Working with immigrant families raising a child with a disability: challenges and recommendations for healthcare and community service providers

Purpose: Although providing culturally sensitive care is an important element of family-centered rehabilitation very is little known about providers' experiences working with immigrant families in pediatric settings. The purpose of this study is to develop a better understanding of the experiences of service providers working with immigrant families raising a child with a physical disability. Method: We draw on a qualitative approach involving in-depth interviews and focus groups with healthcare and community service providers (n?=?13) in two multi-cultural Canadian cities. Results: The findings indicate that healthcare and community service providers encounter several challenges in providing care to immigrant families raising a child with a disability. Such challenges include the following: (1) lack of training in providing culturally sensitive care; (2) language and communication issues; (3) discrepancies in conceptualizations of disability between healthcare providers and immigrant parents; (4) building rapport; and (5) helping parents to advocate for themselves and their children. Service providers also have several recommendations for improving services to better meet the needs of immigrant families. Conclusion: Clinicians should be cognizant of how culture influences the care they provide to clients. More training opportunities are needed for enhancing culturally sensitive care. [Box: see text].     

The intersection of disability and healthcare disparities: a conceptual framework

Abstract

Purpose: This article provides a conceptual framework for understanding healthcare disparities experienced by individuals with disabilities. While health disparities are the result of factors deeply rooted in culture, life style, socioeconomic status, and accessibility of resources, healthcare disparities are a subset of health disparities that reflect differences in access to and quality of healthcare and can be viewed as the inability of the healthcare system to adequately address the needs of specific population groups. Methods: This article uses a narrative method to identify and critique the main conceptual frameworks that have been used in analyzing disparities in healthcare access and quality, and evaluating those frameworks in the context of healthcare for individuals with disabilities. Specific models that are examined include the Aday and Anderson Model, the Grossman Utility Model, the Institute of Medicine (IOM)’s models of Access to Healthcare Services and Healthcare Disparities, and the Cultural Competency model. Results: While existing frameworks advance understandings of disparities in healthcare access and quality, they fall short when applied to individuals with disabilities. Specific deficits include a lack of attention to cultural and contextual factors (Aday and Andersen framework), unrealistic assumptions regarding equal access to resources (Grossman’s utility model), lack of recognition or inclusion of concepts of structural accessibility (IOM model of Healthcare Disparities) and exclusive emphasis on supply side of the healthcare equation to improve healthcare disparities (Cultural Competency model). In response to identified gaps in the literature and short-comings of current conceptualizations, an integrated model of disability and healthcare disparities is put forth. Conclusion: We analyzed models of access to care and disparities in healthcare to be able to have an integrated and cohesive conceptual framework that could potentially address issues related to access to healthcare among individuals with disabilities. The Model of Healthcare Disparities and Disability (MHDD) provides a framework for conceptualizing how healthcare disparities impact disability and specifically, how a mismatch between personal and environmental factors may result in reduced healthcare access and quality, which in turn may lead to reduced functioning, activity and participation among individuals with impairments and chronic health conditions. Researchers, health providers, policy makers and community advocate groups who are engaged in devising interventions aimed at reducing healthcare disparities would benefit from the discussions.

• Implications for Rehabilitation

• Evaluates the main models of healthcare disparity and disability to create an integrated framework.

• Provides a comprehensive conceptual model of healthcare disparity that specifically targets issues related to individuals with disabilities.

• Conceptualizes how personal and environmental factors interact to produce disparities in access to healthcare and healthcare quality.

• Recognizes and targets modifiable factors to reduce disparities between and within individuals with disabilities.

     

Factors that affect GP referral of a child with intellectual disability for a mild illness: A discrete choice experiment

Background

General practitioners (GP) report multiple challenges when treating individuals with intellectual disabilities which may influence referral rates. The study aimed to establish factors that influence GP's decision-making when referring a child with intellectual disabilities to the emergency department.

Method

Discrete choice experiments (DCEs) are increasingly used in health research to further understand complex decision making. A DCE was designed to assess the relative importance of factors that may influence a GP's (N = 157) decision to refer.

Results

A random parameters model indicated that perceived limited parental capacity to manage an illness was the most important factor in the decision to refer a child to the ED, followed by a repeat visit, a referral request from the parent, and a Friday afternoon appointment.

Conclusion

Understanding the factors that influence referral is important for service improvement and to strengthen primary care provision for this population and their families.     

The roles of effective communication and client engagement in delivering culturally sensitive care to immigrant parents of children with disabilities

Abstract

Purpose: Delivering pediatric rehabilitation services to immigrant parents of children with disabilities requires the practice of culturally sensitive care. Few studies have examined the specific nature of culturally sensitive care in pediatric rehabilitation, especially the notions of effective communication and client engagement. Method: Interviews were held with 42 therapists (10 social workers, 16 occupational therapists and 16 speech language pathologists) from two locations in Canada (Toronto and Quebec City). Data were analyzed using an inductive content analysis approach. Results: Study themes included the importance and nature of effective communication and client engagement in service delivery involving immigrant parents. Participants discussed using four main types of strategies to engage immigrant parents, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures. Conclusions: The findings illuminate the importance of effective, two-way communication in providing the mutual understanding needed by therapists to engage parents in the intervention process. The findings also richly describe the engagement strategies used by therapists. Clinical implications include recommendations for strategies for therapists to employ to engage this group of parents. Furthermore, the findings are applicable to service provision in general, as engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

• Implications for Rehabilitation

• Effective communication permeates the delivery of culturally sensitive care and provides mutual understanding, which is fundamental to client engagement.

• The findings illuminate the nature of “partnership” by indicating the role of collaborative therapist strategies in facilitating engagement.

• Four main strategies facilitate effective communication and client engagement, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures.

• Engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

     

A holistic intervention programme for families with a child with a disability

BACKGROUND: The birth of a child with a disability may cause serious stress for the parents and affect each member of the family. Parents need support to deal with such a situation; however, health care professionals themselves are not always well equipped to help them and often adopt an attitude of withdrawal. AIM: The aim of this paper is to describe a family intervention programme developed in collaboration with families who were adapting to the birth of a child with a disability. DISCUSSION: The primary purpose of the programme is to help family members adapt to the situation in which they suddenly find themselves, primarily by reducing stress. The family's autonomy and competencies in providing care for the child are promoted and called into action. The programme encompasses different aspects of family relations: the individual, marital, parental, family, extended family and non-family sub-systems. Its theoretical foundations, clinical experience with families of a child with a health problem, and our previous research have enabled a remodelled vision of the way individuals and families adapt to such a situation. CONCLUSION: The symbioses of the design of the programme, training in its application, and intervention itself have transformed families of a child with a disability as well as the nurses themselves. The key element of this transformation has been the mutual recognition of relevant skills and authority by families and health care professionals that has led to new competencies, self-determination and an individuality that may change their lives.     

Supporting 'expert' parents--professional support and families caring for a child with complex health care needs in the community

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents' and professionals' experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional 'support' that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles.     

Meanings of being a supervisor for care providers suffering from burnout: from initial signs to recuperation

Aim  To illuminate meanings of being a supervisor for care providers suffering from burnout: from initial signs to recuperation.
Background  Supervisors in health care, i.e. supervisors with first-line responsibilities for a work unit, are exposed to heavy demands, especially in times of downsizing and restructuring of the healthcare system. When care providers show signs of developing burnout, these demands are even greater.
Methods  Interviews with 12 supervisors in health care were interpreted using a phenomenological-hermeneutic method.
Results  Being a supervisor when someone in the work team shows signs of burnout means struggling to help them to continue working. In this predicament and being responsible for the unit, the supervisors are torn between focusing on relations and on production. When the care provider reports sick, they are left with feelings of hopelessness and self-blame.
Conclusions and implications for nursing management  Supervisors face almost unmanageable strain, caught between conflicting demands. It seems important that supervisors are offered opportunities to share their feelings about this predicament as well as gaining increased knowledge about burnout. This is important if the supervisors are to give proper support, but it will also help to turn supervisory failure into development and to protect the health of the supervisors.     

A Heideggerian analysis of good care in an acute hospital setting: Insights from healthcare workers,patients and families

This study articulates the relational constituents of good care beyond techno-rational competence. Neoliberal healthcare means that notions of care are readily commodified and reduced to quantifiable assessments and checklists. This novel research investigated accounts of good care provided by nursing, medical, allied and auxiliary staff. The Heideggerian phenomenological study was undertaken in acute medical-surgical wards, investigating the contextual, communicative nature of care. The study involved interviews with 17 participants: 3 previous patients, 3 family members and 11 staff. Data were analysed iteratively, dwelling with stories and writing and rewriting to surface the phenomenality of good care. The data set highlighted the following essential constituents: authentic care: caring encompassing solicitude (fürsorge); impromptu care: caring beyond role category; sustained care: caring beyond specialist parameters; attuned care: caring encompassing family and culture; and insightful care: caring beyond assessment and diagnosis. The findings are clinically significant because they indicate the importance of nurse leaders and educators harnessing the potential capacity of all healthcare workers to participate in good care. Healthcare workers reported that participating in or witnessing good care was uplifting and added meaning to their work, contributing to a sense of shared humanity.     

Exploring multi-agency working in services to disabled children with complex healthcare needs and their families

Children with complex healthcare needs typically require technical and/or medical equipment in the home. This growing group of children and families need support that crosses agency and professional boundaries, necessitating effective multi-agency working. There are many examples of multi-agency working around the United Kingdom (UK), some specifically designed to meet the needs of children with complex healthcare needs and their families. Recent legislation and policy statements have highlighted the importance of joint planning and working. Currently no research exists that examines the impact of these initiatives on disabled children with complex healthcare needs and their families. The "Working Together" project is an ongoing research study based at the Norah Fry Research Centre, University of Bristol, Bristol, UK. The project aims to explore the impact of multi-agency work on children with complex healthcare needs and their families. This paper examines the literature on barriers to disabled children and the need for multi-agency working. It also considers the concept of multi-agency working and how different approaches to working together might be perceived by children and families.