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Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

WONG CHONG, Ruud
WILLEMEN, Agnes M
VOORMAN, Jeanine
KETELAAR. Marjolijn
BECHER, Jules
VERHEIJDEN, Johannes
SCHUENGEL, Carlo
April 2019

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Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.

 

Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.

 

Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.

 

Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.

Parental satisfaction with inclusion in physical education

WILHELMSEN, Terese
SØRENSEN, M. S
SEIPPEL, Ø
BLOCK, M. E
2019

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Knowledge is scarce on parental satisfaction with the inclusion of children with disabilities in physical education (PE). This study explored how parents’ satisfaction with inclusion in PE was associated with parental and child interpersonal and intrapersonal characteristics. Seventy-two parents of children with disabilities participated in the survey-based study. The results of the ordinary least square regression (OLS) and quantile regression (QR) indicated that the parents’ satisfaction with social inclusion in PE was associated with their attitudes towards inclusion in PE, perceived PE-related information sharing, and the type of disability and degree of physical inclusion. Parents’ satisfaction with pedagogical inclusion of children in PE was associated with their attitudes towards inclusion in PE, PE-related information sharing, and the children’s degrees of disability and physical inclusion. Furthermore, the QR estimates indicated that the explanatory strength of parental attitudes towards inclusion in PE varied with the degree of parental satisfaction with social and pedagogical inclusion of their children in PE. Practical and methodological implications of the findings are discussed.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Employees with hearing impairment. A qualitative study exploring managers’ experiences

VIGRESTAD SVINNDAL, Elisabeth
JENSEN, Chris
BY RISE, Marit
January 2019

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Purpose: Explore managers’ experiences regarding employees with hearing impairments.

 

Materials and methods: Individual interviews with ten managers having employees with hearing impairment. The interviews were analyzed using Systematic text condensation.

 

Results: The managers felt great responsibility for their employees’ functioning, but hearing loss issues were easily forgotten. They found access to information as imperative to secure workplace adjustments, and temporary needs, rather than permanent ones, were easily met. Despite their challenging nature, meetings were not accommodated to meet hearing loss needs. Support in accommodation processes at the workplace was not requested since minor adjustments were perceived as sufficient.

 

Conclusion: The results show that there are barriers towards developing less strenuous working conditions for employees with hearing impairments. The implications of hearing loss should be recognized as risk factors for fatigue and treated accordingly. Appropriate services are necessary to support the stakeholders at the workplace and utilize the room for manoeuver in the accommodation process. Further studies should identify how such services can accommodate both the employees, and managers’ needs.

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape

MLENZANA, Nondwe B.
EIDE, Arne H.
FRANTZ, Jose M.
2018

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Background: Understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management.

 

Objectives: The aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the Western Cape, South Africa, and to inform clinical practice and policy in this emerging field.

 

Method: This study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. Interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). Thematic content analysis was conducted with the transcripts.

 

Results: Four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery.

 

Conclusion: Based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention.

Everyday life in older men living alone – a complex view needing a biopsychosocial perspective

VON HEIDENKEN WAGERT, Petra
NYGARD, Susanne
CEDERBOM, Sara
June 2018

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Purpose: To explore how older men living alone, describe their everyday activities and their abilities as well as how they could be helped in everyday life.

 

Materials and methods: Qualitative semi-structured interviews were analysed with inductive content analysis. Eight men aged 65+ years were included. They were all living alone, albeit with home help services. They were able to walk and had sufficient cognitive ability.

 

Results: The analysis resulted in one theme “A driving force of managing activities and overcome hindering factors requires a broad spectrum of prerequisites for participating in everyday life” with the following four categories: Importance of everyday activities; individual prerequisites enabling everyday activities; body and mind inhibit, and react to the decreased, abilities; and importance of the environment.

 

Conclusions: The results generate a complex view of older men’s everyday life. It is important for older men’s independence that health care and rehabilitation staff adopt a comprehensive view and work from a biopsychosocial (BPS) perspective.

‘I felt pain. Deep pain…’: Experiences of primary caregivers of stroke survivors with aphasia in a South African township

MASUKU, Khetsiwe P.
MOPHOSHO, Munyane
TSHABALALA, Muziwakhe
2018

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Background: Aphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences.


Purpose: The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg.


Method: Qualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis.


Results: Findings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia.


Conclusions: Contextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families.

Communication rehabilitation in sub-Saharan Africa: The role of speech and language therapists

WYLIE, Karen
MCALLISTER, Lindy
DAVIDSON, Bronwyn
MARSHALL, Julie
2018

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Background: Workforce factors present a significant barrier to the development of rehabilitation services for people with communication disabilities in sub-Saharan Africa (SSA). Exploring how the work of speech and language therapists (SLTs) in the region is organised and delivered can provide insight into existing services, areas for future workforce development and improved rehabilitation access for people with communication disability.


Objectives: This paper describes the employment and service provision patterns and work roles of a sample of SLTs in SSA.


Method: A broad, purpose-designed, mixed-methods survey was designed to collect data from SLTs living in Anglophone countries of SSA. Descriptive statistics and qualitative content analysis were undertaken. This paper reports on a subset of data from the wider survey.


Results: A description of the employment and work roles of the 33 respondents to the survey and characteristics of their service users is presented. SLTs were commonly employed within private and not-for-profit sectors and frequently worked in temporary jobs. SLTs engaged in a range of work roles, including capacity building and training others. Services were provided by SLTs across age ranges, health conditions and settings, with paediatric, urban services commonly reported. Costs for service users and urban-centred services give indications of barriers to service access.


Conclusion: Knowledge of the way in which speech and language therapy services are organised and provided has the potential to shape the development of communication disability rehabilitation in SSA. This research has identified a range of issues requiring consideration as the profession develops and grows.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Community stakeholders’ perspectives on the role of occupational therapy in primary healthcare: Implications for practice

NAIDOO, Deshini
Van WYK, Jacqueline
JOUBER, Robin
2017

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Background: Primary healthcare (PHC) is central to increased access and transformation in South African healthcare. There is limited literature about services required by occupational therapists in PHC. Despite policy being in place, the implementation of services at grassroots level does not always occur adequately.

 

Objectives: This study aimed at gaining an understanding of the challenges of being disabled and the services required by occupational therapists (OTs) in rural communities in order to better inform the occupational therapy (OT) training curriculum. 

 

Method: An exploratory, descriptive qualitative design was implemented using purposive sampling to recruit 23 community healthcare workers from the uGu district. Snowball sampling was used to recruit 37 members of the uGu community, which included people with disability (PWD) and caregivers of PWDs. Audio-recorded focus groups and semi-structured interviews were used to collect data, which were thematically analysed. Ethical approval was obtained from the Biomedical and Research Ethics Committee of the University of KwaZulu-Natal (BE248/14).


Results: Two main themes emerged namely: firstly, the challenges faced by the disabled community and secondly appropriate opportunities for intervention in PHC. A snapshot of the social and physical inaccessibility challenges experienced by the community was created. Challenges included physical and sexual abuse, discrimination and marginalisation. Community-based rehabilitation and ideas for health promotion and prevention were identified as possible strategies for OT intervention.
Conclusion: The understanding of the intervention required by OT in PHC was enhanced through obtaining the views of various stakeholders’ on the role. This study highlighted the gaps in community-based services that OTs should offer in this context.
 

Disability inclusion in higher education in Uganda: Status and strategies

EMONG, Paul
ERON, Lawrence
2016

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Background: Uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. Both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the Convention on the Rights of Persons with Disabilities (CRPD) on education. The CRPD, in Article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education.


Objectives: Despite Uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. The main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from Emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors.


Results: The results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services.

 

Conclusion: The article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between Disabled Peoples Organisations (DPO’s) strengthened to ensure disability inclusion and the establishment of disability support centres.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa

GRUT, Lisbet
MJI, Gubela
BRAATHEN, Stine H
INGSTAD, Benedicte
2012

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Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognized and utilized.

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