Empower Families Research Articles

AIRP onlus partecipa al 1° Summit Europeo dedicato ai pazienti affetti da ADPKD

On Saturday the16th March 2019, AIRP participated at the 1st European ADPKD Patient Summit – a unique event designed to promote patient-centred care by providing an interactive forum for patients and experts to discuss ADPKD care, research and advocacy. Forty patient representatives from 15 countries, including Italy, Belgium, Finland, Denmark, France, Germany, Ireland, Lithuania, Netherlands, Spain, Sweden, Switzerland, Turkey, UK and USA joined the ADPKD experts and spokespersons from the European Kidney Health Alliance and EURORDIS. The Summit was co-hosted by PKD International, a global network of patient organizations created to fight all forms of polycystic kidney disease (PKD), and the European ADPKD Forum (EAF), a multidisciplinary, international faculty of experts dedicated to improving the health and quality of life of people with ADPKD. The event aimed to help, inform and empower patients and families to: • be fully involved in the management of their own health and talk about ADPKD with their healthcare team and participate in making decisions about their care • make the best use of the services available • learn about ADPKD research and boost ADPKD advocacy. The programme was designed and delivered together by patients and EAF experts from across Europe, based on the ADPKD Patient Route Map launched in 2018 (available at www.pkdinternational.org) and the EAF Multidisciplinary Position Statement on ADPKD Care (free online here at the Nephrology, Dialysis and Transplantation journal). During the first plenary session of the day, Prof. Albert Ong, Prof. Djalila Mekahli and David Baron (PKD Foundation) updated the participants on some of the latest international developments in ADPKD research, namely the Polycystic Kidney Disease Outcomes Consortium (PKDOC), ADPKD paediatric registries and the Standardised Outcomes in Nephrology – Polycystic Kidney Disease (SONG-PKD) study. Flavia Galletti (AIRP Italy) then moderated a session on the important steps that patients and caregivers can take, together with their healthcare team, to help protect their kidneys and reduce the risk of cardiovascular disease (including heart attacks and stroke). Prof. Tevfik Ecder discussed current recommendations on smoking cessation and managing high blood pressure, together with salt restriction and coffee intake. According to Prof. Ecder, these measures will become even more vital as obesity and diabetes, which also increase the risk of cardiovascular diseases, become more common. In addition, Prof. Mekahli explained how these aspects apply to children with ADPKD. Other sessions, led jointly by patient representatives and experts from across Europe, focused on predicting the progress of ADPKD, treating liver cysts and pain, genetics and genetic testing, renal replacement therapy (i.e. dialysis and transplantation) and how patients can better understand and get involved in research. There were also plenary sessions on current research and patient advocacy in ADPKD, and on the perspective of industry. Videos and slides from this very successful Summit will soon be available on the PKD International website. In addition, each breakout group resulted in a series of aspirations and priorities for ADPKD care and research in the future. These will be soon developed into a Summit ‘Manifesto’.

Parent Education and Training for autism spectrum disorders: Scoping the evidence.

Empowering families of children with autism spectrum disorder through education and training is best practice. A wide range of Parent Education and Training programmes are delivered around the globe, but there is limited knowledge about the characteristics of these programmes, or about the research methods and outcomes used to evaluate them, particularly in countries outside the United States. We, therefore, performed a scoping review of all peer-reviewed Parent Education and Training publications outside the United States. A search was conducted between March and May 2017. Four reviewers extracted data and performed a mixed-methods quality appraisal of publications. Thirty-seven publications representing 32 unique programmes were identified. Publications described a highly diverse range of Parent Education and Training programmes across 20 countries and all continents except South America. The majority were group-based, but varied significantly in goals, modalities and duration. The majority of studies (86.4%) reported positive outcomes in relation to the core study objectives and only two studies reported some negative findings. Quality appraisal rated only 27% of studies to have met all the methodological quality criteria. Implementation factors such as manualisation, fidelity and cost were commented on infrequently. In spite of the clear need for Parent Education and Training programmes, our findings show that the research evidence-base in autism spectrum disorder outside the United States is relatively small, non-representative and in need of methodological quality improvements.

Advocacy care on HIV disclosure to children.

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families' experiences with HIV disclosure to children under 13years old. Eight family members who have disclosed HIV to seropositive children were interviewed in-depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members' discourse highlighted two ways of knowing their own condition and disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self-care with autonomy.

"Imagine a clinical world without family systems thinking": Comment.

Comments on an editorial by C. T. Fogarty and L. B. Mauksch (see record 2017-56601-001). The editorial discussed collaborative family health care and the importance of family and social context to yield a comprehensive understanding of health. Jacobs agrees that family systemic thinking is an extremely helpful tool for clinicians, even if there's limited data to prove that. But he also thinks that systemic thinking in and of itself doesn't flatten the health care hierarchy and empower family members. (PsycINFO Database Record

Eadvice While You Wait – Empowering Families, Improving Health, Reducing Waiting Times

Eadvice While You Wait – Empowering Families, Improving Health, Reducing Waiting Times

Housing and Health as partners in a place-based hub

Introduction : RedLink is an interagency hub in a suburb of inner Sydney. We will describe the collaborative partnership between NSW Housing and Sydney Local Health District, and non-governmental organisations. Short description of practice change implemented : Traditionally poor communication and working in silos can act as a barrier to good care for individuals and families, especially those with complex needs. The initiative has been running since July 2015 and during this period RedLink has developed a collaborative and flexible model of service delivery that has evolved in line with clients’ own identified goals with the aim to achieve long term change. Aim and theory of change : Long term relationships are built with the community through a range of community activities and engagement strategies to improve community wellbeing. The model aims to provide a service to residents and their extended families, respect the culture of the community, and empower families to find their own solutions that work for them. Targeted population and stakeholders : Clients using the service have complex needs, including psychological trauma, mental health, substance abuse, chronic health problems, child protection and parenting issues. Service providers within Health, Housing and other NGOs are encouraged to deliver services through non-standard methods of intervention at the local level. Highlights : At RedLink, there are no wrong doors. Services collaborating in the RedLink space exercise flexibility to ensure that clients do not “fall between the cracks”. With no one service automatically assuming leadership of cases, RedLink use a unique triage system and model of service delivery. Service delivery may change over time depending on clients’ relationships with the service or changing goals. This approach has enabled the Redfern community to work alongside services, government and business to achieve long term sustainable change. Community ownership is at the centre of everything that we do, including the sustainability and governance of RedLink. Comments on sustainability : The success of this initiative has created ongoing momentum and motivation for collaborating partners to continue to deliver non-standard methods of intervention in a place-based hub. Transferability : The model at RedLink was established in conjunction with the local residents. It could be transferred to other areas and is currently being explored in another suburb in inner west Sydney. Conclusions : By allowing client control of the direction and pace of service delivery, trust is established between the community and service providers. Building trust with vulnerable community members is essential, and this has had an impact on the wider community. Extended family members are no self-referring to services, addressing the wider health and social needs of families and the community. Discussion : Building relationships and trust with vulnerable groups to address social determinants of health is crucial to encourage engagement in traditional health systems, and to address wider health needs of families and the community. Lessons learned : The need for collaborative interagency practice in partnership with the community is essential if the needs of vulnerable community members are to be addressed.

Family-Initiated Pediatric Rapid Response: Characteristics, Impetus, and Outcomes.

Family-initiated rapid response (FIRR) empowers families to express concern and seek care from specialized response teams. We studied FIRRs that occurred in a pediatric tertiary hospital over a 3-year period. The main aims were to describe the characteristics and outcomes of FIRRs and compare them with clinician-activated RRs (C-RRs). Of the 1,906 RRs events reviewed, 49 (2.6%) were FIRRs. All FIRRs had appropriate clinical triggers with the most common being uncontrolled pain. Chronic conditions and previous admissions were present in 61%. More than half of FIRRs had a vital sign change that should have qualified C-RR activation. Seventy-six percent FIRRs needed at least one or more interventions. Twenty-seven percent of FIRRs needed transfer to intensive care unit compared with 60% transfer rate for C-RRs. Family-initiated rapid response events were activated for legitimate concerns and frequently needed clinical interventions. Enhanced information and awareness of FIRR can improve utilization of the system and enhance family satisfaction, patient safety, and outcomes. Disseminating the information on FIRR and the importance of family involvement will improve the care of children and empower family members.

How are the principles of integration currently taught to Scottish medical students? Sharing ideas and building connections in undergraduate education

An introduction: (comprising background and problem statement) In April 2016, legislation came into force in Scotland implementing Health and Social Care integration. This project looks at teaching and promoting integrated care to medical students who will be involved in its future delivery. Description of policy context and objective: To explore how integration is currently taught to medical students with an aim to highlight and share innovation, and explore relevant incorporation into the undergraduate curriculum. Targeted population: This project looks at the medical undergraduate population in Scotland. Highlights: (innovation, Impact and outcomes) Staff involved in curriculum design from all five Scottish Medical Schools were interviewed, exploring healthcare system structure, health and social care integration, person-centred care and inter-professional teaching. Overall they demonstrated, to differing extents, these principles with specific teaching on professionalism, teamwork, communication, self-reflection etc. One university has introduced managing uncertainty at an early stage, another has introduced a module which focuses on the operation of a ward. Medical students work closely with nurses and allied health professionals (as well as families), giving insight into the healthcare system and holistic care. Some had strong inter-professional teaching with one university using clinical scenario/simulation teaching and group reflection with good feedback. Positive role-modelling of community facing specialities, joint teaching from doctors and other healthcare professionals, clinical skills taught by nurses etc. is displaying professional behaviour required for working within integrated services. These projects have received positive feedback from students, staff and patients involved. It has also encouraged use of new technology to encourage engagement of students. Comments on transferability: Each university’s curriculum is different and changes recommended need to be general to allow appropriate and relevant adaptation. A focus on the themes of integration – including empowering patients, families and communities; social determinants, managing risk, health inequalities, complexity, multi-morbidity – rather than detailed teaching on specifics of the Scottish healthcare system will make the teaching more relevant and transferrable to international students, those who move after graduation etc. Conclusions: (comprising key findings, discussion and lessons learned) There is already a lot of teaching on integration principles. There is understandable caution regarding adding material to an already full curriculum but the importance of integration is acknowledged with a willingness to explore this. One of the strongest themes was that the specifics of individual healthcare systems might not be relevant to all medical students. What is valued though, is creating doctors of the future who have a wide range of skills to adapt to an evolving healthcare landscape with a knowledge of the principles of integration. These findings are being fed back to the Deans of the Scottish universities to share ideas and to develop teaching further – creating links and continuity across medical schools. From this project there is now discussion developing with third sector organisations and the government to explore and develop ideas. Further learning/research: - Integration teaching in postgraduate medical education? - Integration teaching for nursing/allied health professional undergraduates? - Could these be connected?

Supporting the developmental health of refugee children and youth.

The Canadian Government has announced that over 50,000 refugees from the Middle East will be resettled in Canada by 2018. More than one-third of these refugees are expected to be children. The Canadian Paediatric Society has called for the Canadian government to prepare for the influx of these children. This should include addressing developmental, behavioural, and mental health needs. The focus of this paper is the role of paediatricians and family physicians in caring for the developmental health of refugee children, as a means of supporting their developmental and learning potential. The authors suggest the use of EMPOWER (Education, Migration, Parents and Family, Outlook, Words, Experience of Trauma and Resources), a mnemonic checklist they developed for assessing developmental risk factors in refugee children. EMPOWER can be used along with online web resources such as Caring For Kids New to Canada in providing evidence-informed care to these children.

Effectiveness of Practical Integrative Module in Empowering Family Empowering Family of Children with Cerebral Palsy

Effectiveness of Practical Integrative Module in Empowering Family Empowering Family of Children with Cerebral Palsy

Paid parental leave and other supports for parents with young children: The United States in international comparison

AbstractThe United States is at a crossroads in its policies for families and women. Currently, the United States provides basic support for children, fathers, and mothers in the form of unpaid parental leave, child‐related tax breaks, and limited public child care. In contrast, the other member states of the Organisation for Economic Co‐operation and Development (OECD) empower families through paid parental leave and comprehensive investments in infants and children. The potential gains from strengthening these policies in the United States are enormous. Paid parental leave and subsidized child‐care help to get and keep more women in the workforce, contribute to economic growth, offer cognitive and health benefits to children, and give parents options in defining their preferred work‐life strategy. Indeed, the United States has been falling behind the rest of the OECD in many social and economic indicators by not adequately investing in children, fathers and mothers. Given the significant payoffs to these family supports, this article focuses on issues of reconciling work and care commitments for families with young children, and, in particular, on paid parental leave policies within the OECD and the United States.

Family Initiated Pediatric Rapid Response: Improve Patient Safety by Empowering Families to Express Concern and Seek Care

Family Initiated Pediatric Rapid Response: Improve Patient Safety by Empowering Families to Express Concern and Seek Care

The strengths of families in supporting mentally-ill family members.

BackgroundAlthough families caring for a mentally-ill family member may experience challenges, some of these families may display strengths that help them to overcome difficulties and grow even stronger in caring for their family member. In cases where these families are unable to cope, the mentally-ill family member tends to relapse. This indicated the need to explore the strengths of families that cope with caring for mentally-ill family members.ObjectiveThe purpose of this study was to explore and describe the strengths of families in supporting mentally-ill family members in Potchefstroom in the North-West Province.MethodA qualitative, explorative, descriptive and contextual design was employed, with purposive sampling and unstructured individual interviews with nine participants. Tesch's eight steps of thematic content analysis were used.ResultsTwelve themes emerged from the data. This involved strengths such as obtaining treatment, utilising external resources, faith, social support, supervision, calming techniques, keeping the mentally-ill family member busy, protecting the mentally-ill family member from negative outside influences, creative communication, praise and acceptance.ConclusionFamilies utilise external strengths as well as internal strengths in supporting their mentally-ill family member. Recommendations for nursing practice, nursing education and for further research could be formulated. Psychiatric nurses should acknowledge families’ strengths and, together with families, build on these strengths, as well as empower families further through psycho-education and support.

The Unexpected Journey Shared by Families: Using Literature to Support and Understand Families Raising a Child with Disabilities

In today’s global society, it is important for future teacher educators to identify and apply different types of dispositions, attitudes, and skills in order to provide full participation and support to all types of families. Partnerships with families having a child with a disability calls for teacher educators of the general and special education professions to collaborate and to provide a meaningful, engaging environment for children with and without disabilities. As a result, teacher educators must be committed to teaching all children and supporting all families with equal respect, care, and dignity, regardless of the child’s ability level. This article addresses how using literature can be a teaching strategy for understanding and supporting families with children with disabilities. The article summarizes future teacher educators’ attitudes and perceptions of working with families with children with disabilities after reading a book written by a parent raising a child with a disability. By investigating specific disabilities and reflecting about the personal story each family shares through literature selections, teacher educators may develop and nurture the dispositions to teach with passion, appreciate individual differences, and empower families raising children with disabilities to reach their full potential.

Avaliação de um programa de acompanhamento de lactentes sob a óptica da família

OBJETIVO: avaliar um programa de acompanhamento do desenvolvimento infantil na atenção básica em saúde, desenvolvido pela área da Fonoaudiologia, sob a ótica da família. MÉTODO: utilizou-se pesquisa qualitativa, por meio do grupo focal, com realização de dois encontros e participação de oito sujeitos. Todos os participantes convidados para o grupo haviam comparecido, pelo menos, a duas avaliações no programa em questão. A coleta de dados teve a participação de moderador, relatora e observadora. Os dados foram analisados, unindo-se as categorias mais relevantes e frequentes no discurso dos participantes. A discussão se concentrou nos aspectos: acolhimento, promoção de saúde, empoderamento, equipe de saúde, trabalho interdisciplinar, integralidade e vínculo. RESULTADOS: os participantes do programa reconheceram que o Fonoaudiólogo atua na prevenção e promoção de saúde e desenvolve ações de esclarecimento de dúvidas dos cuidadores, empoderando os familiares sobre aspectos do desenvolvimento infantil, estabelecendo o vínculo e a integralidade da atuação. CONCLUSÃO: foi possível avaliar a qualidade do modelo de gestão em saúde vigente, propondo a continuidade deste programa, porém com início durante a gestação, com retornos mais frequentes, enfatizando a importância do trabalho interdisciplinar.

Breathe With Ease: An Interdisciplinary Approach to Empower Families to Take Control

In collaboration with an interprofessional team, inclusive of patients, families, nurses, doctors, respiratory therapists and other health care providers, a comprehensive and evidenced-based approach in the management and treatment of asthma was implemented. This concept targeted two identified inpatient, acute care pediatric units whereby patients with a diagnosis of asthma were admitted.

The Perceived Impact of Strengths-Based Family Worker Training: Workers’ Learning that Helped Empower Families

This qualitative study explored what family workers trained in strengths-based family support learned that helped empower families. Fifteen workers and 25 family members participated. Data analysis uncovered three major skills workers employed that family members perceived as helpful: attending, processing, and meaning-making. Workers reported they learned from working with families, family-worker training, informal support networks, and pivotal disorienting life experiences. Study findings suggest the possibility of three developmental stages in worker learning: (a) socialization or learning to implement strengths-based practice, (b) internalization or resolving dissonance about limited abilities to mediate barriers to family empowerment, and (c) identification or recognizing tacit assumptions and the cultural context of empowerment. This article concludes with recommendations for workers, agency leaders, educators, and future research.

Support and Empower Families of Children With Disabilities

Support and Empower Families of Children With Disabilities

Client feedback in child welfare programs: Current trends and future directions

There are relatively few published studies in the field of child welfare in which client feedback data are reported. Thus, there is a general dearth of information about how those most closely involved with and affected by the child welfare system view their experience in it. This review paper has three goals. The first is to highlight the major methodological problems in studying client feedback, including obtaining a non-biased sample and maintaining confidentiality, collecting data by impartial staff, identifying core constructs, and utilizing reliable and valid measures. The second goal is to explicate the rationale for collecting client feedback data despite these challenges. It is proposed that such data can be a critical component of the child welfare service delivery process and has at least three distinct benefits: service delivery improvement, knowledge building, and empowerment. And, finally, the paper aims to identify critical directions for future research in this area, including continued work in developing reliable and valid measures for collecting client feedback data, codification of standardized systems for administering measures, and utilization of such measures to improve services, build knowledge, and empower families and children served by the child welfare system.

P4-168: Consultation liaison service in nursing home I: Empowering family members

P4-168: Consultation liaison service in nursing home I: Empowering family members