Breaking the sound barrier: exploring parents’ decision-making process of cochlear implants for their children

ObjectiveTo understand the dynamic experiences of parents undergoing the decision-making process regarding cochlear implants for their child(ren).MethodsThirty-three parents of d/Deaf children participated in semi-structured interviews. Interviews were digitally recorded, transcribed, and coded using iterative and thematic coding.ResultsThe results from this study reveal four salient topics related to parents’ decision-making process regarding cochlear implantation: 1) factors parents considered when making the decision to get the cochlear implant for their child (e.g., desire to acculturate child into one community), 2) the extent to which parents’ communities influence their decision-making (e.g., norms), 3) information sources parents seek and value when decision-making (e.g., parents value other parent's experiences the most compared to medical or online sources), and 4) personal experiences with stigma affecting their decision to not get the cochlear implant for their child.ConclusionThis study provides insights into values and perspectives that can be utilized to improve informed decision-making, when making risky medical decisions with long-term implications.Practical implicationsWith thorough information provisions, delineation of addressing parents’ concerns and encompassing all aspects of the decision (i.e., medical, social and cultural), health professional teams could reduce the uncertainty and anxiety for parents in this decision-making process for cochlear implantation.     

Making shared decisions in relation to planned caesarean sections: What are we up to?

ObjectiveTo map the literature in relation to shared decision making (SDM) for planned caesarean section (CS), particularly women’s experiences in receiving the information they need to make informed decisions, their knowledge of the risks and benefits of CS, the experiences and attitudes of clinicians in relation to SDM, and interventions that support women to make informed decisions.MethodsUsing a scoping review methodology, quantitative and qualitative evidence was systematically considered. To identify studies, PubMed, Maternity and Infant Care, MEDLINE, and Web of Science were searched for the period from 2008 to 2018.Results34 studies were included, with 9750 women and 3313 clinicians. Overall women reported limited SDM, and many did not have the information required to make informed decisions. Clinicians generally agreed with SDM, while recognising it often does not occur. Decision aids and educational interventions were viewed positively by women.ConclusionMany women were not actively involved in decision-making. Decision aids show promise as a SDM-enhancing tool. Studies that included clinicians suggest uncertainty regarding SDM, although willingness to engage.Practice implications: Moving from clinician-led decision-making to SDM for CS has potential to improve patient experiences, however this will require considerable clinician training, and implementation of SDM interventions.     

Initiating end-of-life decisions with parents of infants receiving neonatal intensive care

ObjectiveTo investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.MethodFormal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher’s exact test.ResultsWhen parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use ‘recommendations’ or ‘single-option’ choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).ConclusionAligning parents to the trajectory of the news about their baby’s poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.Practice implicationsExplicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.     

Treatment decision-making in ductal carcinoma in situ: A mixed methods systematic review of women’s experiences and information needs

ObjectiveDecision-making in ductal carcinoma in situ (DCIS) is complex due to the heterogeneity of the disease. This study aimed to understand women’s experience of making treatment decisions for DCIS, their information and support needs, and factors that influenced decisions.MethodsWe searched six electronic databases, conference proceedings, and key authors. Two reviewers independently applied inclusion and quality criteria, and extracted findings. Thematic analysis was used to combine and summarise findings.ResultsWe identified six themes and 28 subthemes from 18 studies. Women with DCIS have knowledge deficits about DCIS, experience anxiety related to information given at diagnosis and the complexity of decision-making, and have misconceptions regarding risks and outcomes of treatment. Women’s decisions are influenced by their understanding of risk, the clinical features of their DCIS, and the benefits and harms of treatment options. Women are dissatisfied with the decisional support available.ConclusionsInformed and shared decision-making in this complex decision setting requires clear communication of information specific to DCIS and individual’s, as well as decision support for patients and clinicians.Practice implicationsThis approach would educate patients and clinicians, and assist clinicians in supporting patients to an evidence-based treatment plan that aligns with individual values and pReferences     

Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

ObjectivesSystematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.MethodsElectronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised.ResultsSearches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement.ConclusionThe highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making.Practice ImplicationsComplex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant.     

Parental role in decision-making for pediatric surgery: Perceptions of involvement in consultations for tonsillectomy

ObjectiveParental role in decision-making has implications for quality of care. We describe roles of parent participation in decision-making for tonsillectomy.MethodsParents reported preferred role in decision-making before consultations for tonsillectomy and the role they experienced after their consult. Parents completed questionnaires, including items evaluating clinician/parent communication. Clinicians rated perception of parents’ preferred role in decision-making. Congruence between parent and clinician responses was evaluated via kappa analysis. Logistic regression identified associations between decision-making roles and socioemotional and communication factors.ResultsConsults between 63 parents and 8 otolaryngologists were analyzed.There was inadequate agreement between clinician and parent ratings of preferred roles (37%, p = 0.6, 95% CI [-0.09, 0.001]). Parents perceived greater involvement when clinicians discussed reasons to have (OR = 4.3, p = 0.03) or not have (OR = 4.1, p = 0.005) surgery. Parents perceived less involvement when clinicians used jargon (OR = 0.1, p = 0.03), and when parents trusted clinicians (OR = 0.4, p = 0.049), or experienced greater decisional conflict (OR = 0.9, p = 0.03).ConclusionsParents and clinicians perceived parental preference for decision-making involvement differently during consultations for tonsillectomy. Clinician information-sharing, jargon use, and parent trust in clinician predicted extent of perceived engagement.Practice implicationsFindings may enhance understanding of strategies to effectively communicate and engage parents in shared decision-making for pediatric surgical care.     

Patients’ preferred and perceived decision-making roles,and observed patient involvement in videotaped encounters with medical specialists

ObjectiveTo assess how patients prefer and perceive medical decision making, which factors are associated with their preferred and perceived decision-making roles, and whether observed involvement reflects patients’ perceived role.MethodsWe asked 781 patients visiting a medical specialist from 18 different disciplines to indicate their preferred and perceived decision-making roles. Patient involvement in videotaped consultations was assessed with the OPTION5 instrument.ResultsMost patients preferred and perceived decision making as shared (SDM; 58% and 43%, respectively), followed by paternalistic (26% and 38%), and informative (16% and 15%). A large minority (n = 103, 21%) of patients preferring shared or informative decision making (n = 482) experienced paternalistic decision making. Mean (SD) OPTION5 scores were highest in consultations which patients perceived as informative (26.0 (19.7)), followed by shared (19.1 (17.2)) and lowest in paternalistic decision making (11.8 (13.4) p < 0.001).ConclusionsMost patients want to be involved in decision making. Patients perceive that the physician makes the decision more often than they prefer, and perceive more involvement in the decision than objective assessment by an independent researcher shows.Practice implicationsA clearer understanding of patients’ medical decision-making experiences is needed to optimize physician SDM training programmes and patient awareness campaigns.     

Reference frame and emotions may contribute to discrepancies in patient and clinician risk estimates in Long QT syndrome

ObjectivePatients and clinicians need to have similar understandings of cardiac risk, so patients can make informed decisions. The aim of this study was to assess the concordance of risk estimates between Long-QT-Syndrome (LQTS) patients and an experienced clinician.MethodsThis cross-sectional study included 86 LQTS patients recruited from a clinical registry. Participants completed two questions on their risk of cardiac arrest; likelihood (1=very-unlikely to 5=very-likely), and chance (%), and an experienced clinician computed the same based on risk factors.Results30% and 55% of patients had concordant perceptions with the clinician estimate on the chance and likelihood questions respectively. The patients who overestimated their risk (%) had significantly greater emotional responses and concerns about their LQTS. 22 (29%) patients reported a risk of 50% or greater, in contrast to the clinician’s risk estimates not exceeding 30%.ConclusionMany LQTS patients had discordant risk perceptions to the clinician’s. Patients and clinicians may have different frames of reference, and patients’ estimates are linked with emotions.Practical implicationsClinicians need to take into account LQTS patients’ different frame of reference when discussing risk information. This will support shared decision making.     

Responsibility,culpability, and parental views on genomic testing for seriously ill children

PurposeWe describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents’ perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice.MethodsLongitudinal, semistructured interviews were conducted with parents of pediatric cancer patients who underwent exome sequencing (ES) as a part of the BASIC3 study. Interviews were conducted at baseline, one to eight months after results disclosure, and approximately one year after disclosure. Using thematic qualitative analysis, parent interviews were coded with both inductive and deductive approaches.ResultsBefore receiving genomic information, parents indicated that they saw ES as something responsible parents would agree to if their child had cancer. Some parents talked about the possibility of sequencing affecting feelings of culpability for their child’s cancer, worrying that they passed on a cancer-causing gene or made parenting decisions that caused the disease. However, after receiving their child’s ES results many reported feeling relieved of guilt and worry, and felt they had fulfilled parental duties by agreeing to ES for their child.ConclusionThese results reveal a layer of meaning that parents associate with GS that may inform clinicians’ approach to care.     

Shared decision-making – transferring research into practice: The Analytic Hierarchy Process (AHP)

ObjectiveTo illustrate how the Analytic Hierarchy Process (AHP) can be used to promote shared decision-making and enhance clinician–patient communication.MethodsTutorial review.ResultsThe AHP promotes shared decision-making by creating a framework that is used to define the decision, summarize the information available, prioritize information needs, elicit preferences and values, and foster meaningful communication among decision stakeholders.ConclusionsThe AHP and related multi-criteria methods have the potential for improving the quality of clinical decisions and overcoming current barriers to implementing shared decision-making in busy clinical settings. Further research is needed to determine the best way to implement these tools and to determine their effectiveness.Practice implicationsMany clinical decisions involve preference-based trade-offs between competing risks and benefits. The AHP is a well-developed method that provides a practical approach for improving patient–provider communication, clinical decision-making, and the quality of patient care in these situations.     

Disease management, coping, and functional disability in pediatric sickle cell disease

BackgroundYouth with sickle cell disease (SCD) experience chronic symptoms that significantly interfere with physical, academic, and social-emotional functioning. Thus, to effectively manage SCD, youth and caregivers must work collaboratively to ensure optimal functioning. The goal of the current study was to examine the level of involvement in disease management tasks for youth with SCD and their caregivers. The study also examined the relationship between involvement in disease management tasks, daily functioning, and coping skills. The study utilized collaborative care and disease management theoretical frameworks.MethodsYouth and caregivers participated in the study during an annual research and education day event. Forty-seven patients with SCD aged 6 to 18 years and their caregivers completed questionnaires examining level of involvement in disease management tasks, youth functional disability, and youth coping strategies. Caregivers also completed a demographic and medical history form.ResultsParents and youth agreed that parents were significantly more involved in disease management tasks than youth, although level of involvement varied by task. Decreased parent involvement was related to greater coping strategies used by patients, including massage, prayer, and positive thinking. Higher functional disability (lower functioning) was related to greater parent involvement in disease management tasks, suggesting that greater impairment may encourage increased parent involvement.ConclusionsHealth professionals working with families of youth with SCD should discuss with parents and youth how disease management tasks and roles will be shared and transferred during adolescence. Parents and youth may also benefit from a discussion of these issues within their own families.     

The impact of shared decision making on time consumption and clinical decisions. A prospective cohort study

ObjectiveConcerns of increased time consumption and of the impact on clinical decisions may restrain doctors from shared decision making (SDM). This paper evaluates consultation length and decisions made when using an in-consult patient decision aid (PtDA).MethodsThis prospective cohort study compared an unexposed cohort with a cohort exposed to SDM and a PtDA in two preference-sensitive decision situations: invasive lung cancer diagnostics and adjuvant treatment for early breast cancer. Outcome measures were consultation length and decisions made.ResultsThe study included 261 consultations, 115 were in the SDM-exposed cohort. Consultations were inconsiderably longer in the SDM cohort; 2 min, 11 s (p = 0.2217) for lung cancer diagnostics and 3 min, 57 s (p = 0.1128) for adjuvant breast cancer treatment. In lung cancer diagnostics, consultation length became more uniform and decisions tended to become conservative after introduction of SDM. For adjuvant breast cancer, slightly more patients in the SDM cohort chose to decline treatment.ConclusionShared decision making did not take significantly longer time and led to slightly more conservative decisions.Practice implicationsSDM may be implemented without considerable impact on consultation length. The impact on clinical decisions depends mainly on the clinical situation.     

Parents’ information needs,treatment concerns,and psychological well-being when their child is diagnosed with adolescent idiopathic scoliosis: A systematic review

ObjectiveWe systematically reviewed the experiences of parents who have a child with adolescent idiopathic scoliosis in order to understand their needs and concerns related to their child’s healthcare, and assist health professionals in supporting parents of this paediatric patient group.MethodsA systematic search strategy identified eighteen relevant studies published between 2000 and 2020. Quality was assessed using the Mixed Methods Appraisal Tool and the literature was narratively synthesised.ResultsThree main themes were evident across the literature including information needs, treatment concerns, and psychological well-being. Studies predominantly focused on the surgical treatment of scoliosis.ConclusionParents face challenges such as acquiring appropriate knowledge about scoliosis to participate in healthcare decisions and coping with their child undergoing invasive spinal surgery. Throughout this time, their psychological well-being can be negatively impacted. Considering parents’ experiences and support needs throughout this anxiety-provoking time is an important step in delivering family-centered care and promoting better outcomes for paediatric patients.Practice ImplicationsProviding parents with appropriate resources and addressing concerns around surgical complications, postoperative pain, and how they can best support their child before and after surgery, may alleviate some of the emotional burden that parents experience.     

Changing hospitals,choosing chemotherapy and deciding you’ve made the right choice: Understanding the role of online support groups in different health decision-making activities

ObjectiveTo investigate the ways in which people use online support groups (OSGs) in relation to their health decision-making and to identify the key features of the resource that support those activities.MethodEighteen participants who used OSGs for a range of health conditions participated in qualitative study in which they were interviewed about their experiences of using OSGs in relation to decision-making. Exploration of their experiences was supported by discussion of illustrative quotes.ResultsAcross the health conditions OSGs supported two main decision-making activities: (i) prompting decision making and (ii) evaluating and confirming decisions already made. Depending on the activity, participants valued information about the process, the experience and the outcome of patient narratives. The importance of forum interactivity was highlighted in relation to advice-seeking and the selection of relevant personal experiences.ConclusionPeople use OSGs in different ways to support their health related decision-making valuing the different content types of the narratives and the interactivity provided by the resource.Practice implicationsEngaging with OSGs helps people in a number of different ways in relation to decision-making. However, it only forms one part of people’s decision-making strategies and appropriate resources should be signposted where possible.     

Medical treatment decision-making in rural cancer patients: A qualitative systematic review and meta-synthesis

ObjectiveRural cancer patients have unique care needs which may impact upon treatment decision-making. Our aim was to conduct a qualitative systematic review and meta-synthesis to understand their perspectives and experiences of making treatment decisions.MethodsA systematic search of MEDLINE, PsycINFO, CINAHL and RURAL was conducted for qualitative studies in rural cancer patients regarding treatment decision-making. Articles were screened for relevance, and data from the included articles were extracted and analysed using meta-thematic synthesis.ResultsTwelve studies were included, with 4 themes and 9 subthemes identified. Many studies reported patients were not given a choice regarding their treatment. Choice, if given, was influenced by personal factors such as finances, proximity to social supports, convenience, and their personal values. Patients were also influenced by the opinions of others and cultural norms. Finally, it was reported that patients made choices in the context of seeking the best possible medical care and the patient-clinician relationship.ConclusionsIn the rural context, there are universal and unique factors that influence the treatment decisions of cancer patients.Practical implicationsOur findings are an important consideration for clinicians when engaging in shared decision-making, as well as for policymakers, to understand and accommodate the unique rural perspective.     

The experiences of shared decision-making of women who had an induction of labour

ObjectivesThe importance of shared decision-making (SDM) in relation to induction of labour (IOL) is recognised, little is known about women’s experiences of and satisfaction with decision-making and how this can be improved. The aim of this study was to 1) gain insight into women’s experiences of SDM in relation to IOL, 2) understand the factors associated with satisfaction versus dissatisfaction during SDM, and 3) identify recommendations for service improvement.MethodsQualitative semi-structured telephone interviews were conducted with 32 women who had a recent IOL at one of eight public hospitals in Sydney, Australia. An inductive approach to coding and categorisation of themes was used.ResultsWhile women reported varied experiences with SDM, many reported not feeling that they had a choice about IOL, not being presented with the risks and benefits of different birth options, and receiving insufficient information about the IOL process and methods. Satisfaction versus dissatisfaction with SDM appeared more closely related to a woman’s willingness to have an IOL and their willingness to defer decision-making, rather than the process of SDM. Recommendations for improvement included improved SDM practices, access to guidelines and continuity of care.ConclusionThere is a need to improve SDM processes around IOL.Practice implicationsParticular areas for improvement include more comprehensive discussions surrounding the pros and cons of different birth methods and the IOL process. Decision aids and clinician training may assist with SDM.     

Healthcare professionals’ assertions and women’s responses during labour: A conversation analytic study of data from One born every minute

ObjectiveCommunication during labour is consequential for women’s experience yet analyses of situated labour-ward interaction are rare. This study demonstrates the value of explicating the interactional practices used to initiate ‘decisions’ during labour.MethodsInteractions between 26 labouring women, their birth partners and HCPs were transcribed from the British television programme, One Born Every Minute. Conversation analysis was used to examine how decisions were initiated and accomplished in interaction.FindingsHCPs initiate decision-making using interactional practices that vary the ‘optionality’ afforded labouring women in the responsive turn. Our focus here is on the minimisation of optionality through ‘assertions’. An ‘assertive’ turn-design (e.g. ‘we need to…’) conveys strong expectation of agreement. HCPs assert decisions in contexts of risk but also in contexts of routine activities. Labouring women tend to acquiesce to assertions.ConclusionThe expectation of agreement set up by an assertive initiating turn can reduce women’s opportunities to participate in shared decision-making (SDM).Practice implicationsWhen decisions are asserted by HCPs there is a possible dissonance between the tenets of SDM in British health policy and what occurs in situ. This highlights an educational need for HCPs in how best to afford labouring women more optionality, particularly in low-risk contexts.     

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

ObjectiveSurrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed.MethodsThis study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).ResultsDecisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact.ConclusionFamily surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.Practice implicationsThis review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.