For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely ...recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself.
This qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.
Two key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians' roles and responsibilities in decision-making, and (2) the specific influences on paediatricians' choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation.
Despite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians' considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.
Not applicable.
Background/objectivesShared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find ...benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation.DesignIndividual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors.SettingAcute intensive and long-term outpatient paediatric care in Victoria, Australia.Participants18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period.ResultsThree key themes in a preparatory process (termed ‘shepherding’) were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes.ConclusionsShepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child’s health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians’ decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.
During the debates about the legalization of Voluntary Assisted Dying (VAD) in Victoria, Australia, the presence of anti-VAD health professionals in the medical community and reported high rates of ...conscientious objection (CO) to VAD suggested access may be limited. Most empirical research on CO has been conducted in the sexual and reproductive health context. However, given the fundamental differences in the nature of such procedures and the legislation governing it, these findings may not be directly transferable to VAD. Accordingly, we sought to understand how CO operates in the context of VAD. Prior to the implementation of the VAD legislation in June 2019, we conducted semi-structured interviews with seventeen health professionals with a self-declared CO to VAD, to explore what motivated their CO. Participants identified multiple motivations, which can be broadly categorized as: concerns for oneself; concerns for patients; concerns about the current Victorian legislation; and concerns for the medical profession. Participants’ moral commitments included personal, professional, and political commitments. In some cases, one’s CO was specific to Victoria’s current legislation rather than VAD more broadly. Our findings suggest CO motivations extend beyond those traditionally cited and suggest a need to better understand and manage CO in the healthcare context.
Aim
Parents' role as end‐of‐life decision‐makers for their child has become largely accepted Western health‐care practice. How parents subsequently view and live with the end‐of‐life decision (ELD) ...they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end‐of‐life decision‐making, bereaved parents were asked about the aftermath of their decision‐making.
Methods
A qualitative methodology was used. Semi‐structured interviews were conducted with parents who had discussed ELDs for their child who had a life‐limiting condition and had died. Data were thematically analysed.
Results
Twenty‐five bereaved parents participated. Results indicate that parents hold multi‐faceted views about their decision‐making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision‐maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non‐decisional matters, such as the child's suffering or not knowing the cause of death.
Conclusion
Results suggest that parents can live well with the ELDs they made for their child. End‐of‐life decision‐making knowledge is confirmed and extended, and clinical support for parents informed.
Policy makers in developed countries have long considered the education system an avenue for supporting mental health care for children. Whilst educators have identified many challenges to providing ...this support (e.g. non-core role, stigma, overcrowded curriculum), understanding clinicians' views on the role of educators and schools and how clinicians and schools could work together to achieve good mental health outcomes are important questions. However, clinician voices in how schools and health should work together for children's mental health care are frequently missing from the debate. We aimed to report clinicians' views about how the education system could support student's mental health and improve access to mental health care for children and adolescents.
143 clinicians (approximately 35 each of child and adolescent psychiatrists, pediatricians, child psychologists and general practitioners (GPs)) from the states of Victoria and South Australia participated in semi-structured phone interviews between March 2018 and February 2019. Inductive content analysis was applied to address the broad study aims.
Key themes emerged: (1) The role of schools in supporting individual children; (2) School based programs to support children and families; and (3) Challenges of implementing these suggestions. Clinicians across all professional groups suggested the education system could play an important role in improving access to mental health services through harnessing existing staff or co-locating mental health clinicians. They also suggested schools could identify at risk children and implement coping and social skills programs.
Schools and educators could play a key role in prevention and early intervention of children's mental health problems. However, before recommending exactly how to do this, key evidence gaps need to be addressed.
Fertility in Turner syndrome Hewitt, Jacqueline K.; Jayasinghe, Yasmin; Amor, David J. ...
Clinical endocrinology (Oxford),
November 2013, Letnik:
79, Številka:
5
Journal Article
Recenzirano
Odprti dostop
Summary
There is increasing interest in fertility and use of assisted reproductive technologies for women with Turner syndrome (TS). Current parenting options include adoption, surrogacy, and ...spontaneous and assisted reproduction. For women with TS, specific risks of pregnancy include higher than usual rates of spontaneous abortion, foetal anomaly, maternal morbidity and mortality. Heterologous fertility assistance using oocytes from related or unrelated donors is an established technique for women with TS. Homologous fertility preservation includes cryopreservation of the patient's own gametes prior to the progressive ovarian atresia known to occur: preserving either mature oocytes or ovarian tissue containing primordial follicles. Mature oocyte cryopreservation requires ovarian stimulation and can be performed only in postpubertal individuals, when few women with TS have viable oocytes. Ovarian tissue cryopreservation, however, can be performed in younger girls prior to ovarian atresia – over 30 pregnancies have resulted using this technique, however, none in women with TS. We recommend consideration of homologous fertility preservation techniques in children only within specialized centres, with informed consent using protocols approved by a research or clinical ethics board. It is essential that further research is performed to improve maternal and foetal outcomes for women with TS.
It is now ethical orthodoxy that parents should be involved in the decision‐making about their children's health care. This extends to decisions about whether to continue or to limit life‐sustaining ...medical treatment for a child with a life‐limiting or life‐threatening condition. What remains contested and uncertain is the extent and nature of parental involvement, especially in this emotionally charged situation. In particular, should it be the parents, who are the ultimate decision‐makers, taking final responsibility, should it be a shared decision, or should it be a medical decision that parents are simply asked to consent to?
One approach to this issue is to consider the in‐principle ethical arguments and weigh their merits. The two key principles here are parental rights and authority, and the best interests of child, and the contested issue is what to do if these appear to clash. Another approach is to consider the principles in the practical clinical context. What would be the implications and consequences of adopting the model of parents as final decision‐makers? Are parents able to carry out this role, and do they really want it? What is the effect on parents of taking this role? Answers to these questions could modify the in‐principle ethical position. In this paper, we review the empirical evidence currently available on these questions, in relation to parents of infants and young children. Overall, the literature suggests that parents do want to be involved and do not suffer adverse psychological consequences from their involvement. However, the crucial ethical implication of the evidence is that the level and nature of parental involvement in decision‐making should be negotiated with the parents in each case, because parents have a range of different views about taking final responsibility for decisions.
In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause ('Section 8') was introduced requiring doctors with a conscientious objection to abortion to refer women to ...another provider. This study reports the views of abortion experts on the operation of Section 8 of the Abortion Law Reform Act in Victoria.
Nineteen semi-structured qualitative interviews were conducted with purposively selected Victorian abortion experts in 2015. Interviews explored the impact of abortion law reform on service provision, including the understanding and implementation of Section 8. Interviews were transcribed verbatim and analysed thematically.
The majority of participants described Section 8 as a mechanism to protect women's right to abortion, rather than a mechanism to protect doctors' rights. All agreed that most doctors would not let moral or religious beliefs impact on their patients, and yet all could detail negative experiences related to Section 8. The negative experiences arose because doctors had: directly contravened the law by not referring; attempted to make women feel guilty; attempted to delay women's access; or claimed an objection for reasons other than conscience. Use or misuse of conscientious objection by Government telephone staff, pharmacists, institutions, and political groups was also reported.
Some doctors are not complying with Section 8, with adverse effects on access to care for some women. Further research is needed to inform strategies for improving compliance with the law in order to facilitate timely access to abortion services.
considerable time and resources
are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and ...function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institution's interests, as well as being overprotective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.
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