An examination of clinicians’ experiences of collaborative culturally competent service delivery to immigrant families raising a child with a physical disability

Abstract

Purpose: Although collaborative, culturally competent care has been shown to increase positive health outcomes and client satisfaction with services, little is known about the ways that clinicians implement service delivery models with immigrant families having a child with a disability. The purpose of this study is to examine the experiences of clinicians working with immigrant families raising a child with a physical disability and to examine the views and experiences of clinicians providing collaborative, culturally competent care to immigrant families raising a child with a physical disability. Method: This study draws on in-depth interviews with 43 clinicians within two pediatric centers in Toronto and Quebec. Results: Our findings show that clinicians remove or create barriers for immigrant families in different ways, which affect their ability to provide culturally competent care for immigrant families raising a child with a physical disability. Conclusions: Our findings suggest that there is a need for more institutional support for collaborative, culturally competent care to immigrant families raising a child with a physical disability. There is a lack of formal processes in place to develop collaborative treatment plans and approaches that would benefit immigrant families.

• Implications for Rehabilitation

• Clinicians need greater institutional support and resources to spend more time with families and to provide more rehabilitative care in families’ homes.

• Building rapport with families includes listening to and respecting families’ views and experiences.

• Facilitate collaboration and culturally competent care by having team meetings with parents to formulate treatment plans.

     

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.

Implications for Rehabilitation

• Pediatric rehabilitation providers working with immigrant families raising a child with a disability should engage in training and education around culturally sensitive care to better meet the needs of these clients.

• More time is needed when working with immigrant families to build trust and rapport.

• Clinicians need to be sensitive around gender issues and try to involve both parents in the decision making around the care for their child.

• Healthcare providers should help clients to become more aware of the resources available to them in the hospital and in the community.

     

A collaborative approach to supporting communication in the assessment of decision-making capacity

Purpose: This paper explores the clinical implications of acquired communication disorders in decisional capacity. Discipline-specific contributions are discussed in a multidisciplinary context, with a specific focus on the role of speech and language pathologists (SLPs). Method: Key rehabilitation issues in determining decisional capacity are identified. The impact of communication impairment on capacity is discussed in light of the research literature relating to supportive communication and collaborative practice that respects human rights. Results: Guidelines are presented for professionals involved in the assessment of the decisional capacity of individuals with communication disorders of neurological origin. They guide an assessor through: assessing cognition, language and speech; determining preferred communication domains; and practical strategies and considerations for maximising communication. Conclusion: There is a dearth of guidelines available that deal with augmenting and supporting communication of individuals with acquired communication disorders of neurological origin when it comes to assessing legal decision-making capacity. Capacity assessment is a multidisciplinary realm, and the involvement of SLPs is key to maximising the decision-making capacity of these individuals.

• Implications for rehabilitation

• All clinicians have an obligation to maximise client autonomy and participation in decision-making.

• Assessments of capacity should involve a general cognitive ability assessment, followed by a decision-specific assessment tool or question set for the decision facing the patient.

• The involvement of speech and language pathologists (SLPs) is key to assess and facilitate capacity determinations in instances of cognitive-communication disorder.

• Impairments in different aspects of auditory comprehension require different accommodations.

     

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended.

• Implications for Rehabilitation

• Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life.

• A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks.

• Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion.

• A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

     

Parental perceptions of barriers to physical activity in children with developmental disabilities living in Trinidad and Tobago

Abstract

Background: Parents have a strong influence on their child’s engagement in physical activities, especially for children with developmental disabilities, as these children are less likely to initiate physical activity. Knowledge is limited regarding parents’ perceptions of this phenomenon in low- and middle-income countries (LMICs); yet many rehabilitation providers work with children with developmental disabilities and their parents in these contexts. Purpose: The aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children’s engagement in physical activity. Methods: An occupational perspective was used to explore how parents speak about barriers to their child’s engagement in physical activity. Interviews were conducted with nine parents in Port-of-Spain, Trinidad and Tobago. Findings: Parent’s perceived barriers were categorized into four themes: family priorities, not an option in our environment, need to match the activity to the child’s ability, and need for specialized supports. Conclusions: Findings provide opportunities for future rehabilitation and community programming in LMICs.

• Implications for Rehabilitation

• Children living with a developmental disability may engage more in solitary and sedentary pursuits as a result of parents choosing activities that do not present extensive social and physical demands for their child.

• Therapists can play an important role in providing knowledge to parents of appropriate physical activity and the benefits of physical activity for children with developmental disabilities in order to promote children’s participation.

• In environments where there is limited social support for families, therapists need to consider and be particularly supportive of parental priorities and schedules.

     

Client and family engagement in rehabilitation research: a framework for health care organizations

Purpose: To describe the development and implementation of an organizational framework for client and family-centered research.

Method: Case report.

Results: While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada.

Conclusion: It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs.

• Implications for rehabilitation

• Family engagement in rehabilitation research

• ?Rehabilitation research is crucial to the development and improvement of rehabilitative care.

• ?The relevance, appropriateness, and accountability of research to patients, clients and families could be improved.

• ?Engaging clients and families as partners in all aspects of the research process is one way to address this problem.

• ?In this paper, we describe a framework for engaging clients and families in research at the organizational level.

     

Applications of the International Classification of Functioning,Disability and Health in goal-setting practices in healthcare

Abstract

Purpose: While evidence exists to support the adoption of collaborative goal-setting in healthcare, some clinicians feel that it is not feasible. This article proposes that the development of a standardized collaborative goal-setting approach using the framework and classification system of the International Classification of Functioning, Disability and Health (ICF) could address these feasibility issues. It is the objective of this article to understand the extent to which the ICF has been integrated into current goal-setting literature in order to assess its potential use in a standardized collaborative goal-setting approach. Methods: A scoping review of the literature published in English since 2001 was conducted in EMBASE, Medline and CINAHL. Articles were included in this review if they integrated the ICF into goal-setting practices in any healthcare discipline. Results: Nineteen articles were included in this review. Analysis of these articles revealed that the ICF has been integrated into goal-setting practices. The benefits associated with this integration suggest that integrating the ICF into goal-setting practices can standardize collaborative goal-setting. Conclusion: Evidence from this scoping review supports the use of the ICF in healthcare goal-setting practices because it provides clinicians and patients with specific steps to follow when attempting to set goals collaboratively.

• Implications for Rehabilitation

• Collaborative goal-setting.

• Collaborative goal-setting involves patients working with their clinicians to develop health outcome goals together and is a fundamental component of patient-centered care.

• Some rehabilitation disciplines have yet to fully embrace collaborative goal-setting due to feasibility issues.

• This article proposes that the integration of the International Classification of Functioning, Disability and Health (ICF) into goal-setting practices could standardize collaborative goal-setting in a way that would address these feasibility issues.

     

Services for children with developmental co-ordination disorder: an evaluation against best practice principles

Purpose: The National Health Service in Scotland published a best practice framework to support occupational therapists and physiotherapists to deliver effective services for children with developmental co-ordination disorder (DCD); however, adherence is variable. To highlight areas for development, this study compared the care pathway within a paediatric DCD service against the NHS Scotland framework. Methods: A partnership of researchers and clinicians based in the United Kingdom conducted a qualitative study with 37 participants (N?=?13 interview participants, N?=?24 workshop participants). In-depth interviews and/or workshops were used to map the DCD service against the NHS framework. Identified gaps were aligned with four key stages of the care pathway. Qualitative analysis software was used to analyse the data. Results: Core principles to guide future development were identified for each phase of the pathway. These core principles related to the NHS framework and focused on issues such as involving the family, defining clear pathways and enhancing children’s participation. Participants identified potential strategies for service improvement such as developing community-based interventions and information provision. Conclusion: Challenges when providing services for children with DCD include confusing service pathways and poor partnership working. It is, therefore, important that clinicians utilise collaborative working strategies that support children’s participation.

• Implications for Rehabilitation

• There are numerous challenges related to the implementation of best practice principles into the provision of therapy services for children with developmental coordination disorder (DCD).

• It is important that AHPs seek ways of engaging parents and educational professionals at all stages of the care pathway in order to ensure optimum service provision for the child.

• Addressing participation is an important aspect and community-based strategies may be particularly beneficial, both as a preventative activity and as an intervention approach.

     

Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract

Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice.

• Implications for Rehabilitation

• Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs.

• Engagement strategies need to be better reported and evaluated in the literature.

• Engagement facilitate uptake of research findings by increasing stakeholders’ awareness of the evidence, the resources available and their own ability to act upon a situation.

• Factors influencing opportunities for stakeholder engagement need to be better understood.

     

The development of a framework for high-quality,sustainable and accessible rural private therapy under the Australian National Disability Insurance Scheme

Purpose: The Australian National Disability Insurance Scheme (NDIS) will provide people with individual funding with which to purchase services such as therapy from private providers. This study developed a framework to support rural private therapists to meet the anticipated increase in demand.

Method: The study consisted of three stages utilizing focus groups, interviews and an online expert panel. Participants included private therapists delivering services in rural New South Wales (n?=?28), disability service users (n?=?9) and key representatives from a range of relevant consumer and service organizations (n?=?16). We conducted a thematic analysis of focus groups and interview data and developed a draft framework which was subsequently refined based on feedback from stakeholders.

Results: The framework highlights the need for a ‘rural-proofed’ policy context in which service users, therapists and communities engage collaboratively in a therapy pathway. This collaborative engagement is supported by enablers, including networks, resources and processes which are influenced by the drivers of time, cost, opportunity and motivation.

Conclusions: The framework identifies factors that will facilitate delivery of high-quality, sustainable, individualized private therapy services for people with a disability in rural Australia under the NDIS and emphasizes the need to reconceptualize the nature of private therapy service delivery.

• Implications for Rehabilitation

• Rural private therapists need upskilling to work with individuals with disability who have individual funding such as that provided by the Australian National Disability Insurance Scheme.

• Therapists working in rural communities need to consider alternative ways of delivering therapy to individuals with disability beyond the traditional one-on-one therapy models.

• Rural private therapists need support to work collaboratively with individuals with disability and the local community.

• Rural private therapists should harness locally available and broader networks, resources and processes to meet the needs and goals of individuals with disability.

     

Coping strategies used by Pakistani parents living in the United Kingdom and caring for a severely disabled child

Purpose: This study explores the coping strategies of Pakistani parents living in the UK and caring for children with severe learning disabilities. It examines factors that influenced participants’ choice or ability to use the different strategies identified. Method: Qualitative design using in-depth interviews. Results: Coping strategies included sharing care with others, using external support and recognizing and enjoying the rewards of caregiving. Parents used different strategies according to their appraisal of resources available and the perceived consequences of their action within their social milieu. Conclusions: Findings relating to cultural difference fit with a universalist approach. Coping strategies are not specific to the Pakistani population but certain characteristics of the strategies may be distinct to those used by parents with a different heritage. Antonovsky’s work suggests that maintaining a sense of coherence makes a key difference to staying psychologically healthy in an apparently disordered world. Findings from this study fit with this theory. Parents derived meaning and a sense of purpose from the idea that their child’s disability was from God. The rewards of caregiving and the strong moral imperative to care for one’s own child contributed to understandings of caregiving as an activity worthy of investment.

Implications for Rehabilitation

• Coping strategies identified are not specific to the Pakistani population but certain features of the strategies may be distinct to those used by parents with a different heritage.

• Individual practical and material circumstances and availability of resources influenced the choice of coping strategies.

• Religion played a role in the coping experiences of all participants.

• Health professionals should be equipped and supported to use religion appropriately to promote successful coping

     

Communication and collaboration among return-to-work stakeholders

Abstract

Purpose: Workers who are injured or become ill on the job are best able to return-to-work when stakeholders involved in their case collaborate and communicate. This study examined health care providers’ and case managers’ engagement in rehabilitation and return-to-work following workplace injury or illness.

Method: In-depth interviews were conducted with 97 health care providers and 34 case managers in four Canadian provinces about their experiences facilitating rehabilitation and return-to-work, and interacting with system stakeholders.

Results: A qualitative thematic content analysis demonstrated two key findings. Firstly, stakeholders were challenged to collaborate as a result of: barriers to interdisciplinary and cross-professional communication; philosophical differences about the timing and appropriateness of return-to-work; and confusion among health care providers about the workers' compensation system. Secondly, these challenges adversely affected the co-ordination of patient care, and consequentially, injured workers often became information conduits, and effective and timely treatment and return-to-work was sometimes negatively impacted.

Conclusions: Communication challenges between health care providers and case managers may negatively impact patient care and alienate treating health care providers. Discussion about role clarification, the appropriateness of early return-to-work, how paperwork shapes health care providers’ role expectations, and strengthened inter-professional communication are considered.

• Implications for Rehabilitation

• Administrative and conceptual barriers in workers’ compensation systems challenge collaboration and communication between health care providers and case managers.

• Injured workers may become conduits of incorrect information, resulting in adversarial relationships, overturned health care providers’ recommendations, and their disengagement from rehabilitation and return-to-work.

• Stakeholders should clarify the role of health care providers during rehabilitation and return-to-work and the appropriateness of early return-to-work to mitigate recurring challenges.

• Communication procedures between health care specialists may disrupt these challenges, increasing the likelihood of timely and effective rehabilitation and return-to-work.

     

A basic technology-aided programme for leisure and communication of persons with advanced amyotrophic lateral sclerosis: performance and social rating

Purpose: This study assessed (a) the impact of a technology-aided programme on the leisure and communication engagement of persons with advanced amyotrophic lateral sclerosis (ALS) and (b) the opinion of rehabilitation and care personnel regarding the programme. Method: The programme’s impact was assessed with four participants who were allowed to activate leisure and communication options through basic responses (e.g. knee, finger or lip movements) and microswitches. Forty-two care and health professionals rated the programme after watching video clips of persons with ALS (three of the four involved in this study and three involved in previous studies) during and outside of the programme. Results: The programme was effective with all participants. Their mean percentages of session time with independently initiated leisure and communication engagements were zero during baseline and increased to between nearly 70 and 80 during the intervention. The care and health professionals rated the technology-aided programme as beneficial for the participants’ positive engagement and social image, fairly practical for daily contexts and interesting from a personal standpoint. Conclusions: The programme might be viewed as a viable resource for persons with advanced ALS.

• Implications for Rehabilitation

• A programme characterised by versatility, simplicity and relatively low cost could be considered practically relevant for persons with ALS and their contexts.

• A programme that is effective in fostering participants’ independent leisure and communication engagement and is positively rated by care and rehabilitation personnel is more likely to be accepted and used with consistency.

• Any programme directed at persons affected by ALS needs to be adapted to the persons’ progressive deterioration, starting from the response and microswitch used for accessing the programme’s options.

     

Strategies to promote family–professional collaboration: two case reports

Purpose: Although research supports family–professional collaboration, challenges to implementation have been reported. The case reports describe the implementation of a 4-step practice model that incorporates specific strategies to facilitate family–professional collaboration.

Method: The participants were two mothers of children with physical disabilities and two physical therapists. Therapists received instruction in the strategies for collaboration including client-centred interview, visualising a preferred future, scaling questions, and family routine and activity matrix. The intervention was implemented during 6-weekly sessions. The 2nd and 5th sessions were videotaped to analyse the interactions between the parent and therapist using Response Class Matrix. Telephone interviews were conducted to explore participants’ experiences.

Results: Therapists were able to implement all strategies following 6 h of instruction. Analysis of the videotapes indicated that mother–therapist interactions were characterised by sharing information and open communication in a mutually supportive manner. Interviews with the mothers and therapists indicated that the therapists engaged the mothers in the intervention process and tailored interventions to child and family needs. The scaling questions were difficult to implement (therapists) and answer (parents).

Conclusion: The findings suggest that the strategies can be used by therapists to promote collaboration and involve parents in setting goals and the intervention process.

• Implications for Rehabilitation

• Strategies to promote parent–therapist collaboration include client-centred interview, visualising a preferred future, scaling questions, and family routine and activity matrix.

• Therapists with no previous instruction or training on family-centred services successfully implemented the strategies following 6 h of instruction.

• Interactions between two parent–physical therapist dyads were characterised by sharing information and open communication in a mutually supportive manner following therapist instruction in strategies for parent–therapist collaboration.

     

Development of a measure to assess effective listening and interactive communication skills in the delivery of children’s rehabilitation services

Purpose: Therapists’ listening and communication skills are fundamental to the delivery of children’s rehabilitation services but few measures comprehensively assess these skills. The 24-item Effective Listening and Interactive Communication Scale (ELICS) was developed to reflect a multifaceted conceptualization based on evidence in the literature. Method: Data from 41 pediatric rehabilitation therapists (occupational, physical, speech-language, recreation, and behavioural therapists; psychologists and social workers) were used to determine the factor structure, internal consistency, and construct validity of the subscales. Results: The measure contains four subscales with very good to excellent reliability: Consensus-oriented, Exploratory, Receptive, and Action-oriented Listening. Content validity was ensured by the development process. Conclusions: The ELICS portrays listening as a purposeful, goal-oriented, and relational activity. The measure allows clinicians to assess and reflect on their listening/communication skills, and can be used to evaluate professional development activities and interventions geared to improving these skills.

Implications for Rehabilitation

• Therapists’ listening and effective communication skills are essential to the successful delivery of children’s rehabilitation services, but few measures comprehensively assess these skills.

• Clinical encounters in pediatric rehabilitation involve various types of listening/communication skills: receptive listening, exploratory listening, consensus-oriented listening, and action-oriented listening.

• The ELICS is a valid and context-appropriate tool for the self-assessment of listening and communication skills in the context of pediatric rehabilitation practice.

• The ELICS allows clinicians (e.g., occupational, physical, and speech-language therapists) to assess and reflect on their listening/communication skills and may enhance the relationship-based practice of clinicians who provide therapy services to children with disabilities and their families.

     

Occupational therapists’ perceptions about the clinical utility of the 3D interior design software

Purpose: The 3D interior design software (3DIDS) is a technology, which primarily allows users to simulate their homes and visualize any changes prior to implementing them. This feasibility study aimed to examine occupational therapists’ perceptions about the clinical utility of the 3DIDS. A secondary aim was to explore the attitudes of occupational therapists towards technology in general. Method: Three focus groups were conducted with 25 occupational therapists working with older people in the UK. The qualitative data were analysed using inductive thematic analysis. Results: The three main themes that were identified were usage and attitudes of technology, opportunities for realistic application of the 3DIDS and related threats and benefits for the occupational therapy profession. Occupational therapists had a positive attitude towards technology. They suggested that the 3DIDS could be used in discharge planning and in rehabilitation. They viewed it as a tool that could enhance their status within the health care profession and improve communication, but not as a tool that should replace the role of the occupational therapist. Conclusions: This research offers new and important findings about the utilization of the 3DIDS by occupational therapists and provides information as to where this technology should be trialled.

Implications for Rehabilitation

• Gaining occupational therapists’ perceptions of the 3D interior design software (3DIDS) gives valuable information as to the clinical utility of the software.

• The 3DIDS was perceived as a tool that could be used as enhancing the rehabilitation process as well as a facilitating tool in discharge planning.

• The 3DIDS was viewed as a tool that could enhance clinical practice and communication among various agencies, but it was suggested that it should be used with caution to avoid confusion and replacement of important services.

     

Towards a consumer-informed research agenda for aphasia: preliminary work

Abstract

Purpose: Person-centeredness in clinical practice incorporates the values of clients into a shared decision-making approach. The values of person-centeredness can be extended into the realm of research when the views of consumers towards relevant and important research topics are sought. Work in other health domains has shown the importance of gathering consumer views on health care research, which ultimately extends into health care policy and practice. The purpose of this paper is to report methods used successfully to gather the views of individuals living with aphasia on research topics they view as important. Methods: The project is founded on principles of community-based participatory research. Using a modified nominal group technique, members of an aphasia support group generated a list of research topics. Results: The Aphasia Support Group identified twenty-two potential research questions. Although a majority (59%) of the research questions generated by persons with aphasia could be addressed with accumulated scientific evidence, the remainder of the generated questions has not been addressed in the research literature. Conclusions: This project demonstrates that consumers with aphasia can participate as stakeholders in the discussion of research needs in aphasia. Additional work is needed to fully develop a consumer-informed research agenda for aphasia.

• Implications for Rehabilitation

• The perspectives of individuals with post-stroke aphasia on research needs can be successfully collected using nominal group techniques.

• Consumer input to research agendas and priorities can help to address potential research biases.

• Clinicians and researchers can use these techniques and other communication supports to foster collaborative, patient-centered care in their practice and work.