Challenges of regulatory rights of half-capacitated persons: A sociological perspective on the French Civil Code reform.

Democratic societies are based on the principle of equal legal capacity of all citizens to decide and act for themselves in all areas of social life. This "socio-civil capacity", which may involve both material property of an individual, as well as private life in matters ranging from health to personal relationships, is recognized by the law (both codified law and common law). These rights guarantee the autonomy and freedom of individuals in the name of respect for human dignity. Civil capacity of a person is legally diminished because his or her "natural" abilities, capacity, or competence are reduced. Recent social changes have lead to increased uses of legal measures of protection. The reasons for these changes are complex and they are accompanied by legislative reforms that modify the rights of half-capacitated persons. In this article, we examine certain issues of civil capacity rights based on the French example. We start present a perspective of the historical definition and practice of these rights as well as their democratization.

Rewards and unique challenges faced by African-American custodial grandmothers: the importance of future planning.

OBJECTIVES: This exploratory study examined the context and consequences of custodial grandparenting, along with attitudes and preferences regarding future planning among 22 African-American custodial grandmothers. METHOD: A mixed-method research design was employed. Based on our integration of two theories regarding future planning and health behavior change, caregiving, emotional distress, religiosity and spirituality, and future planning were assessed using questionnaires along with semi-structured interviews. RESULTS: African-American custodial grandmothers (mean age M = 53.64, SD = 9.58) perceived their caregiving role as rewarding (72%) yet challenging (86%). More than 40% reported significant emotional distress (CES-D ≥ 16) that warrants clinical attention. Findings showed that while 64% of study participants had future plans regarding who will substitute in their caregiving role if they become incapacitated, only 9% had completed a living will. Three major themes emerged regarding custodial grandmothers' caregiving role which includes: (1) rewards; (2) challenges including feeling overwhelmed and health concerns; and (3) caregiving decisions including conflicts between 'My plan was…/put self on-hold' for grandchildren and difficulty with future planning. These themes highlighted the dynamics of caregiving across time, including current context and the ongoing process of decision-making. CONCLUSION: Findings suggest that while African-American custodial grandmothers find caregiving rewarding, they face unique challenges in contemplating and developing future plans. Custodial grandmothers think about substitute caregivers for their grandchildren but need assistance communicating a plan focused on their own needs for future care. Culturally sensitive interventions designed to facilitate effective utilization of future plans within this caregiver population are needed.

Characteristics of persons refusing oral polio vaccine during the immunization plus days - Sokoto, Nigeria 2011.

INTRODUCTION: Nigeria, the only African country endemic for wild poliovirus, adopted Immunization Plus Days (IPD) to eradicate polio. Refusal of oral polio vaccine (OPV) by heads of households is a significant challenge. In Sokoto state, we determined characteristics of heads of households refusing OPV during IPD in 2011. METHODS: To evaluate reasons for refusals, we conducted a case control study among heads ofhouseholds accepting or refusing OPV vaccine. Noncompliant households were defined as households refusing OPV vaccination in last three rounds of IPDs while compliant households were those accepting vaccination. Interviewers administered a questionnaire to the heads of households to obtain information on socio-demographics, media habits, and knowledge of IPD. RESULTS: Of the 121 (60 cases and 61 controls) interviews, 88 (73%) were from Sokoto north. Noncompliant heads of households were more likely to lack tertiary education (OR = 3.7, 95% CI, 1.6 - 9.2), believe that OPV is not safe (OR = 22, 95% CI, 7.1 - 76), lack access to functional radio (OR = 4.4, 95% CI, 1.4 - 15) and television (OR = 9.4, 95% CI, (1.9 - 63) andget information about IPD from town announcers (OR = 3.9, 95% CI, 1.3 - 12). CONCLUSION: We conclude that noncompliant heads of households compared to compliant heads of households had low level of education, lacked knowledge of immunization, and had negative attitude towards OPV. They get information about OPV from town announcers and lacked access to functional radio and television. We recommended training of town announcers in polio communication and use of key communication messages preceding every round of IPD.

Wishard Volunteer Advocates Program: an intervention for at-risk, incapacitated, unbefriended adults.

Unbefriended, incapacitated individuals who lack surrogates to make medical decisions present a complex problem to the healthcare providers who treat them. Adults without surrogates are among the most vulnerable in the community and are often alone and estranged from family, neglected and abused, and at risk of receiving inappropriate medical treatment. This article describes the program model and outcomes for the first 2 years of the Wishard Volunteer Advocates Program (WVAP), a guardianship program using trained, supervised volunteers as surrogates for unbefriended, incapacitated individuals. Of the 50 individuals enrolled during the study period, 20 were female, and 39 were Caucasian and 11 African American. Their average age was 67. Nineteen were insured with Medicare as primary and Medicaid as supplementary insurance. Ninety-eight percent had four or more comorbid conditions at the time of the index hospitalization. Before program referral, many lived alone in unsafe conditions. Adult Protective Services was involved in almost half of the cases at the time of the index hospitalization. Approximately half of the participants required some type of property management. Healthcare usage data demonstrated that most were not receiving medical care before WVAP enrollment; the data indicated a decrease in emergency department visits and hospitalization after WVAP enrollment. The WVAP completed Medicaid applications for 12 participants, resulting in $297,481.62 in reimbursement for the index hospitalization and a payer source for subsequent hospitalization and long-term care. The volunteer advocate model provides an efficient and quality mechanism for providing unbefriended individuals with surrogates.

Unmet dental and orthodontic need of children with special healthcare needs in West Virginia.

INTRODUCTION: Of children aged 0-17 years in the USA, an estimated 11 203 616 (15.1%; 95% CI: 14.8, 15.3) are Children with Special Health Care Needs (CSHCN). The state of West Virginia, the heart of Appalachia, has a land mass which is 97.65% rural with previously identified high overall dental need and oral health disparities. It is home to an estimated 70 609 CSHCN, or 18.5% (95% CI: 17.0, 19.9) of the state's children in 2009-2010. The purpose of this study was to determine the parent/guardian's perceived unmet dental care need of CSHCN in West Virginia. METHODS: Data from the National Survey of Children with Special Health Care Needs was used to determine prevalence. A telephone survey of 59 941 parents/guardians of CSHCN (1149 from West Virginia) for the dental interview was conducted in 2009-2010. RESULTS: Nationwide, 26.7% (25.9, 27.5) of parents/guardians reported their CSHCN had dental care or orthodontia needs other than preventive care. In West Virginia, the perceived dental care or orthodontia needs other than preventive dental care need was 26.5% (22.2, 30.0). Unmet national dental care need other than preventive dental care was 5.4% (5.0, 5.9) and in West Virginia 5.0% (2.4, 7.5). CONCLUSIONS: CSHCN have significant unmet dental needs. Parents/guardians in West Virginia reported similar unmet need compared with national reporting. Policies to address the health care of CSHCN should include dental needs. The clinical implications are that CSHCN have a variety of needs, including orthodontia. The benefits of orthodontic referrals should be considered in treatment planning options for CSHCN.

A Lipskian analysis of child protection failures from Victoria Climbié to "Baby P": a street-level re-evaluation of joined-up governance.

This paper explores the issue of joined-up governance by considering child protection failures, firstly, the case of Victoria Climbié who was killed by her guardians despite being known as an at risk child by various public agencies. The seeming inability of the child protection system to prevent Victoria Climbié's death resulted in a public inquiry under the chairmanship of Lord Laming. The Laming report of 2003 looked, in part, to the lack of joined-up working between agencies to explain this failure to intervene and made a number of recommendations to improve joined-up governance. Using evidence from detailed testimonies given by key personnel during the Laming Inquiry, the argument of this paper is that we cannot focus exclusively on formal structures or decision-making processes but must also consider the normal, daily and informal routines of professional workers. These very same routines may inadvertently culminate in the sort of systemic failures that lead to child protection tragedies. Analysis of the micro-world inhabited by professional workers would benefit most, it is argued here, from the policy-based concept of street-level bureaucracy developed by Michael Lipsky some 30 years ago. The latter half of the paper considers child protection failures that emerged after the Laming-inspired reforms. In particular, the case of 'Baby P' highlights, once again, how the working practices of street-level professionals, rather than a lack of joined-up systems, may possibly complement an analysis of, and help us to explain, failures in the child protection system. A Lipskian analysis generally offers, although there are some caveats, only pessimistic conclusions about the prospects of governing authorities being able to avoid future child protection disasters. These conclusions are not wholeheartedly accepted. There exists a glimmer of optimism because street-level bureaucrats still remain accountable, but not necessarily in terms of top-down relations of authority rather, in terms of interpersonal forms of accountability ­ accountability to professionals and citizen consumers of services.

Assesment of household burden of orphaning and coping strategies by guardians and families with orphans and vulnerable children in Hossana Town, SNNPR.

BACKGROUND: Globally the number of orphans is increasing due to HIV/AIDS, internal corflicts and others. Orphanage and vulnerability causes much of its burden on poor households and children. OBJECTIVE: This study was initiated to assess household challenges of orphaning and coping strategies by families and guardians living with Orphan and Vulnerable Children (OVC). It has also tried to look at the types and level of challenge facing OVC. METHODOLOGY: Community based descriptive cross-sectional quantitative survey was conducted from October to November 2008 using a pre-tested Amharic questionnaire among guardians of OVC in Hossana town. Hadiya zone, SNNPR. A total of 334 samples were selected using a simple random sampling technique. RESULT: Sixty nine percent (69%) of guardians were women. Almost all of the OVC had participated in one domestic activity and 26.9% of OVC were involved in domestic work in other houses. A little more than twenty two percent (22.2%) have history of involvement in productive child labor; of whom 79.7% were found working at the time of data collection Above thirty five percent (35.6%) of respondents believe that the OVC are discriminated and 23.5% of the discriminators were step parents. As household coping mechanism 24.9% reported selling domestic animals, 15.6% selling household equipments and 12.9% sell plots of land which all occurs due to lack of resources in households. CONCLUSION AND RECOMMENDATION: The study concluded that caregivers lack sufficient resources to provide basic needs to OVC. Hence, community based training on micro finance assistance, discrimination and psychological support should be given to guardians and the community in general.

Adequacy of informed consent for lumbar puncture in a pediatric emergency department.

OBJECTIVE: To determine whether informed consent is adequately obtained by documentation of appropriate risks, benefits, alternatives, and procedure explanation for children who had a lumbar puncture (LP) in a pediatric emergency department (PED). METHODS: Authors agreed on the criteria for appropriate informed consent for LP, including risks and benefits of the procedure, alternatives to doing the procedure, explanation of the procedure including the purpose of the LP, and a signature of a witness. A retrospective chart review was done for all children who had LP during a 1-year period in a PED. Information documented on a general procedure consent form was analyzed. RESULTS: There were 336 patients who had LP in the PED during a 1-year period. Mean (SD) age of patients was 37.8 (61.9) months (median age, 1.6 months), and 56.5% were boys. Consent was obtained by attending physicians (18.9%), pediatric emergency medicine fellows (7.1%), residents (73.6%), and medical students (0.3%). Documented risks of the LP included back pain (19.3%), infection (88.2%), bleeding (86.5%), apnea for infants 1 year or younger (9.5%), and post-LP headache for children 10 years and older (44.9%). Benefits of the procedure were documented for 36.1%, alternatives for 12.5%, explanation of the procedure for 45.9%, purpose for 94.3%. There was no statistically significant difference for training level of person obtaining consent and risks documented. However, pediatric emergency medicine fellows documented benefits more frequently (P = 0.005), residents documented alternatives more frequently (P = 0.006), and attending physicians documented explanation of the procedure more frequently (P = 0.005). CONCLUSIONS: Risks, benefits, alternatives, and explanation of the LP procedure are not adequately documented on consent forms in the PED. Although the actual discussion with guardians is unknown, these data imply that informed consent may not have been properly obtained before the LP was performed. In the event of a complication and subsequent malpractice lawsuit, clinicians may be unable to demonstrate they adequately informed a guardian about the LP.

The guardians' perspective on paediatric cancer treatment in Malawi and factors affecting adherence.

BACKGROUND: Abandonment of paediatric cancer treatment is a common problem in developing countries. Little is known about the guardians' perspective on cancer treatment in these countries, especially the factors that affect adherence. METHODS: Following a pilot study enquiring into the possible causes of abandonment, a problem analysis diagram was drawn which helped to develop the questionnaires. Semi-structured interviews (n = 83) and focus group discussions (n = 8) were held with the guardians of 25 Burkitt lymphoma patients and 7 Wilms tumour patients at different phases of therapy in Malawi. RESULTS: Parents in Malawi are very motivated to continue treatment if they think that it will cure their child. Financial costs are important concerns. Not all tasks at home are assumed by other household members. The diagnosis of cancer was unknown before being told about it in hospital and caused fear of recurrence and death. Guardians are reluctant to ask the health personnel questions. They worry that taking frequent blood samples will weaken their child. The side effects of the chemotherapy are seen as a proof of efficacy. CONCLUSION: It is important to appreciate the guardians' concerns when offering treatment that requires their sustained commitment. It is necessary to provide not only medical treatment, but also travel allowances and adequate nutritional support during long hospital stays to impoverished families. Information should be given proactively.

Professional practice and innovation: identifying and flagging children and young people under state guardianship on the Patient Administration System (PAS).

In December 2006 a data matching trial was undertaken in partnership between Women's and Children's Hospital (WCH) and Families South Australia (SA), the state child welfare agency, to identify children and young people under guardianship of the Minister for Families and Communities with those already registered on the WCH Patient Administration System (PAS). By identifying this group of children, a priority health response could be initiated to improve their health and wellbeing. The data supplied by Families SA identified 1,683 children currently under guardianship. Data were compared against the WCH PAS, which identified that 72% (n = 1,212) of these matched with patients who were already registered on the PAS. There were 28% (n = 471) that did not match; these individuals were registered on the PAS so that if they did present to the hospital the appropriate measures could be taken to ensure they received the necessary treatment and follow-up.

The influence of motivational messages on future planning behaviors among HIV concordant positive and discordant couples in Lusaka, Zambia.

In Zambia the HIV/AIDS epidemic has resulted in many single female-headed households. Strong patriarchal laws and customs prevent widows and children from maintaining economic assets. This study examines the impact of a video-based motivational intervention promoting future planning in 1,504 HIV-infected couples in Lusaka, Zambia. Following a group video session, couples randomized to the motivational arm could choose to write a will, identify a guardian for their children and make financial plans. Desirable behaviours modelled in the motivational video were measured at quarterly intervals for a year and compared in intervention and control arms. Demographic measures including age, income and educational status were not associated with planning behaviours. Participation in the intervention was associated with will writing (23% versus 5%) and naming a guardian (32% versus 17%) but not with other planning behaviours. The study demonstrates the ability of motivational messages integrated into HIV VCT to encourage future planning behaviour and points to the need to expand existing HIV and VCT services to meet other non-health needs of those living with HIV.

Barriers to autopsy: Creutzfeldt-Jakob disease in New York state.

Surveillance of Creutzfeldt-Jakob disease (CJD) monitors trends and ensures timely identification of variant CJD and other emergent prion diseases. Brain tissue is needed to definitively diagnose these diseases. A survey of neurologists and pathologists in New York State was conducted to understand neurologists' and pathologists' views on autopsy and CJD. Neurologists reported using autopsy rarely or never. Over half of the pathologists worked in facilities that did not perform autopsies when CJD was suspected. Barriers to autopsy included family reluctance, infection control concerns, and local facilities unable to perform brain autopsy. More accurate, complete recognition of CJD and variant forms depends on physician awareness of the manifestations of CJD and its diagnosis, access to pathologists and facilities willing and able to perform brain biopsies and autopsies, and family acceptance of such procedures.

The Needs-Based Assessment of Parental (Guardian) Support: a test of its validity and reliability.

OBJECTIVE: The purpose of this paper is to present a newly developed measure of guardian support, the Needs-Based Assessment of Parental (Guardian) Support (NAPS), an empirical evaluation of that measure, and its comparison with another measure of guardian support. The theoretical model that underlies this measure applies humanistic theory and Maslow's hierarchy of needs to the understanding of guardian support. METHOD: The study employed a cross-sectional nonexperimental survey design using 183 nonoffending guardians who accompanied children presenting for a medical/forensic examination for sexual abuse. The NAPS and an existing measure of guardian support were administered during the hospital outpatient visit, and basic information concerning the child and abuse situations were gathered. RESULTS: The NAPS had robust psychometric properties and was culturally sensitive. Tests of specific hypotheses supported the construct validity of the measure and a conceptualization of guardian support as hierarchical, with four stages of support. CONCLUSIONS: The brevity and ease of administration of the NAPS for both the clinician and guardian suggest that it is a viable assessment tool. The strong support for the NAPS' underlying theoretical model suggests that the nonoffending guardians' available resources need to be considered when assessing guardian support.

Factors influencing the recommendation of nursing homes.

This article reviews and compares the perceptions of nursing homes by residents and their proxies (family, friends, etc.) and reports that residents tended to give higher ratings to services than do their proxies. The analysis attempts to determine why residents give higher marks, which group the facility should look to for feedback, and whether the ratings will help organize the strengths and weaknesses in the facility to produce positive word of mouth within the community.

The strain of guardianship for men in the United States.

This study examined the extent to which control, commitment, and support influenced the strain experienced among men in the U.S. who were acting as guardians for aged adults, an atypical role for such men. A total of 146 male guardians responded to a questionnaire. Results of the study showed that control and commitment were associated with less strain, whereas the use of formal support systems was related to greater levels of strain. Additionally, strain was found to be less prevalent among older guardians.

Surrogate and physician understanding of patients' preferences for living permanently in a nursing home.

OBJECTIVE: To evaluate patients' willingness to live permanently in a nursing home and surrogate and physician understanding of that preference. DESIGN: Evaluation of cross-sectional interview data from a cohort study. SETTING: Five academic medical centers. PARTICIPANTS: Seriously ill hospitalized adults enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). MEASUREMENTS: Patients' willingness to live permanently in a nursing home was measured on a 5-point scale ranging from "very willing" to "rather die." Ordinal logistic regression was used to identify patient demographic and clinical characteristics associated with this preference. Surrogate and physician perceptions of patient preferences were compared with patients' responses, and factors associated independently with surrogate and physician understanding of patient preference were identified. RESULTS: Of 9105 patients, 3262 (36%) provided responses to the study question: 7% were "very willing" to live permanently in a nursing home, 19% "somewhat willing," 11% "somewhat unwilling," 26% "very unwilling," and 30% would "rather die." Older age was associated independently with less willingness to live permanently in a nursing home (odds ratio [OR] = .90 per decade; 95% confidence interval [CI]: 0.85, 0.96). Patients with more education (OR = 1.03 per year; 95% CI: 1.00, 1.05) and more disabilities (OR = 1.05 per disability; 95% CI: 1.01, 1.09), and black patients (OR = 1.46 compared with white patients; 95% CI: 1.20, 1.76) were more willing to live in a nursing home. Surrogates understood 61% of patients' nursing home preferences but identified only 35% of patients who were willing to live permanently in a nursing home. Physicians identified 18% of patients willing to live permanently in a nursing home. CONCLUSION: Patient attitudes about living permanently in a nursing home can be elicited, cannot be reliably predicted from demographic and clinical variables, and are frequently misunderstood by surrogates and physicians. Elicitation of patient preferences regarding permanent nursing home placement should be explored before patients become unable to participate in decision making in order to enhance the concordance of patient preference with the way they spend the end of their lives.

Equity/inequity and patterns of guardianship of older persons.

There have been recent reforms of guardianship systems focusing on the rights of older persons in Australia, Austria, Canada, England, Germany, and the United States. Little is known, however, about the lives of guardians. Equity theory guided the investigation of four styles of guardianship: the tough, sympathetic, challenged, and sad. Among 317 guardians, perceptions of inequity and benefit differentiated the sad and tough from others. Implications for practice are suggested.