The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents' accounts

Satisfaction with service-related choices has not received much research attention, especially beyond medical/health-related decisions. This paper reports findings from an analysis of parents' accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition. It focuses particularly on factors and processes, which contribute to parents' satisfaction. This is particularly interesting given that sub-optimal outcomes or negative consequences are often experienced following a service-related choice being implemented. The data reported here were collected as part of a larger, longitudinal study (the Choice and Change project) of service users' experiences of choice-making, including the outcomes and consequences of those choices. Parents of disabled young people with degenerative conditions formed part of this sample. The accounts of 14 of these parents, collected over three interviews during a two and a half-year period, all of whom expressed satisfaction with the medium- to long-term outcomes of a service-related choice, were selected for specific analyses to understand what underlies satisfaction with service-related choices. Clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to 'trade off' the negative consequences of a choice. These included the considerable demands placed on parents' personal, financial and practical resources to operationalise a choice, and the emotional impact incurred by significant changes such as the loss of the carer role. The passage of time was important in allowing evidence of positive outcomes to emerge, psychological or emotional adjustments to be made, and for parents to develop trust in new service providers. The findings suggest that practitioners can have an important role in both practical and emotional support for parents' choice-making for, or with, their disabled son/daughter.     

Developing biographies: the experiences of children,young people and their parents of living with a long‐term condition

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long‐term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long‐term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long‐term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.     

Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study

Background: Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision‐focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients’ risk perception, and increase patient participation in the decision‐making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team. Materials and Methods: The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single‐center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding. Results: Thirty‐one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty‐three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding. Conclusion: The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.     

Advocating Mandatory Patient ‘Autonomy’ in Healthcare: Adverse Reactions and Side Effects

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and to the medical system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients’ decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research.     

Experiences and Perceptions of Sexuality and HIV/AIDS among Young People with Physical Disabilities in a South African Township: a Case Study

This study explored the experiences and perceptions of sexuality and HIV/AIDS among 15–24 year-old young people with physical disabilities in a South African Township characterised by high unemployment rates and lack of social services. Ten young people and ten parents participated in multiple individual interviews as well as in focus group discussions. The analysis of audio taped and transcribed responses identified common experiences and perceptions among participants. The results indicate that disabled young people have limited factual knowledge about sexuality and HIV/AIDS. The decisions and choices they make about sexual behaviour are not informed by what they know; rather, they are part of the whole life situation in Nyanga. Their need to be loved and accepted, need for job security and family life, were more important than practicing ‘safe sex’. Therefore, there is need for HIV/AIDS programme developers to take into account the experiences and perceptions of the target population.In this paper the phrases ‘young people with physical disabilities’ and disabled young people’ are used interchangeably.     

‘They think it's all up to the girls’: gender,risk and responsibility for contraception

Much research suggests that attitudes towards responsibility for use of contraception amongst young people are strongly gendered. However, decision making, if ‘decisions’ happen at all, is bound up with notions of hegemonic masculine and feminine roles as well as factors concerning relationship status. Data from two earlier qualitative studies were re-analysed with an emphasis on findings related to gender and responsibility for use of contraception. The first study investigated unintended conceptions amongst 16–20-year-old women. Interviews focused on knowledge and views about contraception, sex education and sexual health services. The second study involved focus groups with two groups of 14–18-year-old men to explore their views on sex education, sexual health and contraception. Almost all the young women said that young men viewed contraception as ‘not their job’. In contrast, the young men thought that responsibility should be shared. The key issue, however, related to relationship status, with decision-making being shared in long-term relationships. There are some gender differences in accounting for decisions about use of contraception, however the key issue revolves around relationship status.     

What choices should we be able to make about designer babies? A Citizens’ Jury of young people in South Wales

BACKGROUND: Young people will increasingly have the option of using new technologies for reproductive decision making but their voices are rarely heard in debates about acceptable public policy in this area. Capturing the views of young people about potentially esoteric topics, such as genetics, is difficult and methodologically challenging. DESIGN: A Citizens' Jury is a deliberative process that presents a question to a group of ordinary people, allows them to examine evidence given by expert witnesses and personal testimonies and arrive at a verdict. This Citizens' Jury explored designer babies in relation to inherited conditions, saviour siblings and sex selection with young people. PARTICIPANTS: Fourteen young people aged 16-19 in Wales. RESULTS: Acceptance of designer baby technology was purpose-specific; it was perceived by participants to be acceptable for preventing inherited conditions and to create a child to save a sibling, but was not recommended for sex selection. Jurors stated that permission should not depend on parents' age, although some measure of suitability should be assessed. Preventing potential parents from going abroad was considered impractical. These young people felt the Human Fertilisation and Embryology Authority should have members under 20 and that the term 'designer baby' was not useful. CONCLUSIONS: Perspectives on the acceptability of this technology were nuanced, and based on implicit value judgements about the extent of individual benefit derived. Young people have valuable and interesting contributions to make to the debate about genetics and reproductive decision making and a variety of innovative methods must be used to secure their involvement in decision-making processes.     

The burden of proof: The process of involving young people in research

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.     

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

Incorporation of patient values is a key element of patient-centered care, but consistent incorporation of patient values at the point of care is lacking. Shared decision making encourages incorporation of patient values in decision making, but associated tools often lack guidance on value assessment. In addition, focusing on patient values relating only to specific decisions misses an opportunity for a more holistic approach to value assessment that could impact other aspects of clinical encounters, including health care planning, communication, and stakeholder involvement. In this commentary, we propose a taxonomy of values underlying patient decision making and provide examples of how these impact provision of health care. The taxonomy describes four categories of patient values: global, decisional, situational, and external. Global values are personal values impacting decision making at a universal level and can include value traits and life priorities. Decisional values are the values traditionally conceptualized in decision making, including considerations such as efficacy, toxicity, quality of life, convenience, and cost. Situational values are values tied to a specific moment in time that modify patients’ existing global and decisional values. Finally, discussion of external values acknowledges that many patients consider values other than their own when making decisions. Recognizing the breadth of values impacting patient decision making has implications for both overall health care delivery and shared decision making because value assessments focusing only on decisional values may miss important patient considerations. This draft taxonomy highlights different values impacting decision making and facilitates a more complete value assessment at the point of care.     

Partnership‐based practice with young people: relational dimensions of partnership in a therapeutic setting

The recent literature concerning partnership between professionals and young people reveals important developments regarding the nature of partnership: from short‐term partnerships with young people's parents intended to improve decision‐making in the context of critical life decisions, to a growing interest in direct partnership between professionals and young people as a core principle of long‐term relationships. Although it is widely acknowledged among health and social service professionals that partnerships can have positive outcomes for young people, the concept and implementation of partnership remain vague. This article examines the meanings of partnership for people involved in a community youth centre for marginalised youth. Data were collected during the year 2011 using multiple‐methods including focus groups (with eight youth workers), participant observations (in assembly meetings and ‘partnership meetings’) and semi‐structured interviews (with 10 principal stakeholders, including youth, youth workers and the Center's founders). Data were analysed using principles of grounded theory to articulate partnership as an ongoing experience, combining both structural–technical and content‐experiential components. Our findings present partnership as existing simultaneously in the practice of decision‐making and in the realm of self‐experience and interpersonal relationships, and explore the relationship between both spheres. The findings also shed light on the importance of the specific characteristics of shared decision‐making (atmosphere, content and duration) in the creation of partnership. We discuss our findings in the light of possibilities for partnership‐based practice with marginalised youth.     

Patients' participation in decision‐making in the medical field – ‘projectification’ of patients in a neoliberal framed healthcare system

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective.     

A new model of medical decisions: exploring the limits of shared decision making.

This article proposes a model of medical decisions based on 2 fundamental characteristics of each decision--importance and certainty. Importance reflects a combination of objective and subjective factors; certainty is present if 1 intervention is superior and absent if 2 or more interventions are approximately equal. The proposed model uses these characteristics to predict who will have decisional priority for any given decision and shows how one class of decisions lends itself particularly well to shared decision making. Three other types of decisions are less well suited to a collaborative decision: 1) For major choices that have low certainty, patients should be encouraged to be the primary decision makers, with physician assistance as needed. 2) Most minor decisions that have high certainty are expected to be made by physicians. 3) Major decisions that have high certainty are likely to cause serious conflict when patients and physicians disagree.     

A survey of the decision-making needs of Canadians faced with complex health decisions

Objective To describe the decision‐making needs of Canadians when faced with ‘complex’ health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health‐care system depends on support for personal knowledge and decision‐making, there has been no systematic investigation of the Canadian population's decision‐making needs. Design Cross‐sectional telephone survey using random digit dialling. Participants National sample of 635 adults over 18 years of age, living in Canada. Results Forty‐two percentage of eligible contacts participated. Sixty‐five percent of contacts reported making ‘complex’ health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty‐nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision‐making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. ‘Essential’ criteria for judging satisfactory decision‐making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. Conclusions Canadians, particularly women, face difficult decisions and need support and information from credible sources.     

The role of perceived benefits and costs in patients’ medical decisions

Background Many decisions can be understood in terms of actors’ valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence. Methods In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health‐care provider about during the past 2 years. Participants were 2575 English‐speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence. Results Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision. Conclusion The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients’ confidence in their decision.     

Married men's first time experiences of early childbearing and their role in sexual and reproductive decision making: a qualitative study from rural Vietnam

Male partners' involvement in women's sexual and reproductive health has been increasingly emphasised in international health. A qualitative approach with open-ended qualitative interviews was used to explore young, married men's first time experiences of early childbearing, their sexual and reproductive decision making and the meanings they make of their role as husbands and fathers. The results offer a nuanced picture of the men's vulnerability in becoming young fathers and having to assume their role as family decision-makers, while still being inexperienced in matters related to the health of their wives and newborn child. Constraints to gender equality and traditional norms and values continue to pose barriers to both young men and women making independent decisions in relation to marriage and childbearing. Men's involvement is necessary in healthcare programmes designed to improve women's sexual and reproductive health and the health of the newborn. Young, first-time fathers, in particular, need support and empowerment.     

Decision aid tools to support women's decision making in pregnancy and birth: a systematic review and meta-analysis

Support for a model of shared medical decision making, where women and their care providers discuss risks and benefits of their different options, reveal their preferences, and jointly make a decision, is a growing expectation in obstetric care. The objective of this study was to conduct a systematic review and meta-analysis of randomized controlled trials evaluating the efficacy of different decision aid tools compared to regular care for women facing several options in the specific field of obstetric care. We included published studies about interventions designed to aid mothers' decision making and provide information about obstetrical treatment or screening options. Following a search of electronic databases for articles published in English and French from 1994 to 2010, we found ten studies that met the inclusion criteria. In this systematic review and meta-analysis we found that all decision aid tools, except for Decision Trees, facilitated significant increases in knowledge. The Computer-based Information Tool, the Decision Analysis Tools, Individual Counseling and Group Counseling intervention presented significant results in reducing anxiety levels. The Decision Analysis Tools and the Computer-based Information tool were associated with a reduction in levels of decisional conflict. The Decision Analysis Tool was the only tool that presented evidence of an impact on the final choice and final outcome. Decision aid tools can assist health professionals to provide information and counseling about choices during pregnancy and support women in shared decision making. The choice of a specific tool should depend on resources available to support their use as well as the specific decisions being faced by women, their health care setting and providers.     

Clinical decision‐making in the context of chronic illness

This paper develops a framework to compare clinical decision making in relation to chronic and acute medical conditions. Much of the literature on patient‐physician decision making has focused on acute and often life‐threatening medical situations in which the patient is highly dependent upon the expertise of the physician in providing the therapeutic options. Decision making is often constrained and driven by the overwhelming impact of the acute medical problem on all aspects of the individual’s life. With chronic conditions, patients are increasingly knowledgeable, not only about their medical conditions, but also about traditional, complementary, and alternative therapeutic options. They must make multiple and repetitive decisions, with variable outcomes, about how they will live with their chronic condition. Consequently, they often know more than attending treatment personnel about their own situations, including symptoms, responses to previous treatment, and lifestyle preferences. This paper compares the nature of the illness, the characteristics of the decisions themselves, the role of the patient, the decision‐making relationship, and the decision‐making environment in acute and chronic illnesses. The author argues for a different understanding of the decision‐making relationships and processes characteristic in chronic conditions that take into account the role of trade‐offs between medical regimens and lifestyle choices in shaping both the process and outcomes of clinical decision‐making. The paper addresses the concerns of a range of professional providers and consumers.     

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

BACKGROUND: Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. AIMS: We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. METHOD: The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi-structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. RESULTS: All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as 'patient-led'. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. CONCLUSIONS: Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non-alignment of patient preferences with the actual model of decision making if this occurs.