Patient-Centered Care: Caring for Families Affected by Disorders of Sex Development

2011 ◽  
pp. 135-142 ◽  
Author(s):  
Anthony J. Asciutto ◽  
Emily Haddad ◽  
Janet Green ◽  
David E. Sandberg
Keyword(s):  
Disorders Of Sex Development ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Sex Development ◽  
Centered Care

scholarly journals Quality of Life in Late-Treated Patients With Disorders of Sex Development: Insights for Patient-Centered Care

2019 ◽  
Vol 6 ◽  
Author(s):  
Annastasia Ediati ◽  
Gijsbert H. W. Verrips ◽  
Achmad Zulfa Juniarto ◽  
Sultana M. H. Faradz ◽  
Stenvert L. S. Drop ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disorders Of Sex Development ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Sex Development ◽  
Centered Care

Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics

2018 ◽  
Vol 59 (4) ◽  
pp. 520-535 ◽  
Author(s):  
Stefan Timmermans ◽  
Ashelee Yang ◽  
Melissa Gardner ◽  
Catherine E. Keegan ◽  
Beverly M. Yashar ◽  
...  
Keyword(s):  
Disorders Of Sex Development ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Genital Surgery ◽  
Clinical Uncertainty ◽  
Sex Development ◽  
Audio Recordings ◽  
Centered Care ◽  
Patient Advocates ◽  
Care Change

Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty about decision making. Since 2006, medical experts and patient advocates have argued for putting the child’s needs central as patient-centered care. Based on audio recordings of 31 parent–clinician interactions in three clinics of disorders of sex development, we analyze how parents and clinicians decide on genital surgery. We find that clinicians and parents aim for parent-centered rather than infant-centered care. Parents receive ambivalent messages about surgery: while clinicians express caution, they also present the surgery as beneficial. We examine how parents and clinicians reach agreement about surgery—differentiating parents who push strongly for surgery from parents who do not express any preconceived preferences about surgery and parents who resist surgery. We conclude that clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions.

GPS' PERCEPTION OF THE PATIENT ORIENTED INTERVENTIONS AS KEY ELEMENTS OF PATIENT CENTRED CARE FOR PEOPLE WITH MULTIMORBIDITY.pdf

2018 ◽  
Vol 28 (2) ◽  
pp. 561-565
Author(s):  
Radost Assenova ◽  
Levena Kireva ◽  
Gergana Foreva
Keyword(s):  
Chronic Conditions ◽  
Patient Centered Care ◽  
Self Management ◽  
Multiple Chronic Conditions ◽  
Positive Health ◽  
Patient Centered ◽  
Effective Response ◽  
Patient Centred Care ◽  
Centered Care ◽  
Health Related

Background: Patients with multimorbidity represent a significant portion of the primary healthcare population. For healthcare providers, managing patients with multiple chronic conditions represents a challenge given the complexity and the intensity of interventions. Integrated and patient-centered care is considered an effective response to the needs of people who suffer from multiple chronic conditions. According to the literature providing patient-centered care is one of the most important interventions in terms of positive health-related outcomes for patients with multimorbidity.Aim: The aim of the study is to evaluate the GPs’ perception of patient oriented interventions as key elements of patient centred care for patients with multimorbidity.Material and methods: A cross-sectional pilot study was conducted among randomly selected 73 GPs. A direct individual anonymous survey was performed to explore the opinion of respondents about the importance of two patient-oriented interventions, each one including specific elements of patient-centered care for patients with multimorbidity. The tool was developed as a result of the scoping review performed by Smith et al. (2012;2016). A 5-point Likert scale (0-not at all, 1-little, 2-rather, 3-much, 4-very strong) was used. The data were analysed using descriptive statistics. In processing the data, the software product for statistical analyses - SPSS version 17 was performed for Windows XP.Results: Our results show that both categories - providing patient-oriented approach and self-management support interventions were highly accessed by the respondents. The most frequent categories of interventions identified in our study were Creating individualized and adapted interventions, Performing regular contacts and Reinforcing adherence. Less frequently reported elements such as Considering relatives’ needs and Developing self-management plan are still underestimated by the Bulgarian GPs.Conclusions: The acceptance and understanding of innovative patient-centered interventions adapted to patients with multimorbidity could be accepted as a good indicator for improving health-related outcomes and care for patients with multiple chronic conditions.

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