Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development.

@article{Streuli2013ShapingPI,
  title={Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development.},
  author={J{\"u}rg Caspar Streuli and Effy Vayena and Yvonne Cavicchia-Balmer and Johannes Huber},
  journal={The journal of sexual medicine},
  year={2013},
  volume={10 8},
  pages={
          1953-60
        }
}
INTRODUCTION The management of disorders or differences of sex development (DSD) remains complex, especially with respect to parents' decision for or against early genitoplasty. Most parents still tend to disfavor postponing surgery until the child is old enough to provide consent. AIM To identify the determinants of parental decisions for or against early sex assignment surgery in DSD children, and in particular to assess the influence of contrasting behavior of health-care professionals and… 

Figures, Tables, and Topics from this paper

Shaping parents, shaping penises: How medical teams frame parents’ decisions in response to hypospadias
TLDR
The analysis suggests that medical professionals' engagement with parents underestimates the effect of framing in influencing parental decisions about hypospadias surgery, suggesting opportunities to support the flourishing of children whose genital appearance raises the question of medical intervention.
Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent
TLDR
The findings indicate that controversial issues and uncertainties mainly revolve around surgical interventions but also around the question of how to adequately consider the consent of minors and how to deal with intersex in the family and on lack of psychosocial counseling close to place of residence.
Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd)
TLDR
Having a child with dsd is associated with a high need for PsySupp in parents, in particular, parents of children with XY-dsd with androgen effects other than hypospadias expressed a highneed of PsySupp.
Hypospadias surgery: understanding parental emotions, decisions and regrets
  • K. Roen
  • Medicine
    International Journal of Impotence Research
  • 2022
This paper builds an argument about genital surgery in the context of medical treatment of children and young people with variations in sex characteristics. First, I set out what is known from
Psychosocial care and support in the field of intersex/diverse sex development (dsd): counselling experiences, localisation and needed improvements
TLDR
An exploratory online study investigating counselling experiences and the ideas that different groups of participants have concerning the localisation of counselling structures and improving care shows a gap between receiving psychosocial and medical care in the group of adult lived-experience experts, who had received less psychossocial care than medical interventions.
Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics
TLDR
Clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions, finding that clinicians and parents aim for parent-centered rather than infant-centered care.
Intersex or Diverse Sex Development: Critical Review of Psychosocial Health Care Research and Indications for Practice
  • K. Roen
  • Medicine, Psychology
    Journal of sex research
  • 2019
TLDR
Recommendations concerning health care communication, the importance of taking time for emotion, and the process of building supportive relationships are offered, indicating how psychosocial professionals can contribute to health care and well-being in the context of dsd when appropriately resourced and trained.
Special Parents for "Special" Children? The Narratives of Health Care Providers and Parents of Intersex Children.
TLDR
Analysis of interviews with parents of intersex children and healthcare professionals specializing in intersex conditions in Switzerland and Germany finds that some parents projected this specialness upon their children, viewing the condition as a special gift, and as a possibility of personal growth.
Recommendations for the Establishment of Disorders/Differences of Sex Development Interdisciplinary Care Clinics for Youth
TLDR
Recommendations for establishing an interdisciplinary care clinic for youth with disorders/differences of sex development are provided, based largely on experiences at an established DSD clinic, as well as observations of multiple clinics across the United States.
A shared decision-making tool for individuals living with complete androgen insensitivity syndrome.
TLDR
An organized approach to long-term delivery of compassionate care and accurate information can be facilitated for patients with CAIS by the use of a shared decision-making checklist.
...
1
2
3
4
5
...

References

SHOWING 1-10 OF 45 REFERENCES
Children with disorders of sex development: A qualitative study of early parental experience
TLDR
Parents' experiences and gaps in understanding can be used to inform the clinical care of patients with DSD and their families.
Parents need to protect: influences, risks and tensions for parents of prepubertal children born with ambiguous genitalia.
TLDR
The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses, drawing attention to the parents' need to be knowledgeable about the impact that disorders of sex development can have on family's emotional, psychosocial well-being and decision-making.
Medical treatment of intersex: parental perspectives.
TLDR
Most parents of minor females with CAH who were born with genital ambiguity indicated that they were well informed and involved in the medical care given to their daughters, and in most instances parents indicated that genital surgery was indicated during infancy and should be undertaken even at the risk of reducing genital sensitivity.
Primary Caregivers of Children Affected by Disorders of Sex Development: Mental Health and Caregiver Characteristics in the Context of Genital Ambiguity and Genitoplasty
TLDR
To determine the relationship between having a child with a DSD including ambiguous external genitalia, as well as the decision of whether or not to have early genitoplasty for that child, on the mental health and parenting characteristics of caregivers, the Beck Depression Inventory 2nd Edition (BDI-2) and Beck Anxiety Index (BAI) were used.
Gender assignment and medical history of individuals with different forms of intersexuality: evaluation of medical records and the patients' perspective.
TLDR
The majority of participants had genital surgery to correct the appearance of their genitalia and/or to enable sexual functioning and the diagnostic groups differ not only in amount and invasiveness of experienced surgical and medical treatment but also in the subjective and retrospective evaluation of the treatment measures and in the amount of reported psychological distress.
Long-term psychosocial adjustments, satisfaction related to gender and the family equations in disorders of sexual differentiation with male sex assignment
TLDR
Despite moral, social and economic support provided by the parents, children with DSD continue to have apprehensions in social adjustments, leading to apprehension before marriage.
Results from a pediatric surgical centre justify early intervention in disorders of sex development.
TLDR
Girls had better anatomical outcomes than boys, and gender dysphoria risks were low in both sexes, and early intervention is generally associated with positive outcomes for patients and parents.
Genital Surgery for Disorders of Sex Development: Implementing a Shared Decision-Making Approach
TLDR
This work presents a 6-step model for shared decision-making in decisions about genital surgery for disorders of sex development, and shows how an SDM process can facilitate the increased sharing of relevant information essential for making important health care decisions.
Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents
TLDR
Three leading ethical principles that apply to DSD management are identified: to foster the well-being of the child and the future adult, to uphold the rights of children and adolescents to participate in and/or self-determine decisions that affect them now or later, and to respect the family and parent–child relationships.
Attitudes of adult 46, XY intersex persons to clinical management policies.
TLDR
The majority of adult patients with intersexuality appeared to be satisfied with gender and genital status, and did not support major changes in the prevailing policy, however, a significant minority was dissatisfied and endorsed policy changes.
...
1
2
3
4
5
...