Forming partnerships with parents from a community development perspective: lessons learnt from Sure Start

The aim of this study is to explore some of the issues of service user participation in the planning and delivery of public services from a community development perspective. It draws on an action research evaluation study of a local Sure Start programme, which was introduced into an area without a tradition of community involvement in decisions about local services. The study describes and analyses the challenges of parent participation in the organisation and delivery of the Sure Start programme at an operational and strategic level, using findings from semi-structured interviews, observations and critical conversations with Sure Start parents, staff and members of the Sure Start management board. The main substantive findings are that there was a lack of shared understanding of the nature of parent participation in all its facets and this undermined the efforts of parents and staff in the development of the programme. These findings also raise broader issues about participation, the place of parental partnerships with professionals and ways in which collaboration between the two may be interpreted and evolve.     

Are elected health boards an effective mechanism for public participation in health service governance?

Background There is growing interest in the idea of elected members on health service governing boards as a means to induce public participation in planning and decision making, yet studies of elected boards are limited. Whether elected boards are an effective mechanism for public participation remains unclear. Setting and participants This article discusses the experiences of New Zealand where, since 2001, there have been three sets of elections for District Health Boards. Information on candidates and election results is presented along with data gathered via post‐election voter surveys. The article also considers the broader regulatory context within which the elected boards must operate. Discussion and conclusions The New Zealand experience illustrates that elected health boards may not be an effective mechanism for public participation. Voter turnout has declined since the inaugural elections of 2001, and non‐voters form the majority. Reasons for not voting include failure to receive voting papers, a lack of interest, or no knowledge of elections. The elections have also failed to produce minority representation, while the capacity for elected members to represent their communities is subject to constraints. On the upside, elections have enabled public involvement in various dimensions of participation, including oversight and processes of governance. New Zealand’s mixed performance suggests that elected boards may need to be complemented with other participatory channels, if increased public participation is the goal.     

Parental involvement in neonatal critical care decision‐making

The article analyses the decision‐making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision‐making were used by doctors: ‘making recommendations’ and ‘providing options’. Different trajectories for parental involvement in decision‐making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. ‘Making recommendations’ led to misalignment and reduced opportunities for questions and collaboration; ‘providing options’ led to an aligned approach with opportunities for questions and fuller participation in the decision‐making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance. A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/watch?v=MyuymxDNupk&feature=youtu.be     

Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States.

OBJECTIVES: State newborn-screening programs collectively administer the largest genetic-testing initiative in the United States. We sought to assess public involvement in formulating and implementing medical policy in this important area of genetic medicine. METHODS: We surveyed all state newborn-screening programs to ascertain the screening tests performed, the mechanisms and extent of public participation, parental access to information, and policies addressing parental consent or refusal of newborn screening. We also reviewed the laws and regulations of each state pertaining to newborn screening. RESULTS: Only 26 of the 51 state newborn-screening programs reported having advisory committees that include consumer representation. Fifteen states reported having used institutional review boards, another venue for public input. The rights and roles of parents vary markedly among newborn-screening programs in terms of the type and availability of screening information as well as consent-refusal and follow-up policies. CONCLUSIONS: There is clear potential for greater public participation in newborn-screening policy-making. Greater public participation would result in more representative policy-making and could enhance the quality of services provided by newborn-screening programs.     

Rural‐Urban Differences in Consumer Governance at Community Health Centers

Context: Community health centers (CHCs) are primary care clinics that serve mostly low‐income patients in rural and urban areas. They are required to be governed by a consumer majority. What little is known about the structure and function of these boards in practice suggests that CHC boards in rural areas may look and act differently from CHC boards in urban areas. Purpose: To identify differences in the structure and function of consumer governance at CHCs in rural and urban areas. Methods: Semistructured telephone interviews were conducted with 30 CHC board members from 14 different states. Questions focused on board members’ perceptions of board composition and the role of consumers on the board. Findings: CHCs in rural areas are more likely to have representative boards, are better able to convey confidence in the organization, and are better able to assess community needs than CHCs in urban areas. However, CHCs in rural areas often have problems achieving objective decision‐making, and they may have fewer means for objectively evaluating quality of care due to the lack of patient board member anonymity. Conclusions: Consumer governance is implemented differently in rural and urban communities, and the advantages and disadvantages in each setting are unique.     

Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units

Neonatal intensive care has been studied from an epidemiological, ethical, medical and even sociological perspective, but little is known about the impact of parental involvement in decision-making, especially in critical cases. We rely here on a comparative, case-based approach to study the parental role in decision-making within two technologically identical but culturally and institutionally different contexts: France and the United States. These contexts rely on two opposed models of decision-making: parental autonomy in the United States and medical paternalism in France. This paternalism model excludes parents from the decision-making process. We investigate whether parental involvement leads to different outcomes from exclusively medically determined decisions or whether "technological imperatives" outplay all other factors to shape a unique, 'medically optimal' outcome. Using empirical data generated from extensive ethnographic fieldwork, in-depth interviews with 60 clinicians and 71 parents and chart review over a year in two neonatal intensive care units (one in France and one in the US), we analyze the factors that can explain the observed differences in decision-making in medically identical cases. Parental involvement and the legal context play a less role than physicians' differential use of certainty versus uncertainty in prognosis, a conclusion that corroborates the fact that medical control over ethical dilemmas remains even in the context of autonomy. French physicians do not ask parents permission to withdraw care (as expected in a paternalistic context); but symmetrically, American neonatologists (despite the prevailing autonomy model) tend not to ask permission to continue. The study provides an analysis of the making of "ethics", with an emphasis on how decisions are conceptualized as ethical dilemmas. The final conclusion is that the ongoing medical authority on ethics remains the key issue.     

From rhetoric to reality: including patient voices in supportive cancer care planning

OBJECTIVE: To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co-ordination. CONTEXT: In 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks, the architects of the new provincial system hoped to broaden participation in decision making and to enhance the responsiveness of decisions to communities. RESEARCH APPROACH: Through a qualitative, multiple case study approach we evaluated the processes of involving patients in network development. In-depth, semi-structured interviews and document analysis were complemented by observations of provincial meetings, regional council and network meetings. RESULTS: The network development processes in the three case study regions reveal a significant gap between intentions to involve patients in health planning and their actual involvement. This gap can be explained by: (i) a lack of clear direction regarding networks and patient participation in these networks; (ii) the dominance of regional cancer centres in network planning activities; and, (iii) the emergence of competing provincial priorities. DISCUSSION: These three trends expose the complexity of the notion of public participation and how it is embedded in social and political contexts. The failed attempt at involving patients in health planning efforts is the result of benign neglect of public participation intents and the social and political contexts in which public and patient participation is meant to occur.     

Is parent and child weight status associated with decision making regarding nutrition and physical activity opportunities?

The objective of this study was to evaluate parents' versus children's level of decision making in regards to healthy eating and physical activity practices and how it relates to weight status. Cross-sectional parent responses to a series of visual analog items assessed the level of both parent and child involvement in decisions related to nutrition and physical activity. Participants included parent-kindergarten student cohorts in West Virginia from 2007 to 2009 (n=634). Mean nutrition and physical activity decision making scores were compared across four groups of parent and child weight status combinations. The results indicated that parents described equal involvement of the parent and child in nutrition and activity decisions within the home. Within families where the parent and/or the child were obese, parents reported more involvement of the child in nutritional decisions. Families with an obese parent and an obese child reported the highest level of child involvement in these types of decisions. In summary, this study found that families share involvement in decisions but greater child involvement may be associated with adult and/or child obesity. At least for younger children, decisions may prove healthier if parents have an equal or greater amount of input in the decisions related to healthy lifestyle choices.     

Parental Involvement During the Placement of a Child in Family Foster Care: Factors Associated with the Continuation of Parental Roles

This article presents the results of a study on parental involvement in family foster care. The aims of the study were: (a) to describe the participation of the parents, and (b) to identify variables associated with their participation. Fifty-eight (58) parents having a child in family foster care were interviewed with a face-to-face questionnaire. The results indicate that parents participate little in care-related tasks or school activities, but are more involved in decision-making and discussions concerning the child. We observed greater participation where the parent had a spouse or partner and where the social workers and foster parents seemed to have a positive attitude towards parental participation and towards the parents themselves.

Parental involvement and spousal satisfaction with division of early childcare in Turkish families with normal children and children with special needs

In this low-income Turkish sample, parents reported on father and mother division of childcare labor and satisfaction with division. Regardless of whether they were rearing typical or atypical children, mothers reported a higher level of involvement than fathers in every domain of childcare. In general, both mothers and fathers reported slight dissatisfaction with their own level of participation in childcare. Across groups, all mothers were significantly more dissatisfied (than their spouses were with their level of participation) with the fathers' level of participation in childcare. Best predictors of parental involvement were parent's employment status, satisfaction with partner level of involvement, and parent educational level.     

The Role of Parents and Partners in Minors' Decisions to Have an Abortion and Anticipated Coping After Abortion

PurposeDespite the prevalence of laws requiring parental involvement in minors' abortion, little is known about the effect of parental involvement on minors' abortion decision making and anticipated coping after abortion.MethodsWe analyzed data from medical charts and counseling needs assessment forms for 5,109 women accessing abortion services at a clinic in 2008, 9% (n = 476) of whom were minors aged 17 years and under. We examined differences in abortion characteristics, including parental and partner involvement, between minors and adults, and used multivariate logistic regression models to examine predictors of parental involvement and support, confidence in the decision, and anticipated poor coping among minors.ResultsMost minors reported that their mothers (64%) and partners (83%) were aware of their abortion. Younger age was associated with increased odds of maternal awareness and reduced odds of partner awareness. Compared with adults, minors were more likely to report external pressure to seek abortion (10% vs. 3%), and mothers were the most common source of pressure. Minors overall had high confidence in their decision and anticipated feeling a range of emotions post-abortion; minors who felt pressure to seek abortion were less likely to report having confidence in their decision (odds ratio = .1) and more likely to report anticipating poor coping (odds ratio = 5.6).ConclusionsMost minors involve parents and partners in their decision making regarding abortion, and find support from these individuals. For a minority, experiencing pressure or lack of support reduces confidence in their decision and increases their likelihood of anticipating poor coping after an abortion.     

Massachusetts high court upholds condom program in public school

The State Supreme Judicial Court of Massachusetts has ruled that school-based condom distribution does not require parental consent. The decision marks the first time a State supreme court has endorsed condom distribution in public schools. Condoms have been available to public high school students in Fallmouth, MA since 1991. Fallmouth's condom distribution program includes a counseling component wherein sexual abstinence is advocated. A parent group, supported by television evangelist Pat Robertson, sued the school committee, which led to the Supreme Judicial Court hearing and decision. The parents contended that condom distribution without parental notification and consent violates substantive due process rights and the First Amendment right to freely exercise religion. The Supreme Judicial Court found that the parents had failed to prove that condom-availability programs were so coercive as to infringe upon their parental rights.     

Factors Influencing Parental Involvement Among Minors Seeking an Abortion: A Qualitative Study

Objectives. We explored factors that influenced whether minors involved or excluded a parent when seeking an abortion.Methods. In the summer of 2010, we conducted interviews with 30 minors who sought an abortion in a state that did not require parental involvement at the time. Interviews were coded and analyzed following the principles of the grounded theory method.Results. The majority of minors involved a parent. Commonly cited factors were close or supportive parental relationships, a sense that disclosure was inevitable, a need for practical assistance, and compelled disclosure. Motivations for not wanting to involve a parent, although some minors ultimately did, included preservation of the parent–daughter relationship, fear or detachment, and preservation of autonomy.Conclusions. Minors were motivated to involve parents and other adults who were engaged in their lives at the time of the pregnancy, particularly those who supported them in obtaining an abortion. Motivations to exclude a parent were often based on particular family circumstances or experiences that suggested that involvement would not be helpful, might be harmful, or might restrict a minor’s ability to obtain an abortion.Nationally, nearly one third of pregnant women aged 18 years or younger seek an abortion.1 Currently, 38 states have parental involvement laws that require a parent provide consent or receive notification before a minor can access abortion. States do allow some exceptions in cases of abuse, assault, and medical emergencies.2 Courts have upheld parental involvement laws when an alternative for adolescents unable or unwilling to involve parents exists. In most states, this means a judge determines if the adolescent is sufficiently mature to waive parental involvement requirements, a process called “judicial bypass.” Although the majority of parental involvement laws have been in place since the 1990s, lawmakers have recently passed a new wave of legislation, including new parental involvement laws in states that lack them and stricter mandates for existing laws. Efforts to make parental involvement laws more restrictive include requiring parental consent instead of notification, mandating involvement of both parents, notarization of consent documents, heightened evidentiary requirements for judges to find a minor mature, and jurisdictional limitations on where minors can seek judicial bypass.3–5Previous studies, published in the 1980s and 1990s, found that parents were often involved in a minor’s decision regardless of the law. Those minors who did not wish to involve a parent often cited fear of negative parental reactions, lack of or fragile relationships with parents, and desire to avoid parental pressure in the decision-making process.6–10 The legal landscape has changed since these seminal studies, with a shift toward increasingly strict laws. There is limited current research exploring minors’ experiences and the factors influencing their decisions to involve or exclude parents when seeking an abortion.11States without parental involvement laws provide an opportunity to examine minors’ experiences involving adults in their abortion-seeking process in the absence of a legal requirement. In Illinois, the Parental Notice of Abortion Act was passed in 1995. The law requires physicians to give notice to an adult family member (defined as a parent, legal guardian, grandparent, or cohabiting step-parent) 48 hours before providing abortion services to a minor.12 However, because of legal challenges, the law was not implemented until August 2013. Previously, Illinois was the only state in the Midwest that did not enforce a parental involvement law. Our aim in this study was to explore the factors in abortion-seeking minors’ motivations regarding parental involvement. This snapshot before implementation of a new parental involvement law provided a rare opportunity to understand its potential impact.     

Participation in medical decision making: the patients' perspective.

PURPOSE: Variability in reports of patients' preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care. METHODS: The authors conducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner. RESULTS: Twenty-six persons were interviewed. The main themes discussed by the participants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the decisions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians' recommendations, and 5) patients make choices in the context of their specific illness perceptions. CONCLUSIONS: Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design.     

Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden

Background Much research has been devoted to the emotional burdens of having a child with intellectual disability (ID), but very little of this has focused on the burdens imposed by negative public attitudes towards disability. Adjustment has primarily been thought of as adjustment to the actual disability rather than adjustment to attitudes or prejudices towards disability. Aim The aim of the present study was to study expectations of and reactions to disability and normality experienced by parents of children with ID in their everyday life in Sweden. Research questions Do the parents relate to the tragedy discourse and, if so, how? Do parents relate to other expectations and disability discourses and, if so, how? What subject positions do the discourses offer? Method The analysis was based on 17 semi‐structured interviews with nine fathers and eight mothers of nine children with different IDs. The children were newly diagnosed and were from 6 months to 5 years of age. Results Four discourses (tragedy and the lived experience, tragedy and the outsider perspective, the clinical gaze and the super‐parent ideal) and subject positions relating to these discourses are discussed. Discussion The results of this study show that parents of young children with disabilities relate to a wide range of social processes and practices, which could be thought to affect their emotional well‐being and parental identity negatively.     

Parental involvement in the KIDS Family Centre: who does it work for?

Although parental involvement has been a major development in the field of disability and handicap, there has been relatively little systematic investigation of the value and appreciation of parental involvement from the parent's point of view. This study addresses the use and appraisal of services by parents at the KIDS Family Centre, Camden, London, which offers a variety of family-focused services with differing degrees of parental involvement. The evidence showed that the overall appraisal of the Centre was high but, given the choice, individual parents selected and appreciated different kinds of parental involvement services. Certain family background variables were associated with the pattern of selection and rating.     

The challenge of contributing to policy making in primary care: the gendered experiences and strategies of nurses

This paper explores nurses’ experiences as members of primary care organisations set up to develop and commission health services for local communities. Nurses, alongside GPs and other health professionals, were given a place on the governing bodies (boards) of Local Health Groups – a move widely welcomed by the nursing profession as long overdue recognition of the important contribution nurses and nursing could bring to the policy arena. Nurse board members faced a number of challenges in their attempts to contribute to and influence local health policy. This ethnographic study (which involved non‐participant observation of 33 board meetings and interviews with 29 board members including nurses) suggests that medical authority and control, and hierarchical power relations between doctors and nurses on the board, were seen by nurses as significant obstacles to their participation in this new policy arena. In response to their perceived lack of power and subordinate status, nurses employed a number of strategies to negotiate their participation as board members – these included ‘getting it right’, ‘achieving the right balance’, ‘self‐presentation’ and ‘unassertiveness’. These strategies reflected and reproduced gendered identities and relations of power and raise important questions regarding the influence of nurses and nursing within policy making.     

Child involvement in the paediatric consultation: a qualitative study of children and carers' views

Background This study aimed to investigate child and carers' attitudes towards child involvement in paediatric consultations. Methods Semi‐structured qualitative interviews explored child and carers' attitudes towards child involvement at different stages of the paediatric consultation process. Twenty families (21 children, 17 mothers and 5 fathers) were interviewed following a paediatric (index) consultation in two UK paediatric inpatient and outpatient departments. Results All but one family felt the child should be involved at some stage of the consultation process but the desired extent and nature of involvement depended on child, family and illness characteristics, as well as on the stages of the consultation. During history gathering, some parents and children felt it was the decision and responsibility of the parent to facilitate communication between the child and the doctor. Others expected the doctor to decide when and how to facilitate this process. At diagnosis the desired amount of information given to the child increased with increasing maturity in the child. Some felt making a diagnosis should be a collaborative process; others felt it was solely the domain of the doctor. In discussing and making a treatment plan, some children wanted to be given the choice of being involved and some wanted their parents to be responsible for implementing the plan. Some families with a seriously ill child, however, wanted the burden of involvement in the management plan taken away from them. Conclusions Families vary in their views about involvement of children in paediatric consultations in a way that may be unique to each child, family and illness. Moreover, different views were expressed about involvement in each stage of the consultative process and in management of the child's health. The challenge for doctors is to determine the level of involvement and information exchange favoured by a particular parent and child. Good practice recommendations emerging from the analysis are described.     

The association of hospital governance with innovation in Taiwan

Hospitals in Taiwan are facing major changes and innovation is increasingly becoming a critical factor for remaining competitive. One determinant that can have a significant impact on innovation is hospital governance. However, there is limited prior research on the relationship between hospital governance and innovation. The purpose of this study is to propose a conceptual framework to hypothesize the relationship between governance mechanisms and innovation and to empirically test the hypotheses in hospital organizations. We examine the relationship between governance mechanisms and innovation using data on 102 hospitals in Taiwan from the Taiwan Joint Commission on Hospital Accreditation and Quality Improvement. We model governance mechanisms using board structure, information transparency and strategic decision‐making processes. For our modeling and data analysis we use measurement and structural models. We find that in hospital governance, information transparency and strategic decision making did impact innovation. However, governance structure did not. To facilitate innovation, hospital boards can increase information transparency and improve the decision‐making process when considering strategic investments in innovative initiatives. To remain competitive, hospital boards need to develop and monitor indices that measure hospital innovation to ensure ongoing progress.     

Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters

Objective

To explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters.

Design

Qualitative semi‐structured interviews with 38 parents‐to‐be were collated and triangulated with data generated from consultation recordings.

Analysis

Data were analysed using a constant comparative‐based approach.

Setting

Recruitment was undertaken across four fetal medicine sites in two tertiary referral trusts.

Participants

Parents‐to‐be whose pregnancy was suspected or diagnosed as being affected by a severe congenital anomaly. This sample was purposive to include known factors affecting the decision to terminate or continue the affected pregnancy.

Findings

In trying to make a decision about how to proceed with their pregnancy, parents‐to‐be typically had to work hard to negotiate multiple uncertainties around the diagnosis and prognosis of the suspected anomaly. This was influenced by parents’ capacity to cope with uncertainty and the way in which uncertainty was managed by the clinical team. This negotiation of uncertainty was enacted within a fluid, nonlinear three‐phase process: “information seeking,” reflecting the way parents‐to‐be face the uncertainty associated with a fetal diagnosis and associated prognosis; “implications,” where consideration is given to future consequences of the decision; and “decision making,” which reflects the way in which the decision is made (head‐ or heart‐led). Spectrums of responses were apparent within each phase.

Conclusions

This study provides important insights into how parents‐to‐be make decisions following diagnosis or suspicion of a severe congenital anomaly. The impact of these on healthcare encounters is discussed, alongside recommendations for clinical practice.