Active Role In Decision Research Articles

How well are we meeting haematological cancer survivors’ preferences for involvement in treatment decision making?

ObjectiveThis study aimed to examine preferred and perceived roles of haematological cancer survivors in treatment decision making. MethodsParticipants were within three years of diagnosis and registered with a cancer registry in one Australian state. 732 eligible survivors were invited to complete a paper and pencil survey. Results268 survivors completed the survey (37% response rate). The majority of participants (46%) preferred a passive role in decision making. Thirty percent of participants preferred to make the decision in collaboration with the doctor, whereas 26% preferred an active role in decision making. Just over half of respondents (56%) reported an exact match between their preferred and perceived roles. Where discordance between preferred and perceived roles were identified, survivors were more likely to report having been more passively than actively involved compared to their preferred roles. ConclusionThere is considerable variation in haematological cancer survivors’ preferred and perceived roles in treatment decision making. Practice implicationsThis study highlights the need to improve clinical communication to ensure that patient experiences align with their preferences for involvement in treatment decision making.

Participación ciudadana en salud: formación y toma de decisiones compartida. Informe SESPAS 2012

In recent decades, citizen's participation has become increasingly important in the field of public health, with the new role of the patient as an active agent, manager and producer of his or her own health, and the paradigm of patient-centered care. These changes have represented some of the most important milestones in the continuous improvement of healthcare. The involvement of patients is a new way of understanding the relationship between patients, health professionals and health systems, not only in terms of knowledge management and patients’ control of their own health, individually or collectively, but also in terms of the influence that patients may have in health policy planning. Increased life expectancy and the consequent rise in the prevalence of chronic diseases, which already account for 80% of primary care consultations, is one of the key factors changing the role of patients. The place traditionally occupied by professional consultations given any symptoms or signs of alarm is beginning to be occupied by self-care and information and health education resources within the reach of patients and citizens. Internet access is an inexhaustible source of health information resources aimed at patients and provides participation tools. Social networks are places to exchange information and practical advice among patients, families and health professionals. Patients may be experts in their own illnesses and may thus take a more active role in decisions about their health, such as in shared decision making, as part of initiatives, and as part of evaluation of public health activities and health services.

Behavioral involvement and preference for information among male and females with cardiac disease

The aim of this pilot study was to explore and compare preferences for involvement and preferences for information among men and women who had suffered from cardiac disease. A convenience sample of 79 respondents (47 men and 32 women) was recruited from The National Association of Heart and Lung Patients in Sweden at ten local meeting places in different areas. Krantz Health Opinion Survey, KHOS, a 16-item self-rating questionnaire, was used to measure patients’ desire for involvement in healthcare. The results indicate that patients’ information preferences and behavioural preferences are not very high though the total score in KHOS was 5.47. A difference between the genders was also found, seen as higher scores in females than males; 5.93 vs 4.44, p = 0.032, indicating that women prefer a more active role in decision making than men do. The main practical conclusion drawn from this empirical study is that patients are still not as active in seeking information or in behavioural involvement as is desirable.

A qualitative systematic review of internal and external influences on shared decision-making in all health care settings.

Review question/objective The objective of this review is to identify and synthesize the best available evidence related to the meaningfulness of internal and external influences on shared-decision making for adult patients and health care providers in all health care settings. The specific questions to be answered are: •What are the internal and external influences on shared decision making from the perspective of adult patients in all health care settings? •What are the internal and external influences on shared decision making from the perspective of health care providers caring for adult patients in all health care settings? Inclusion criteria Types of participants This review will consider studies that include adult patients (18 year of age or older) of all races and ethnicities regardless of health status or condition and health care providers, including but not limited to nurses, advanced practice nurses, and physicians, caring for such patients who are involved in a shared decision-making process. Phenomena of interest This review will consider studies that investigate the internal and external influences on shared decision-making including but not limited to communication, trust, mutual respect, honesty, time, continuity, consistency, commitment, autonomy, empowerment, age, education, socio-economic status, culture, and diagnosis for adult patients and health care providers in all health care settings, where shared decision-making is defined as a joint process characterized by sharing and negotiating between the patient and health care provider that results in a mutually agreed upon decision. Types of studies This review will consider interpretive studies that draw on the internal and external influences on shared decision making on adult patients and health care providers including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

Medicaid Personal Care Services and caregivers' reports of children's health: the dynamics of a relationship.

To investigate the relationship between Medicaid Personal Care Services (PCS) and caregivers' reports of activity (activities of daily living [ADL]) limitations for children with chronic health problems. Primary data collected in 2008 and 2009. A state Medicaid program was the setting. The focus was children receiving Medicaid PCS. Medicaid case managers assessed children to determine their need for PCS, using information provided by the child or informal caregivers. Two thousand seven hundred assessments were provided to researchers directly from case managers. Medical conditions and impairments explained 58 percent of the variance in the child's activity limitations. Activity limitations and problem behaviors explained 28 percent of the variance in PCS hours authorized. Which case manager completed the assessment also played a substantial role in determining hours of care. Caregivers' reports of the severity of a child's activity limitations effectively summarize the effects of conditions and impairments on the child's ADL performance and have a significant impact on the level of services provided. Assessors often respond differently to children's characteristics and circumstances as they move from assessment to decisions concerning care provision. Our results imply that the provision of appropriate services may be enhanced when both case managers and caregivers play an active role in decisions concerning care provision.

The relationship between maternal parenting style, female adolescent decision making, and contraceptive use

AbstractPurpose: To examine the relationship between maternal parenting style, female adolescent decision making, and contraceptive behavior in multiethnic, 14‐ to 17‐year‐old Hawaii residents.Data sources: This was a descriptive cross‐sectional survey design using a convenience sample of 112 female adolescents 14–17 years of age who came for health care from four clinics on the island of Maui and the Big Island of Hawaii. Along with a brief demographic questionnaire, maternal parenting style was measured by the Parental Control Scale, decision making was measured by the Flinders Adolescent Decision Making Questionnaire, and sexual activity and contraception use was measured by a non‐normed Sexual History and Contraceptive Use Questionnaire. Descriptive statistics, logistic regression, and correlations were used to analyze associations and correlations between age, maternal parenting style, decision self‐esteem, decision coping (vigilant and maladaptive), and contraceptive use for sexually active female adolescents.Conclusions: No significant associations or correlations were found between age, maternal parenting style, decision self‐esteem, decision coping (vigilant and maladaptive), and contraceptive use. There were significant positive correlations (p < .05) between maternal parenting style, age, and decision coping‐complacency, suggesting that maternal parenting styles are more controlling and that decision coping‐complacency increases as the adolescent ages, leading the adolescents to take a less active role in decision making.

Consumer use of the internet for medicines information

Abstract Objective To explore consumer opinion of the internet as a source of medicines information, the reasons consumers use this information, and the impact of this information on their use of medicines. Method Focus groups (n=6) were conducted in metropolitan Sydney, Australia during March to May 2003 with consumers (n=46) who had used the internet for medicines information. Key findings Although participants expressed some concerns about the quality of internet-based medicines information (IBMI), the convenience of access to this information outweighed these reservations. Attitudes were thus positive overall. Participants used IBMI when preparing for doctors' visits, for second opinions and additional information, for information on current issues, when deciding whether to use a medicine, for comparative information on brands and generics, and when written information was not supplied by health professionals. Most participants felt empowered by the information they found and used it to play a more active role in decision making about their therapy. Conclusion This study describes various issues associated with consumer use of IBMI and highlights the possible role of pharmacists to support their patients' efforts to access and interpret medicines information.

Elderly patients' experiences of care in the emergency department: a systematic review.

Review Questions/Objectives This systematic review seeks to synthesise the evidence on the experiences of care received by elderly patients in the emergency department in the hospital setting. Review questions The specific review questions to be addressed are: What is the evidence on elderly patients’ experiences of the overall care received in the emergency department? What is the evidence on elderly patients’ experiences of the nursing care received in the emergency department? What is the evidence on the needs identified by elderly patients in the emergency department? Inclusion Criteria Types of participants The review will consider studies that include male and female patients of all ethnic groups who are 65 years old and above, and admitted into the emergency department with urgent as well as non-urgent health-related issues. Phenomena of interest The review will consider studies that include the following phenomena of interest: elderly patients’ experiences of care at an emergency department. Context The review will consider studies that will include contexts such as the emergency department in the acute care hospital settings in all countries. Outcomes of Interest The outcomes of interest include but are not restricted to the following: Experiences of overall care received by elderly patients in the emergency department. Experiences of nursing care received by elderly patients in the emergency department. Identified needs of elderly patients when receiving care in the emergency department.

Men’s and carers’ experiences of care for prostate cancer: a narrative literature review

To review studies of patients' and carers' experience of prostate cancer care. Narrative literature review. Search strategies were developed for the following databases: MEDLINE (1966-2006), EMBASE (1980-2006), CINAHL (1982-2006) and PsycINFO (1987-2006). A search of SIGLE (System for Information on Grey Literature in Europe) was also undertaken. Experience was defined as patients' and carers' reports of how care was organized and delivered to meet their needs. A narrative summary of the included papers was undertaken. A total of 90 relevant studies were identified. Most studies reported on experiences of screening, diagnosis, the treatment decision, treatment and post-initial treatment. Few studies reported on experiences of the stages of referral, testing, and further treatment and palliative care, and no studies reported on monitoring or terminal care. Although some phases of care have not been investigated in detail, there is evidence that: (i) many patients have a low level of knowledge of prostate cancer; (ii) patients with prostate cancer and their carers need information throughout the care pathway to enable them to understand the diagnosis, treatment options, self-care and support available; and (iii) increasing patient knowledge and understanding of prostate cancer (e.g. through interventions) are often associated with a more active role in decision making (e.g. screening, treatment decision).

A computer-tailored intervention to promote informed decision making for prostate cancer screening among African American men.

African American men experience a disproportionate burden of prostate cancer (CaP) morbidity and mortality. National screening guidelines advise men to make individualized screening decisions through a process termed informed decision making (IDM). In this pilot study, a computer-tailored decision-aid designed to promote IDM was evaluated using a pre-/posttest design. African American men aged 40 years and older were recruited from a variety of community settings (n = 108). At pretest, 43% of men reported having made a screening decision; at posttest 47% reported this to be the case (p = .39). Significant improvements were observed between pre- and posttest on scores of knowledge, decision self-efficacy, and decisional conflict. Men were also more likely to want an active role in decision making after using the tool. These results suggest that use of a computer-tailored decision aid is a promising strategy to promote IDM for CaP screening among African American men.

4 themes described the experiences of patients before, during, and immediately after awake craniotomy

A Palese Prof A Palese, Udine University, Udine, Italy; alvisa.palese@uniud.it How do patients describe their experiences before, during, and immediately after awake craniotomy? Qualitative study using a phenomenological approach. Neurosurgical...

Victim Participation and Therapeutic Jurisprudence

Research with crime victims suggests that victims seek participation and recognition in the justice system (Erez, 1999; Kilchling, 1995; Shapland, Willmore, & Duff, 1985; Wemmers, 1996). However, victim participation in the criminal justice system is a point of debate among scholars (Ashworth, 1993; Erez, 1999). Participation can take various forms: it can mean an active decision-making role or merely consultation and consideration (Edwards, 2004; Wemmers & Cyr, 2004). In addition, there is the question of how victims are affected by their participation. While victims in Canada are currently by and large excluded from the criminal justice process, their being outside the system does (to some extent) shelter them from the offender. This raises the question: when is participation helpful or therapeutic for victims and when is it harmful or antitherapeutic? Based on interviews with public prosecutors and victim support workers in the province of Quebec, this study explores the similarities and differences in the perceptions of these two key groups of professionals. Both prosecutors and victim support workers can be considered victims' allies in an adversarial justice system and the study reveals important similarities as well as differences between the two groups with respect to their perceptions of victim participation.

Using Mixed Methods for Evaluating an Integrative Approach to Cancer Care: A Case Study

To evaluate the impact of participating in an integrative cancer care program at the Centre for Integrated Healing in Vancouver, British Columbia, on patients' lifestyle, quality of life, and overall well-being. A mixed-methods case study with a pre- and posttest design. No control group was utilized. All new patients starting at the Centre for Integrated Healing between May and September of 2004 were invited to join the study. Forty-six of 77 new patients agreed to participate. Quantitative data measuring quality of life, social support, anxiety and depression, locus of control, and hope were assessed at baseline (pre-program start) and at 6 weeks and 5 months from the start of the program. Qualitative data in the form of focus groups and interviews were collected midway through the follow-up period to further explore program impacts. No statistically significant improvements or declines were noted on the quantitative measures between baseline and the 5-month follow-up point. The qualitative findings revealed a theme of patients' active engagement in their cancer care involving empowered decision making and creating personal change. Facilitators of active patient engagement in their own care from the integrative program included healing partnerships with practitioners, information and resources, managing the integration of complementary and conventional therapies, emotional support, and a sense of hope. This case study was a first attempt at documenting the impact of an integrative cancer care program at the Centre for Integrated Healing. Study limitations included a small sample size, which limited power to detect quantitative changes on the questionnaires and a lack of a control group. Qualitative findings indicated that patients found value in the "person-oriented" holistic approach to care, which encouraged patients to take an active role in decision making and self-care. The use of a mixed-methods research design proved to be an effective approach to not only evaluating outcomes but also examining process issues of the experience. Additional research is greatly needed to better understand potential impacts of integrative approaches to cancer care.

Usefulness of the Threatening Medical Situations Inventory in individuals considering genetic testing for cancer risk

Objective To assess the psychometric properties of the Threatening Medical Situations Inventory (TMSI) in a community sample (Study 1), and to examine its usefulness in individuals with a strong family history of cancer (Study 2). Methods Study 1 participants ( N = 276) completed 2 online surveys, 14 days apart. Study 2 participants ( N = 311) completed 2 questionnaires, 6 months apart. Results Both studies revealed the inventory was psychometrically sound, although some concerns were raised about the factor structure. High monitors in Study 1 reported desiring more health-related information and an active role in medical decision-making. High monitors in Study 2 had the greatest knowledge increase when they received a detailed decision aid, compared to a brief pamphlet. Conclusion The TMSI is appropriate for use in both community and clinical samples. High monitors in the general community are more likely to prefer receiving as much health-related information as possible and desire an active role in decision-making about their health. Practice implications Familial cancer clinic patients may benefit from tailoring the amount of information they receive to their coping style, such that patients who are vigilant information-seekers may benefit most from receiving more detailed information about genetic testing.

Patient Education on Prostate Cancer Screening and Involvement in Decision Making

Many clinicians lack resources to engage patients in shared decision making for prostate cancer screening. We sought to evaluate whether previsit educational decision aids facilitate shared decision making. This randomized controlled study compared a Web-based and a paper-based decision aid with no previsit education. Men aged 50 to 70 years undergoing a health maintenance examination at a large family practice were enrolled. The primary outcome was patient-reported level of control over the decision to be screened. Secondary outcomes included frequency of screening, patient knowledge, decisional conflict, and time spent discussing screening. A total of 497 men participated (75 control, 196 brochure, 226 Web site). Patients exposed to either aid were no more likely than control patients to report a collaborative decision: 36% of patients in each group reported equally sharing decision responsibility. Exposure to either decision aid increased patients' involvement in decision making compared with the control condition (Web site, P = .03; brochure, P = .03). Only 46% of control patients reported an active decision-making role, compared with 56% of Web site and 54% of brochure patients. Patients exposed to a decision aid answered a greater percentage of knowledge questions correctly (54% control vs 69% Web site, P <.001, and vs 69% brochure, P <.001) and were less likely to be screened (94% control vs 86% Web site, P = .06, and vs 85% brochure, P = .04). Patients in the decision aid groups were more informed and more engaged in the screening decision than their control counterparts. Exposure did not promote shared decision-making control, however. Whether shared decision making is the ideal model and how to measure its occurrence are subjects for further research.

Retention and Use of Breast Cancer Recurrence Risk Information from Genomic Tests: The Role of Health Literacy

New genomic technology now allows physicians to provide women with individualized and highly accurate breast cancer recurrence risk estimates that are a key factor in adjuvant (after surgery) therapy decisions. Because these genomic tests are so new, little is known about how well patients understand the tests and their results. We interviewed 163 stage I or II breast cancer patients at a routine follow-up appointment. We assessed their health literacy (using the Rapid Estimate of Adult Learning in Medicine) as well as their knowledge of and attitudes towards a genomic test that identifies risk of recurrence in hormone receptor-positive, node-negative breast cancer (the OncoType Dx Recurrence Score). Women with lower health literacy recalled less of the information provided about the recurrence risk test than women with higher health literacy. Health literacy was not related to the amount of additional information women desired. Women with higher health literacy preferred to have a more active role in decisions about the test. Health literacy may affect women's capacity to learn about the new genomic tests as well as their desire for informed participation in their medical care.

Truths and myths about community participation in post-disaster housing projects

It has been widely accepted by policy makers and commentators, funding bodies and NGOs that the key to performance in low-cost housing projects in developing countries lies in community participation. This paper proposes that this premise (extensively discussed in the theory and emphasized in grant applications) is not clearly reflected in the realities of reconstruction practice. In fact, there are many ways in which users/beneficiaries can participate in post-disaster reconstruction projects but not all types of participation ensure the best deployment of their capabilities. The systems approach shows that there is a continuum of possibilities for participation; at one extreme, users are involved in the projects only as the labour force, whereas at the other, they play an active role in decision-making and project management. Four case studies of post-disaster housing reconstruction projects (one each in Colombia and in El Salvador, and two in Turkey) illustrate this continuum. A comparative analysis of the organisational designs of these projects highlights the different ways in which users can be and were involved. We show the impact of the different approaches to the “where”, the “when” and the “how”, regarding incorporating the users into the organisational and technical design processes. This study shows that the participation of users in up-front decision-making (within the project design and planning phases, including the capacity to make meaningful choices among a series of options offered to them) leads to positive results in terms of building process and outcomes. However, despite often-good intentions, this level of participation is rarely obtained and the capabilities of the users are often significantly wasted.

Knowledge and decision-making for labour analgesia of Australian primiparous women

Objective to assess and investigate knowledge of labour pain management options and decision-making among primiparous women. Design a semi-structured guide was used in focus groups to gather pregnant women's knowledge concerning labour analgesia. Attitudes to labour and pain relief, knowledge of pain relief, trustworthiness of knowledge sources, and plans and expectations for labour pain relief were investigated. Setting a major tertiary obstetric hospital in metropolitan Sydney, Australia. Participants twenty five primiparous women, who were 25 weeks or more gestation, and planning a vaginal birth. Findings although women considered themselves knowledgeable, they were unable to describe labour analgesic risks or benefits. There was a large discrepancy between perception and actual knowledge. The main source of knowledge was anecdotal information. Late in pregnancy was considered the ideal time to be given information about labour analgesia. Women described their labour pain relief plans as flexible in relation to their labour circumstances; however, most women wanted to take an active role in decision-making. Key conclusions the large discrepancy between perceived knowledge and actual knowledge of the likely consequences of labour analgesia suggests that women rely too heavily on anecdotal information. Implications for practice clinicians should be aware that some women overestimate their knowledge and understanding of analgesic options, which is often based on anecdotal information. Standardised labour analgesia information at an appropriate time in their pregnancy may benefit some women and assist health-care providers and women to practice shared decision-making.

Process and Content of Decision Making by Advanced Cancer Patients

Process and Content of Decision Making by Advanced Cancer Patients

Improving comprehension of informed consent

Objective To explore the way the doctor–patient communication process may be improved by adopting the patients’ conversational style in the development of written materials for surgical patients. Methods Written information prepared by doctors, specialists in abdominal surgery, was tested for comprehension on patients undergoing cholecystectomy, using the standard Cloze test procedure. At the same time, the patients were asked to describe in their own words all they knew about their illness and the treatment. The collected 150 patient narratives were analyzed, and a typical narrative for each educational level was selected based on average SMOG score, word count and sentence length. The patient-worded information was then tested for comprehension on new patients, selected from primary health care, using the same Cloze procedure as with doctor-developed information. Patient profile of best lay communicators was defined using also sociodemographic characteristics, and reported information seeking and decision making preferences. Results Only 50% of patients completed Cloze test, of which over 40% showed poor comprehension. Analysis of transcribed narratives collected from 150 patients showed increasing complexity of style by educational level (average SMOG score 7, 8, and 9; sentence length 11, 13, and 15 words; for low, medium, and high educational level, respectively). Cloze tests based on typical narratives, and tested on primary care patients, indicated to the style best understood by all. Dominant characteristics of patients producing a narrative of similar style to the best-understood narrative were observed: medium educational level, women over 60, urban workers, interviewed after surgery, informed by specialist at ultrasound, knowledge about illness from 1 to 10 years, learned most about illness from lay people, those who wanted more information in both oral and written form, and preferred active role in decision making. Conclusion Analysis of patient profiles with typical narratives that were best understood by other patients shows where to look for lay experts in doctor–patient communication. Practice Implications Obtained findings indicate to the importance of patient participation in developing informed consent information, and to the possible method for improving comprehension of educational patient materials in general.