Dataset Information

Defining health-related quality of life for young wheelchair users: A qualitative health economics study.

ABSTRACT:

Background

Wheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their parents define health-related quality of life in relation to mobility impairment and wheelchair use.

Methods

The sampling frame was children with impaired mobility (?18 years) who use a wheelchair and their parents. Data were collected through semi-structured face-to-face interviews conducted in participants' homes. Qualitative framework analysis was used to analyse the interview transcripts. An a priori thematic coding framework was developed. Emerging codes were grouped into categories, and refined into analytical themes. The data were used to build an understanding of how children with impaired mobility define health-related quality of life in relation to mobility impairment, and to assess the applicability of two standard measures of health-related quality of life.

Results

Eleven children with impaired mobility and 24 parents were interviewed across 27 interviews. Participants defined mobility-related quality of life through three distinct but interrelated concepts: 1) participation and positive experiences; 2) self-worth and feeling fulfilled; 3) health and functioning. A good degree of consensus was found between child and parent responses, although there was some evidence to suggest a shift in perception of mobility-related quality of life with child age.

Conclusions

Young wheelchair users define health-related quality of life in a distinct way as a result of their mobility impairment and adaptation use. Generic, preference-based measures of health-related quality of life lack sensitivity in this population. Development of a mobility-related quality of life outcome measure for children is recommended.

SUBMITTER: Bray N

PROVIDER: S-EPMC5472290 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Defining health-related quality of life for young wheelchair users: A qualitative health economics study.

Bray Nathan N Noyes Jane J Harris Nigel N Edwards Rhiannon Tudor RT

PloS one 20170615 6

<h4>Background</h4>Wheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their ...[more]

PMID: 28617820

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Project description:The United Nations has called for countries to improve access to mobility devices when needed. The World Health Organization has published guidelines on the provision of manual wheelchairs in less-resourced settings. Yet little is known about the extent to which appropriate wheelchairs are available and provided according to international guidelines. This study's purpose was to describe wheelchair users' experiences receiving services and acquiring wheelchair skills in urban and peri-urban areas of Kenya and the Philippines.Local researchers in Nairobi and Manila interviewed 48 adult basic wheelchair users, with even distribution of those who had and had not received wheelchair services along with their wheelchair. Recordings were transcribed in the local language and translated into English. The study team coded transcripts for predetermined and emergent themes, using Atlas-ti software. A qualitative content analysis approach was taken with the WHO service delivery process as an organizing framework.Wheelchair users frequently described past experiences with ill-fitting wheelchairs and little formal training to use wheelchairs effectively. Through exposure to multiple wheelchairs and self-advocacy, they learned to select wheelchairs suitable for their needs. Maintenance and repair services were often in short supply. Participants attributed shorter duration of wheelchair use to lack of repair. Peer support networks emerged as an important source of knowledge, resources and emotional support. Most participants acknowledged that they received wheelchairs that would have been difficult or impossible for them to pay for, and despite challenges, they were grateful to have some means of mobility. Four themes emerged as critical for understanding the implementation of wheelchair services: barriers in the physical environment, the need for having multiple chairs to improve access, perceived social stigma, and the importance of peer support.Interventions are needed to provide wheelchairs services efficiently, at scale, in an environment facilitating physical access and peer support, and reduced social stigma.Not applicable since this was a descriptive study.

Project description:BackgroundThe concept of health-related quality of life and education integrates the bio-psychosocial perspective of health and the multidimensional potentialities of education for wellbeing. This present work is especially relevant to young people because understanding the interaction between health and education can facilitate the design of preventive policies. The research examines the way in which the educational level of young people from an urban district in the city of Zaragoza (Casablanca) has an influence on their health-related quality of life (HRQOL).MethodsA cross sectional survey was undertaken in the Casablanca district of Zaragoza (Spain). Participants were not randomly selected; their numbers reflected the areas where they lived with respect to age and sex distribution. It comprised 122 boys and 122 girls, aged between16 and 29, living in the neighbourhood are: Viñedo Viejo, Las Nieves and Fuentes Claras. These three residence zones are markedly different in terms of socioeconomic composition. The questionnaire included the following information: socioeconomic characteristics (sex, age, educational level, employment status, residence zone), an assessment of health (health problems, diagnosis and medication in the last 2?weeks) and HRQOL (WHOQOL-BREF dimensions: mental health; physical health; social relations; and environment). ANOVA and four regression models were used to assess the role, direction and intensity of educational level on HRQOL.ResultsThe results show that the higher the level of education, the better the level of HRQOL. The biggest impact of education was on the mental health dimension, but this influence was modulated by sex and residence zone. The value of the interaction of education and residence zone was more significant than educational level alone. HRQOL of girls is more sensitive to education, being a student and residence zone than the HRQOL of boys.ConclusionsThe dimensions of HRQOL are influenced by educational level. The influence is greatest among girls and the youngest members of the poorest area of the district. Public authorities should contemplate the development of an equitable education system from the beginning of the life cycle as a public health strategy.

Project description:Today's health care environment encourages health care consumers to take an active role in managing their health. As digital natives, young educated adults do much of their health information management through the Internet and consider it a valid source of health advice. However, the quality of information on health websites is highly variable and dynamic. Little is known about the understandings and perceptions that young educated adults have garnered on the quality of information on health websites used for health care-related purposes.To fill this gap, the aim of this study was to develop a conceptual framework of health website information quality with quality dimensions (ie, criteria) and associated quality drivers (ie, attributes) specified in the context of young educated adults' use of health websites for health care-related purposes. This aim was achieved by (1) identifying information quality dimensions of health websites from the perspective of young educated adults; (2) identifying the importance ratings of these quality dimensions; and (3) constructing a framework of health website information quality with quality dimensions and associated drivers specified in the context of young educated adults' use of health websites for health care-related purposes.The study employed both qualitative and quantitative methods. Methods included semistructured group interviews and an individual quality assessment exercise grounded in visiting various websites and responding to Likert scale questions regarding the importance ratings of information quality dimensions and open-ended questions with specifying website quality drivers. Study participants included junior and senior undergraduate and graduate students in business, allied health, and public health majors. Qualitative, open-coding procedures were used to develop the conceptual framework reflecting the participants' means of assessing information quality on health websites.Five dimensions of information quality for health websites were identified: Completeness of information, Understandability of information, Relevance of information, Depth of information, and Accuracy of information. Completeness of information and Understandability of information were rated as the two most important quality dimensions by the study participants. Results indicated that these five information quality dimensions for health websites were supported by the following main driver themes: Content, Design, Links, Consumer resources, Search functionality, Supporting references, User focus, Content FAQ, Open access, Policy statements, and Site performance.This study contributes to the literature by developing a health website information quality conceptual framework with quality dimensions and associated drivers specified for a young educated adult population. The detailed quality drivers supporting the corresponding quality dimensions provide a rich picture of young educated adults' perceptions on health website information quality. This framework can be used to guide the development of health websites, as well as the foundation for a means to evaluate health information from existing health websites with young educated adults as the target audience.

Dataset Information

Defining health-related quality of life for young wheelchair users: A qualitative health economics study.

Background

Methods

Results

Conclusions

Publications

Defining health-related quality of life for young wheelchair users: A qualitative health economics study.

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