapia. O cuidado em oncologia deve abarcar a criação de espaços de compartilhamento que incluam atividades criativas como recurso para o enfrentamento da perspectiva de morte.

Descriptive research developed at the Central Army Hospital, in Rio de Janeiro, RJ, Brazil, 2009, with family and clients undergoing chemotherapy. The music session is a care strategy to encourage communication and expression feelings regarding illness and death. Its primary objective was to analyze participants’ perceptions of death as well as their resources for coping with it. Data was obtained with Assistential-Convergent Research, through individual interviews and convergence groups with 27 subjects for 8 weekly meetings. Results show meetings facilitated the expression of beliefs and feelings aboutlife / death, and contributed with mechanisms for coping with anxiety about chemotherapy. Oncology care should include the opening up of space for sharing creative activities for coping with death.

Estudio llevado a cabo con clientes y familiares durante el encuentro musical, estrategia de cuidado en la quimioterapia, para la comunicación de los participantes y la expresión de los sentimientos sobre adolecer y muerte. Se objetivó analizar las percepciones de clientes en tratamiento de quimioterapia y de familiares participantes acerca de lamuerte y los recursos utilizados para su confrontación. Metodología: Investigación Convergente Asistencial, datos obtenidos a través de entrevistas individuales y grupos de convergencia en un total de 8 reuniones semanales con 27 sujetos. La investigación se realizó en el Hospital Central del Ejército, en la ciudad de Río de Janeiro-Brasil, en 2009. Los resultados indican que las reuniones facilitaron la expresión de las creencias y sentimientos sobre el proceso vida / muerte, lo que contribuye para enfrentar la ansiedad en la quimioterapia. La atención en oncología debe incluir la creación de espacios que incluyen compartir actividades creativas como un recurso para la confrontación de perspectiva de la muerte.