Strengthening the Therapeutic Alliance Between Parents of Children with Severe Neurologic Impairment and Healthcare Providers During Critical Decision-Making (T315B)

2021 ◽  
Vol 61 (3) ◽  
pp. 646
Author(s):  
Jori F. Bogetz ◽  
Hannah Lewis ◽  
Kelly J. Shipman ◽  
Danielle Jonas ◽  
Amy C. Trowbridge ◽  
...  
2021 ◽  
Author(s):  
Justin M Curley ◽  
Kristina M Clarke-Walper ◽  
Katie L Nugent ◽  
Joshua E Wilk

ABSTRACT Introduction U.S. Army healthcare providers’ use of profiles to document and communicate behavioral health (BH) condition limitations to commanders is vital to understanding both the individual soldier’s BH readiness for missions and, as an aggregate, the unit’s overall BH readiness status. Quantitative work exploring the link between soldier attitudes toward BH profiles and treatment utilization found that profiles may actually promote increases in treatment-seeking behavior in those receiving conventional BH services. BH provider attitudes on the subject, however, have not been quantitatively explored. Using data from the recently described Behavioral Health Readiness and Decision-Making Instrument (B-REDI) study, the current inquiry addresses this by examining BH providers’ pre-/post-B-REDI attitudes toward BH profiles, including therapeutic alliance, to better understand how BH profiles may impact BH treatment. Methods This study was approved by the WRAIR Institutional Review Board and is part of the larger B-REDI study. BH providers (n = 307) across five installations supporting active duty U.S. Army Divisions completed surveys longitudinally across three time points from September 2018 to March 2019. The survey specific to this study included five items, developed by WRAIR, assessing BH provider attitudes toward BH profiles. Of the providers who completed the survey, 250 (81%) consented to participate in the study and 149 (60%) completed the 3-month follow-up survey. Results Over 80% of BH providers expressed agreement with each of three items assessing rationale for issuing BH profiles in both the pre- and post B-REDI period. Specifically, most providers agreed that profiles facilitate commander support to the soldier, afford soldiers resources for recovery, and give commanders increased understanding of soldier health for mission planning. Twenty-six percent of BH providers agreed, 46% were neutral, and 28% disagreed on whether profile impact on the soldier was positive or not in the pre-B-REDI period, but there was a significant positive trend relative to baseline in the post B-REDI period. The vast majority of providers (≥94%) did not endorse agreement that BH profiles negatively impact therapeutic alliance in either the pre- or post-B-REDI period. Conclusions Assuming that therapeutic alliance and perceptions of BH profile impact on soldiers are useful proxy measures of how treatment utilization may be affected by profiling, this inquiry fails to establish any meaningful negative association between them. This may provide some additional reassurance to BH providers and policymakers that efforts to improve readiness decision-making, such as B-REDI, and increased profiling in conventional military BH settings may not negatively impact treatment utilization rates.


2021 ◽  
Vol 29 (10) ◽  
pp. 579-588
Author(s):  
Clementine Djatmika ◽  
Joanne Lusher ◽  
Jane Meyrick ◽  
James Byron-Daniel

Background Despite the steady increase in the number of women giving birth via caesarean section in the UK, little is understood about how shared decision making is implemented in obstetrics or what this means for women that have given birth via caesarean. The aim of this review is to assess narratives of women's experiences of caesarean birth as an informed choice and their involvement in this process. Methods A number of databases were searched, including MEDLINE via EBSCO, EMBASE via OVID, MIDIRS via OVID, Scopus, Wiley Online Library, Google Scholar and Ethos, as well as the reference sections of the included studies. Primary studies published between 1990–2020 were included and quality was assessed using the critical appraisal skills programme tool. Findings were analysed using a thematic synthesis framework to elicit higher order interpretations. Results A total of 11 studies were included in the final review. Quality assessment indicated the studies were generally of good quality, with the main limitations being in methodology quality indicators. Thematic synthesis identified eight subthemes within three main themes: ‘patient-doctor relationships’, ‘decision making as an emotional journey’ and ‘caesarean not really an informed “choice”’. The role of healthcare providers in promoting women's agency via patient-centred care was a prominent theme in women's narratives. Conclusions Women's decision making in consent to undergo caesarean births is a complex, emotionally driven process that can have a significant long-term psychological impact.


2020 ◽  
Author(s):  
Martha J. Decker ◽  
Noelle Pineda ◽  
Abigail Gutmann-Gonzalez ◽  
Claire D. Brindis

Abstract Background Although there is growing recognition of the importance of person-centered maternity care, the needs and perspectives of pregnant adolescents are rarely considered. The purpose of this study was to compare the maternity care experiences of Mexican-origin adolescents in Guanajuato, Mexico and Fresno, California from both youth and healthcare provider perspectives. Methods Qualitative interviews and focus groups were conducted with a total of 89 respondents, including pregnant and parenting adolescents as well as providers between December 2016 and July 2017. Adolescents also completed a short demographic survey prior to participation. Transcripts in English and Spanish were coded and thematically analyzed using Dedoose software. Results were compared by location and between youth and providers. Results Four themes emerged regarding patient-provider interactions: the need for communication and clear explanations, respectful versus judgmental providers, engaging youth in decision-making, and a focus on the age of the youth and their partners. While youth had similar perspectives and priorities in both locations, youth in Mexico reported more negative healthcare experiences than youth in California. Perspectives varied between the youth and providers, with providers in both California and Mexico identifying several structural challenges in providing quality care to adolescents. In California, challenges to supporting immigrant Latina adolescents and their families included language and translation issues as well as barriers to care due to immigration status and documentation. In both locations, providers also mentioned high patient caseloads and their own concerns about the youth’s life choices. Conclusion Youth-centered care requires more effective and respectful patient-provider communication, where adolescents are engaged in their healthcare decision-making and delivery options. Changes in patient-provider interactions can help improve the maternity care experiences and outcomes of Latina adolescents. Healthcare systems and providers need to reconfigure their approaches to focus on the needs and priorities of adolescents.


2021 ◽  
Author(s):  
Jama Ali Egal ◽  
Amina Essa ◽  
Rahma Yusuf ◽  
Fadumo Osman ◽  
Marie Klingberg- Allvin ◽  
...  

Abstract ObjectiveSomaliland has high levels of both maternal and infant mortality. This has been attributed, in part, to the fact that nearly 80% of births in the country take place at home, with women assisted by Traditional Birth Attendants (TBA) who have limited medical knowledge when it comes to obstetric complications. In this study we aim to capture multipara women’s decision-making when choosing the place of birth, illuminated by their experiences of maternity services in SomalilandDesignAn explorative qualitative approach using individual interviews conducted in Somaliland with 25 multiparous women who had experience of both a home and facility-based birth within the last three years.FindingsThe main finding of this study was the description of how valuable autonomy and respectful care were for Somaliland women. Respectful care and the cost of maternity services were vital parts of women’s autonomous decision-making when choosing a place of birth. Disrespectful care in maternity services made low-risk pregnancy women chose homebirth instead of a health facility birth. Women who had previous high-risk pregnancies that suggested they should be returnees to facility-based antenatal care, were still planning for a homebirth as their first choice.Key conclusionThis qualitative study was conducted in the fragile context of Somaliland and suggest a need to transform maternal and child health clinics into midwifery-led birthing centers that promote natural birth. It is further important to create new roles and responsibilities for TBAs that link them to the formal health system assuring timely health care seeking during pregnancy and in relation to delivery. There is a need to conduct a country-wide study on the availability and distribution of healthcare providers and to construct a long-term sustainable plan to assure quality and equal access to maternal health care in the country.


2018 ◽  
Vol 44 (9) ◽  
pp. 585-588 ◽  
Author(s):  
Rosemary Talbot Behmer Hansen ◽  
Kavita Shah Arora

Since USA constitutional precedent established in 1976, adolescents have increasingly been afforded the right to access contraception without first obtaining parental consent or authorisation. There is general agreement this ethically permissible. However, long-acting reversible contraception (LARC) methods have only recently been prescribed to the adolescent population. They are currently the most effective forms of contraception available and have high compliance and satisfaction rates. Yet unlike other contraceptives, LARCs are associated with special procedural risks because they must be inserted and removed by trained healthcare providers. It is unclear whether the unique invasive nature of LARC changes the traditional ethical calculus of permitting adolescent decision-making in the realm of contraception. To answer this question, we review the risk–benefit profile of adolescent LARC use. Traditional justifications for permitting adolescent contraception decision-making authority are then considered in the context of LARCs. Finally, analogous reasoning is used to evaluate potential differences between permitting adolescents to consent for LARC procedures versus for emergency and pregnancy termination procedures. Ultimately, we argue that the invasive nature of LARCs does not override adolescents’ unique and compelling need for safe and effective forms of contraception. In fact, LARCs may oftentimes be in the best interest of adolescent patients who wish to prevent unintended pregnancy. We advocate for the specific enumeration of adolescents’ ability to consent to both LARC insertion and removal procedures within state policies. Given the provider-dependent nature of LARCs and the stigma regarding adolescent sexuality, special political and procedural safeguards to protect adolescent autonomy are warranted.


2022 ◽  
pp. 275275302110687
Author(s):  
Kimberly A. Pyke-Grimm ◽  
Linda S. Franck ◽  
Bonnie Halpern-Felsher ◽  
Robert E. Goldsby ◽  
Roberta S. Rehm

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.


2021 ◽  
pp. bmjspcare-2020-002857
Author(s):  
Erin Denney-Koelsch ◽  
Denise Cote-Arsenault

ObjectivesWhen parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.MethodsThis study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.ResultsThirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.ConclusionFor shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
S. Van der Coelen ◽  
M Schleedoorn ◽  
S Nadesapillai ◽  
R Peek ◽  
D Braat ◽  
...  

Abstract Study question What are the experiences with the decision-making process of girls with Turner syndrome (TS) considering ovarian tissue cryopreservation (OTC), their parents and healthcare providers? Summary answer Offering a new option to preserve fertility in TS caused unrealistic hope leading to challenges for healthcare providers to fulfil the ideal of informed consent. What is known already Due to premature ovarian insufficiency, girls with TS have only a small chance of genetic offspring. OTC might increase these odds. Healthcare providers and scientist are still cautious in offering OTC to girls with TS because of the many uncertainties regarding OTC in this patient group. Hence, OTC is now offered to girls with TS between 2 and 18 years old in a research setting: the TurnerFertility study. Study design, size, duration A retrospective qualitative study consisting of a survey and focus groups. Within a year after counselling, families (n = 132) received a survey with 30 questions regarding their experiences with the decision-making process and also an invitation for a focus group. The focus groups were conducted between January and October 2019 and lasted 51-84 minutes. The topic lists were based on literature research and survey results. Results were analysed following a thematic analysis approach. Participants/materials, setting, methods This is a sub-study of the prospective intervention study within an academical medical centre. Focus groups were composed through purposive sampling. Focus group 1 (FG1) consisted of five gynaecologists involved in counselling, FG2 with seven paediatricians who referred girls for counselling, FG3 with nine parents of girls with TS between 2 and 12 years old and FG4 with three parents of girls with TS between 13 and 17 years old. Main results and the role of chance 90% of survey respondents appreciated counselling regarding fertility options and considered it an enrichment of existing healthcare. The individual consultation was rated as most contributing by 66% of the survey respondents, followed by the information meeting (37%) and decision aid (3%). The focus groups revealed that many had not discussed options for future parenthood with a healthcare provider before. Girls with TS and their parents indicated that the option of OTC raised hope for future genetic offspring, and at once made them feel like they had no choice but to take this chance. The small chance of success did not influence the decision for families who opted for OTC. Some parents who had to decide for their young daughter accepted OTC to give their daughter the option to decide herself whether to make use of the cryopreserved tissue later in life. Gynaecologists found it challenging to truly make families grasp a realistic perspective of OTC in TS and the associated mental and physical risks. Gynaecologists and paediatricians struggled with conflicting moral principles of non-maleficence against respect for autonomy: healthcare providers recognized the scientific relevance for the TS population, while it felt inconsistent with the disproportionate burden for some individual patients. Limitations, reasons for caution Because there was no validated survey for this topic in TS, we developed a survey based on literature research and experiences of a dedicated TS team. Among the survey responders and focus group participants a greater proportion decided for OTC compared to the overall counselled group (75% vs 60%). Wider implications of the findings This study gives insight in the issues to consider when implementing new technologies regarding fertility, in which parents have to decide for their child, where it is expected that anticipated decision regret plays a major role, or where healthcare providers experience conflicting duties as scientist and physician. Trial registration number not applicable


2021 ◽  
pp. 60-76
Author(s):  
Jeffrey D. Myers

Physician assistant (PA) training is rooted in treating the whole patient and developing a trusting and collaborative partnership with patients and their families. This foundation is critical in the advance care planning (ACP) process for patients who are seriously or terminally ill. Understanding the ACP process, the components and reasons behind them, and the tools for successful discussions and decision-making is a key skill set for all healthcare providers, including PAs. This chapter examines the components of ACP, including advance directives, the POLST paradigm, decision-makers, prognostication, documentation, and legacy planning. ACP is key in capturing what is most important to our patients in terms of their health, their life, and their goals related to both.


Author(s):  
Kamla Ali Al-Busaidi

This study aimed to investigate the physicians' attitude toward inter-organizational knowledge sharing system (IOKSS) deployment in the health sector in Oman. IOKSS in the health sector can be very crucial and results in several operational, strategic, social and economic benefits for healthcare providers and physicians. Previous research on inter-organizational systems (IOS) has focused on organizational adoption, particularly on vertically-linked organizations. Identifying major issues that are critical to physicians, the end users and key stakeholders, is crucial for IOKSS deployment. Based on data collected from physicians in Oman, results indicated that peers, the sector and knowledge workers, are critical factors to physicians' attitudes toward IOKSS. The study also indicated that physicians' attitudes were positively associated with their intention to share implicit, explicit, exploratory and exploitive knowledge. These results are valuable for organizational designing, planning and decision-making regarding their adoption of IOKSS in the health sector.


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