Scoping Review of Self-Advocacy Education Interventions to Improve Care

Schmidt, Elizabeth K.; Faieta, Julie; Tanner, Kelly

doi:10.1177/1539449219860583

Cited by 10 publications

(10 citation statements)

References 32 publications

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“…This corresponds with previous literature on LVS delivery [ 25 , 50 ] and implies that patients in need of LVS, but who lack self-advocacy skills are especially at risk of not being referred to LVS. Research in other patient populations suggests that self-advocacy is a teachable skill that contributes to an individualized care trajectory that fits patients’ needs, preferences and values [ 51 , 52 ]. Furthermore, communication aids for patients in medical consultations, for example Question Prompt Lists, may help patients to express their needs and enhance patient participation and information provision [ 53 ].…”

Section: Discussionmentioning

confidence: 99%

Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: a qualitative study

Stolwijk

Nispen

Ham

et al. 2023

BMC Health Serv Res

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Background Underutilization of and lack of access to low vision services (LVS) has been reported internationally. The purpose of this study was to identify barriers and facilitators in LVS referral procedures and service delivery from both the perspective of people with visual impairment and professionals from different eye care providers in the Netherlands. Methods A qualitative study in the Netherlands was conducted. Barriers and facilitators were explored through semi structured interviews with older adults with macular degeneration, diabetic retinopathy and/or glaucoma (n = 14), and healthcare professionals including ophthalmologists and LVS professionals (n = 16). Framework analysis was used for analyzing the interviews with Atlas.ti software. Results According to both patients and professionals, facilitators in LVS access and utilization are having motivation, self-advocacy, high participation needs and social support, as well as being negatively impacted by the impairment. Both samples found having good communication skills and informing patients about LVS as a healthcare provider to facilitate access. A long patient-provider relationship and the Dutch healthcare system were also mentioned as facilitators. Professionals additionally found long disease duration and the presence of low vision optometric services in the ophthalmic practice to promote access. Barriers that were reported by patients and professionals are lack of motivation, self-advocacy and acceptance of the impairment in patients. In addition, having low participation needs as a patient, lack of information provision by providers and time constraints in the ophthalmic practice were mentioned as barriers. Professionals also reported lack of social support, short disease duration of patients, a short patient-provider relationship and lack of coordination of care in the ophthalmic practice to hinder access. Conclusions Findings suggest that providers’ lack of information provision about LVS, especially to patients who are less assertive, hamper referral to LVS. Providers should have attention for patients’ LVS needs and actively inform them and their social network about LVS to facilitate access. Educating and training providers about how and when to address LVS may help to reduce barriers in the referral pathways. In addition, referral procedures may benefit from tools that make providers more aware of LVS.

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Section: Discussionmentioning

confidence: 99%

Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: a qualitative study

Stolwijk

Nispen

Ham

et al. 2023

BMC Health Serv Res

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“…The similarity of actions used in both age groups can reflect these children and adolescents’ ability to act on, manage, and self-advocate their needs, regardless of their age. Self-advocacy is assertiveness and willingness to represent one’s own interests in making life decisions when managing a disease or disability [ 23 , 37 ]. It involves knowing one’s abilities and needs to recognize problems and ways to address them, being prepared to fulfill these needs and solve problems, communicating with others to solve problems and fulfill needs, and initiating change, including negotiating with others.…”

Section: Discussionmentioning

confidence: 99%

“…The studies found that communication (i.e., how the child feels when speaking about celiac disease) scored highest compared to other health-related quality-of-life components [ 39 , 40 ]. The ability to effectively function in different challenging and complex situations and sufficient self-advocacy skills are imperative for the transitional process of gaining independence from childhood through adolescence and finally to adulthood [ 21 , 37 ]. Furthermore, developing self-advocacy at younger ages to facilitate smoother transitions is significant [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Meyer

2022

IJERPH

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Celiac disease (CD) is a chronic health condition treated by managing a lifelong, strict, and demanding gluten-free diet. Managing the diet entails effective use of self-management skills. This study aimed to explore self-generated procedures children and adolescents with CD in Israel perform when participating in food-related activities considering their self-management skills and health requirements. Participants included children and adolescents with CD, aged 8 to 18 years, that had been diagnosed more than 6 months prior to the study. Parents completed a demographic questionnaire and reported their child’s constancy in adherence to the diet. Children and adolescents were asked to share the things they do themselves to prepare for participating in the various activities. Responses were qualitatively analyzed, and common themes were identified and categorized using directed analysis. Participants were 126 children and adolescents (Mage = 12.33 yr, SD = 2.85), 67.5% of whom had been diagnosed more than 3 yr prior to the study. Based on parents’ reports, almost all (97.6%) participants “always adhered” to the diet. A total of 10 categories were defined from the qualitative responses describing 125 do and don’t actions used by the children and adolescents to self-manage their diet. The do and don’t actions encompass cognitive planning far beyond the mere act of avoiding gluten. These actions can serve as an initial database of suggested strategies to support acquiring independent self-management. Understanding the cognitive complexity of routinely carrying out the diet while actively participating in everyday activities can assist health professionals in building support and intervention programs, promoting effective self-management, and facilitating optimal adherence to the diet.

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“…In the context of health care, selfadvocacy is characterized by assertiveness and a willingness to represent one's own interests when managing a disease or disability; it is a learnable behavior that includes accessing relevant information and conveying personal preferences to health care providers. 70 Enabled by knowledge of self and rights, 71 self-advocacy can be improved by enhancing skills in communication, information seeking, problem solving, and securing support 72 that positively impacts health and quality of life. 73 Developing interventions to improve the self-advocacy of women with physical disabilities has the potential to empower them to address stigma and bias and other barriers in productive and self-affirming ways.…”

Section: Discussionmentioning

confidence: 99%

Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures

Kalpakjian

Kreschmer

Slavin

et al. 2020

Journal of Women's Health

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Background: Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health. Materials and Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework.Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged-knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity-all of which had some relationship with five major reproductive health issues-pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.

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Scoping Review of Self-Advocacy Education Interventions to Improve Care

Cited by 10 publications

References 32 publications

Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: a qualitative study

Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: a qualitative study

Promoting Effective Self-Management of the Gluten-Free Diet: Children’s and Adolescents’ Self-Generated Do’s and Don’ts

Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures

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