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 and Tables 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.

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
  • Psychology, Medicine
    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.

Why do parents recommend clitoral surgery? Parental perception of the necessity, benefit, and cost of early childhood clitoral surgery for congenital adrenal hyperplasia (CAH)

TLDR
It is concluded that parents of girls with CAH may not receive psychologically and ethically informed counselling to encourage critical reflections prior to authorizing genital surgery.
...

References

SHOWING 1-10 OF 44 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.

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.

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.

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.

Psychosexual development in adolescents and adults with disorders of sex development--results from the German Clinical Evaluation Study.

TLDR
Assessment of psychosexual development in adolescents and adults with different forms of Disorders of sex development found partnership and sexuality were identified to be difficult areas of life and individuals with DSD should get support from a multiprofessional team with competency in assessing and counseling issues regarding relationships and sexuality.

DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey

TLDR
The findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.