Health Education Research: Education of Caregivers, Consumers, & Families

Sexuality issues and gynecologic care of adolescents with developmental disabilities.

Greydanus DE, Omar HA.  Pediatrics and Human Development, Michigan State University College of Human Medicine, Michigan State University/Kalamazoo Center for Medical Studies, 1000 Oakland Drive, Kalamazoo, MI 49008-1284, USA.  Pediatr Clin North Am. 2008 Dec;55(6):1315-35, viii.

All human beings are sexual from birth to death and all children and adolescents with or without disability or chronic illness must incorporate appropriate sexuality concepts into their processes of development from childhood to adolescence. This article considers sexuality issues and reproductive care of adolescents with developmental disabilities. Potential consequences of disability on sexuality are reviewed, including sexual abuse and sexual dysfunction. Comprehensive sexuality education is vital for normal growth and development of all youth including those with developmental disabilities.

Sexuality education and adolescents with developmental disabilities: assessment, policy, and advocacy.

Tice CJ, Hall DM.  School of Social Work, University of Maryland Baltimore County, 1000 Hilltop Circle, Baltimore, MD 21250, USA.  J Soc Work Disabil Rehabil. 2008;7(1):47-62.

People with disabilities are sexual beings who, like all of us, benefit from sexuality education that examines relationship skills and knowledge, attitudes, behaviors, and values that promote healthy sexuality within those relationships. This article provides an overview of landmark policies relevant to persons with disabilities, defines the strengths perspective in the context of curriculum development, and describes a survey built on this perspective that evaluates sexuality education curricula on the strengths rather than the deficits of people.


Qualitative analysis of parents’ information needs and psychosocial experiences when supporting children with health care needs.

Jackson R, Baird W, Davis-Reynolds L, Smith C, Blackburn S, Allsebrook J.

Section of Public Health, School of Health and Related Research, University of Sheffield, Sheffield, UK.  Health Info Libr J. 2008 Mar;25(1):31-7.

OBJECTIVE: To identify the information needs of parents of children with health care needs.

METHODS: A series of three focus groups and one in-depth interview were held with parents (n = 10, 90% female) in Barnsley, South Yorkshire, UK.

RESULTS: Findings were grouped into four themes: delivery of information; levels of support; relationship between the family and professional; and management of events. Parents expressed a preference for information to be delivered on a verbal, ‘one-to-one’ basis by a professional, supplemented by accessible, written reference materials. The provision of a contact telephone number for a named professional, so further information could be obtained when required, was identified as a key source of support. Participants emphasized the importance of being consulted about the care of their child, the interaction between professional and child, and also of being treated as an individual by the professional.

CONCLUSIONS: Delivery of information to parents may be most effective on a verbal, ‘one-to-one’ basis with a professional, in conjunction with written accessible general and child-specific reference materials. The importance to parents of the provision of contact details for a named professional and specialist nurse support is also emphasized. The psychosocial experiences of parents, along with the impact of the relationship between family and professional, and requirement for good channels of communication, must be taken into account by professionals during the care of children with health care needs. These findings have important implications for professionals and service providers for the future delivery of information to parents of children with health care needs.


A qualitative study of menopause among women with disabilities.

Harrison T, Becker H.  School of Nursing, The University of Texas at Austin, Austin, TX 78701, USA.  ANS Adv Nurs Sci. 2007 Apr-Jun;30(2):123-38.

Few studies have examined the way women with disabilities understand and make decisions regarding menopause. This report is a qualitative descriptive study detailing how women with varying mobility impairments view the menopausal transition. Nineteen women aged 42 to 64 years were interviewed regarding their menopausal experiences. Results described their experiences as minority groups of women with disabilities using a women’s ways of knowing framework. Overall, most women described menopause as a back burner issue, but maintained the need for accurate information from which to make informed decisions that might impact future health and functional outcomes.


Parents’ information needs about the treatment of their chronically ill child: a qualitative study.

Hummelinck A, Pollock K.   Pharmacist Pharmacy Department, Royal Shrewsbury Hospital, Mytton Oak Road, Shrewsbury SY3 8XQ, UK.  Patient Educ Couns. 2006 Aug;62(2):228-34. Epub 2005 Sep 1.

Effective information provision is a prerequisite for partnership between child patients, their parents and health professionals.

OBJECTIVES: To explore the complexity of parents’ information needs and how current information provision is evaluated.

METHODS: Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the paediatric department of a British district general hospital.

RESULTS: The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents in this study experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child’s condition. Parents’ complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy.

CONCLUSION: Parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare professionals. PRACTICE IMPLICATIONS: This study highlights the need for good communication based on professional awareness of how parents understand and experience their child’s illness, as well as the importance of sensitively individualising information provision to parents’ needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity.


Keeping It Together: an information KIT for parents of children and youth with special needs.

Stewart D, Law M, Burke-Gaffney J, Missiuna C, Rosenbaum P, King G, Moning T, King S.  CanChild Centre for Childhood Disability Research, Institute for Applied Health Sciences, McMaster University, Hamilton, ON, Canada.  Child Care Health Dev. 2006 Jul;32(4):493-500.

BACKGROUND: Provision and use of information about their children is a major concern to families who have a child with a disability. Strategies or systems to influence parents’ abilities to receive, give and use information in a way that is satisfying to them have not been well validated.

METHODS: This paper reports on the development and evaluation of a Parent Information KIT (‘Keeping It Together’) information management system and child advocacy tool. The KIT was designed to assist parents in giving, getting and organizing information in an effective way. The KIT was evaluated by a sample of 440 parents, with outcomes of use, utility, impact and perceptions of family-centred care measured at baseline, and after 6 months, and 15 months.

RESULTS: Parents’ perceptions of their ability, confidence and satisfaction when using information improved significantly after using the KIT. Parents’ perceptions of care, as measured with the Measure of Processes of Care, also improved significantly in the areas of ‘Enabling/Partnership’ and ‘Providing General Information’. Parents’ ratings of the use and utility of the KIT were associated with increased impact and, in turn, predicted improved perceptions of care.

CONCLUSION: Parents who received and actively used the Parent Information KIT experienced significant increases in their perception of their ability and self-confidence in getting, giving and using information to assist their child with a disability. Strategies for improving the use of the KIT among parents are discussed.


Effect of preventive dentistry training program for caregivers in community facilities on caregiver and client behavior and client oral hygiene.

Glassman P, Miller CE.  University of the Pacific School of Dentistry, San Francisco, CA, USA.  N Y State Dent J. 2006 Mar-Apr;72(2):38-46.

The influx of persons with developmental disabilities into community-based programs has required the development, expansion and improved integration of community-based services. The role of caregivers in these community settings has become pivotal. However, with regard to daily activities, oral hygiene is often a low priority. Few attempts have been made to study caregiver participation in oral disease prevention and practices. This study evaluated the effects of an indirect training program, where caregivers were trained but the ultimate effects were demonstrated in adult clients. In addition, these effects were demonstrated in community care settings. A multiple baseline design, across three group homes, included 11 adult clients with developmental disabilities. This study evaluated the effects of training, instruction to use training and coaching on the presence of caregivers during oral hygiene sessions, the duration of toothbrushing and plaque scores of the clients. The results of this investigation demonstrated that there was an increase in caregiver presence and duration of brushing with a concurrent decrease in plaque scores. Caregivers responding to social validation questionnaires believed that 8 out of 11 clients had increased skills. This study demonstrates that caregiver training, combined with specific instructions to use training information and coaching of caregivers, can have a positive impact on the oral health of individuals with developmental disabilities living in community settings.


A health toolkit for people with learning disabilities.

Hunt C, Rankine P, Blackmore R.  Northamptonshire Healthcare NHS Trust.  Nurs Times. 2006 Mar 21-27;102(12):34-6.

People with learning disabilities are likely to have greater health needs than the majority of the population but are less likely to access health services and receive treatment. This article reports on a local initiative to develop a toolkit that people with learning disabilities can use to help them address their health needs through a simple health check and a health action plan.


F2F Connection: a community health information needs assessment of Texas families who have children with chronic illnesses and/or disabilities and their care providers.

Huber J, Dietrich J, Cugini E, Burke S.  School of Library and Information Studies Texas Woman’s University 1130 John Freeman Boulevard Houston, Texas 77030.  J Med Libr Assoc. 2005 April; 93(2): 278–281.

The F2F Connection project is a collaborative effort involving the School of Library and Information Studies at Texas Woman’s University, Houston Academy of Medicine-Texas Medical Center (HAM-TMC) Library, and Family to Family Network (F2FN). The overarching goal of the project is to facilitate access to relevant electronic health information resources for families who have children with special needs. The objective of the initial phase of the project is to conduct an assessment of the community health information needs of families who have children with chronic illnesses and/or disabilities as well as of their care providers.  F2FN works with families, professionals, and friends of children with disabilities and/or chronic illnesses to create communities where all children belong and excel. F2FN provides information and referral services, educational programs, and direct support to this community. In addition to local programming, F2FN operates a training program, Connections, developed for people who are committed to helping the families of children with chronic illnesses and/or disabilities. Connections teaches families about working with school systems to further their children’s success. This program represents a collaborative effort between families and educators who share a common vision that all children have value and must have successful educational opportunities to accomplish their dreams.


Health literacy, morbidity, and quality of life among individuals with spinal cord injury.

Johnston MV, Diab ME, Kim SS, Kirshblum S.  Kessler Medical Rehabilitation Research and Education Corp, 1199 Pleasant Valley Way, West Orange, NJ 07052, USA.  J Spinal Cord Med. 2005;28(3):230-40.

OBJECTIVES: Health literacy has been related to indicators of health outcomes in a number of populations, but not in spinal cord injury (SCI). The current study aimed to describe levels of health literacy in SCI and to investigate its possible associations with morbidity, health-related quality of life, functional independence, community participation, and life satisfaction.

DESIGN: Cross-sectional survey of 107 community-living people with SCI recruited in a New Jersey outpatient SCI center. Primary measures were the Test of Functional Health Literacy in Adults (TOFHLA), standard questions about morbidity from the Behavioral Risk Factors Surveillance Study, the Craig Handicap Assessment and Reporting Technique (CHART), Short Form-12 (SF-12), and Diener’s Satisfaction with Life Scale.

RESULTS: Health literacy was marginal or inadequate (TOFHLA = 0-74) in only 14% of the sample. TOFHLA scores correlated significantly with physical health morbidity, even after control for severity of motor paralysis and education. American Spinal Injury Association (ASIA) Motor Scores were correlated with physical morbidity and CHART Physical Independence scores; and education was related to community Mobility, Occupation, and Economic Independence, and Satisfaction with Life scores, independent of other factors. Rasch analysis identified ceiling measurement limitations in the TOFHLA.

CONCLUSIONS: Health literacy levels in this sample were higher than those found in other groups. Health literacy was independently related to physical health morbidity, but its associations with other outcomes were limited, entwined with education, and affected by severity of injury. Future research might examine higher-level aspects of health literacy to overcome ceiling measurement problems. Mediators of the association between health literacy and morbidity, such as health self-care behaviors, should also be examined.