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Book part
Publication date: 7 February 2024

Valerie A. Yeager, Jyotsna Gutta, Lisa Kutschera and Sarah M. Stelzner

This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other…

Abstract

This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other caregivers in navigating child and family needs) in a case conferencing model for children with complex medical/social needs. Case conferences are used to address fragmented care, shared decision-making, and set patient-centered goals. Seventeen semi-structured interviews were conducted with clinicians and parent liaisons to assess the involvement of parent liaisons in case conferencing. Two main themes included benefits of parent liaison involvement (10 subthemes) and challenges to parent liaison involvement (5 subthemes). Clinicians reported that liaison participation and support of patients reduced stress for clinicians as well as family members. Challenges to liaison involvement included clinical team/parent liaison communication delays, which were further exacerbated by the COVID-19 pandemic. Parent liaison involvement in case conferences is perceived to be beneficial to children with complex needs, their families, and the clinical team. Integration of liaisons ensures the familial perspective is included in clinical goal setting.

Details

Research and Theory to Foster Change in the Face of Grand Health Care Challenges
Type: Book
ISBN: 978-1-83797-655-3

Keywords

Book part
Publication date: 13 October 2014

Jennifer S. Reinke and Catherine A. Solheim

Using Andersen’s (1968) behavioral model of health services use as a guiding conceptual framework, this study examined how receipt of family-centered care relates to the perceived…

Abstract

Purpose

Using Andersen’s (1968) behavioral model of health services use as a guiding conceptual framework, this study examined how receipt of family-centered care relates to the perceived family challenges for families of children with autism spectrum disorder (ASD).

Design

Data from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were analyzed for 812 parents of children with ASD.

Findings

Multiple regression analyses provided substantive statistical evidence that a child’s race, the adequacy of a family’s insurance, and the stability of child’s health care needs significantly contributed to predicting his or her receipt of family-centered care. Further results suggested a relationship between receipt of family-centered care and the perception of challenge for these families; families receiving family-centered care perceive fewer challenges and feel less unmet need for child health services.

Value

Family-centered professionals provide critical voices in the development of policies and programs geared toward improving the health outcomes of children with ASD and their families.

Details

Family Relationships and Familial Responses to Health Issues
Type: Book
ISBN: 978-1-78441-015-5

Keywords

Book part
Publication date: 27 December 2013

Lynda L. Anderson, Sheryl A. Larson and Shauna McDonald

This study examined access to and quality of supports for families of adolescents with disabilities.

Abstract

Purpose

This study examined access to and quality of supports for families of adolescents with disabilities.

Methodology

An online survey was completed by family members of transition-aged young adults who had participated in parent training sessions on topics related to transitions to adulthood. Survey responses came from all 50 states, the District of Columbia, and 4 U.S. territories.

Findings

More than one-third of families reported unmet information needs related to areas such as employment, housing, preparing for adult relationships, and preparing others to support the family members with disabilities. Families of younger transition-aged youth, youth with Autism Spectrum Disorder or other disabilities, and families with lower household incomes reported more unmet needs. The overall quality of services families reported receiving was 2.19 on a 4-point scale of 1 to 4. Parents reported needing more information and quality of supports related to the transition of youth from school to adulthood.

Practical implications

Given the scope of unmet needs, ongoing collaboration between schools, agencies, organizations, and other entities that serve families is critical. While schools play a key role in supporting the transition process, other organizations also have a role.

Social implications

The results from this survey demonstrate that the need for support is not limited to youth with disabilities, but that family members also have information and support needs related to their roles as caregivers in the transition process.

Originality

This survey provides information about unmet needs and current services from a national sample that includes often underserved populations and includes sufficient numbers of respondents to allow comparisons between families, based on the type of disability their family member had.

Details

Disability and Intersecting Statuses
Type: Book
ISBN: 978-1-78350-157-1

Keywords

Open Access
Article
Publication date: 4 August 2021

Henna M. Leino, Leila Hurmerinta and Birgitta Sandberg

Secondary customers often experience secondary vulnerabilities that manifest in family-centred transformative services as other- and self-related customer needs. Yet, a relational…

1918

Abstract

Purpose

Secondary customers often experience secondary vulnerabilities that manifest in family-centred transformative services as other- and self-related customer needs. Yet, a relational perspective on primary and secondary customers’ needs is lacking. The study analyses secondary customers’ needs and their relationship to primary customers’ needs to enhance well-being in customer entities. The service inclusion lens is used to understand customers’ experiences of vulnerability.

Design/methodology/approach

The study uses an exploratory approach. The data consists of ethnographic observations and interviews of elderly residents (primary customers), their family members (secondary customers) and nurses in two nursing homes.

Findings

Primary and secondary customers’ needs are interrelated (or unrelated) in four ways: they are separate, congruent, intertwined or discrepant. The vulnerability experiences fluctuate in intensity and over time, individually reflecting on these need dimensions.

Research limitations/implications

The study contributes to service research concerning customers’ experiences of vulnerability, secondary customers and their inclusion in services. Primary customers’ service inclusion may increase/decrease secondary customers’ service inclusion and their experience of vulnerability. Moreover, secondary customers’ inclusion is often necessary to foster primary customers’ inclusion and well-being.

Practical implications

Fostering service inclusion and well-being for primary and secondary customers requires balanced inclusion and acknowledging the needs of both groups. Service providers may need to act as moderators within customer entities if discrepant needs occur.

Originality/value

The study addresses the under-researched areas of family members’ customer needs, their relation to primary customers’ needs, experiences of secondary vulnerability and context-related vulnerability.

Details

Journal of Services Marketing, vol. 35 no. 6
Type: Research Article
ISSN: 0887-6045

Keywords

Article
Publication date: 11 November 2014

Shih-chuan Chen

– The purpose of this paper is to analyse the information needs of family caregivers of cancer patients. Information sources used by the caregivers were also examined.

1986

Abstract

Purpose

The purpose of this paper is to analyse the information needs of family caregivers of cancer patients. Information sources used by the caregivers were also examined.

Design/methodology/approach

We interviewed 15 family caregivers (nine females, six males) in Taiwan for this study. The participants were aged from 23 to 67 years, and all except two had attained college or higher degrees. Their relationships with patients included spousal, parental, and that of son or daughter.

Findings

Family caregivers’ information needs varied along the cancer journey, and they used various information sources to satisfy these needs. Demographic variables affected the information-seeking behaviour of the family caregivers.

Originality/value

The majority of studies on this topic have been based in western countries. This paper reveals the importance of considering cultural factors. The findings can assist researchers in gaining a greater understanding of the information-seeking behaviour of family caregivers of cancer patients worldwide.

Details

Aslib Journal of Information Management, vol. 66 no. 6
Type: Research Article
ISSN: 2050-3806

Keywords

Open Access
Article
Publication date: 30 April 2020

Azlinda Azman, Nor Amalina Jali, Paramjit Singh Jamir Singh, Jafri Malin Abdullah and Haidi Ibrahim

Advanced medical technology has reduced the mortality rate among traumatic brain injury (TBI) patients. This, however, has led to an increasing number of surviving patients with a…

3927

Abstract

Purpose

Advanced medical technology has reduced the mortality rate among traumatic brain injury (TBI) patients. This, however, has led to an increasing number of surviving patients with a major disability. As a consequence, these patients need attentive care which becomes an important issue for the society, particularly family members. Thus, this paper aims to review some of the salient roles, challenges and needs of the family caregivers in caring or nursing for their family members diagnosed with TBI.

Design/methodology/approach

An inclusive search of the literature was undertaken to identify the family roles, challenges and needs in supporting and nursing TBI patients.

Findings

Previous studies have shown that the family needs to address two important aspects of taking care of TBI patients, which involve emotional and physical affairs. Hence, it is essential for the family members to have adequate information on healing treatment, nursing and care methods, financial support, support groups, managing self-care and, more importantly, emotional and social support.

Originality/value

This paper is not currently under consideration, in press or published elsewhere. In Malaysian culture, nursing disabled patients have always been a family responsibility. The role of nursing the patients has been done domestically and is considered a private affair. In order to execute the role, some put the patient needs as their priority and leave aside their needs and matters.

Details

Journal of Health Research, vol. 34 no. 6
Type: Research Article
ISSN: 0857-4421

Keywords

Article
Publication date: 2 November 2020

Mayuko Tsujimura, Hiroo Ide, Wenwei Yu, Naonori Kodate, Mina Ishimaru, Atsuko Shimamura and Sayuri Suwa

This study aims to compare the level of needs for home-care robots amongst older adults, family caregivers and home-care staff and clarify the factors constituting these needs.

Abstract

Purpose

This study aims to compare the level of needs for home-care robots amongst older adults, family caregivers and home-care staff and clarify the factors constituting these needs.

Design/methodology/approach

A cross-sectional, anonymous questionnaire survey was administered. It included 52 items related to needs for home-care robots rated on a four-point Likert scale. Means and standard deviations were calculated, and the Kruskal-Wallis test was performed for each item. Factor analysis was conducted on the needs of home-care staff.

Findings

Responses from 79 older adults, 54 family caregivers and 427 home-care staff were analysed. For all three groups, the level of agreement was high for the following needs: to inform family and support personnel immediately when older adults fall, about their location in case of natural disasters and about mismanagement of fire by older adults with dementia. For family caregivers and home-care staff, the level of need concerning monitoring was higher than for older adults. Extracted using factor analysis, the six factors representing the essential needs for home-care robots were risk minimisation, daily monitoring of the physical condition, supporting activities of daily living (ADL) and instrumental ADL, pre-empting problems, communication and miscellaneous support.

Originality/value

The results showed that the education of caregivers and the co-design process of robot development should involve home-care staff, older adults and family caregivers, which are important for making decisions about the use of home-care robots for older adults.

Details

Journal of Enabling Technologies, vol. 14 no. 4
Type: Research Article
ISSN: 2398-6263

Keywords

Article
Publication date: 23 July 2018

Konstantina Martzoukou and Simon Burnett

This paper presents the research findings of the “Syrian New Scots’ Information Literacy Way-finding practices” research project, funded by the Information Literacy Group of the…

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Abstract

Purpose

This paper presents the research findings of the “Syrian New Scots’ Information Literacy Way-finding practices” research project, funded by the Information Literacy Group of the Chartered Institute of Library and Information Professionals. The purpose of this paper is to explore the information needs of “Syrian New Scots” (the preferred name for refugees in Scotland), their habitual and adaptive information literacy practices and the barriers and enablers they encounter within their new socio-cultural setting via their interactions with people, tools and processes.

Design/methodology/approach

Primary data were collected via interviews with three Local Authority Leads for Syrian Resettlement and focus groups with Syrian New Scots in three geographical locations in Scotland: two rural areas and one urban. Syrian research subjects were also involved in a drawing exercise that helped to contextualise the findings.

Findings

The main information needs expressed by participants revolved around the learning of English language which was linked to addressing health-related information needs, well-being and community engagement. All participants also highlighted the issue of socio-cultural differences in fulfilling everyday life information needs (such as health and housing). Information provision to Syrian New Scots requires a more structured process that acknowledges personalised information needs and it is tailored to the different stages of the adaptation process. The findings suggest that the “ways of knowing” that Syrian refugees bring with them are converging information experiences of past and new knowledge structures gained via different socio-cultural and migration experiences.

Originality/value

The research findings of this project will be of interest to local and regional support organisations and community volunteer groups who contribute to the social well-being and social integration of Syrian refugees. In addition, they may be of interest to public libraries due to their role as centres for educational and cultural orientation sessions, and as places of support for newly settled Syrian refugees and the communities that embrace them.

Details

Journal of Documentation, vol. 74 no. 5
Type: Research Article
ISSN: 0022-0418

Keywords

Article
Publication date: 1 April 2004

Ruth Townsley, Debby Watson and David Abbott

Recent government policies in relation to children stress the importance of service integration and partnership working, with particular emphasis on combating social exclusion…

Abstract

Recent government policies in relation to children stress the importance of service integration and partnership working, with particular emphasis on combating social exclusion. With reference to findings from a three‐year empirical study, this article examines some key elements of the process of multi‐agency working in services for disabled children with complex health care needs. It highlights some of the barriers to effective partnerships and lists some pointers for policy and practice.

Article
Publication date: 1 December 2006

Jessica Asscher, Jo Hermanns and Maja Deković

The prevalence, correlates (child behaviour problems and negative parenting) and determinants (risk and protective factors) of parental need for support were examined in a…

Abstract

The prevalence, correlates (child behaviour problems and negative parenting) and determinants (risk and protective factors) of parental need for support were examined in a community sample of 177 mothers with a child aged 1.5‐3.5 years, in order to draw a profile of families that need parenting support. A substantial number of the mothers reported needing support (40% reported need for information, 10% reported family and social support needs). This need was related to child behaviour problems and to negative parenting. Maternal depression, difficult temperament of the child and negative life events, as well as total number of risk factors, significantly predicted the need for support. Satisfaction with support (but not number of support sources) acted as a protective factor.

Details

Journal of Children's Services, vol. 1 no. 4
Type: Research Article
ISSN: 1746-6660

Keywords

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