Andrew J Gibson1, Gillian Lewando-Hundt, Loraine Blaxter. 1. Research Fellow in Patient and Public Involvement, Peninsula Medical School, Exeter, UKProfessor, Institute of Health, University of Warwick, Coventry, UKSenior Research Fellow, Institute of Health, University of Warwick, Coventry, UK.
Abstract
AIMS: We draw on the work of Nancy Fraser, and in particular her concepts of weak and strong publics, to analyze the process of parental involvement in managed neonatal network boards. BACKGROUND: Public involvement has moved beyond the individual level to include greater involvement of both patients and the public in governance. However, there is relatively little literature that explores the nature and outcomes of long-term patient involvement initiatives or has attempted to theorize, particularly at the level of corporate decision making, the process of patient and public involvement. METHODS: A repeated survey of all neonatal network managers in England was carried out in 2006-07 to capture developments and changes in parental representation over this time period. This elicited information about the current status of parent representation on neonatal network boards. Four networks were also selected as case studies. This involved interviews with key members of each network board, interviews with parent representatives, observation of meetings and access to board minutes. RESULTS: Data collected show that a wide range of approaches to involving parents has been adopted. These range from decisions not to involve parents at this level to relatively well-developed systems designed to link parent representatives on network boards to parents in neonatal units. CONCLUSION: Despite these variations, we suggest that parental participation within neonatal services remains an example of a weak public because the parent representatives had limited participation with little influence on decision making.
AIMS: We draw on the work of Nancy Fraser, and in particular her concepts of weak and strong publics, to analyze the process of parental involvement in managed neonatal network boards. BACKGROUND: Public involvement has moved beyond the individual level to include greater involvement of both patients and the public in governance. However, there is relatively little literature that explores the nature and outcomes of long-term patient involvement initiatives or has attempted to theorize, particularly at the level of corporate decision making, the process of patient and public involvement. METHODS: A repeated survey of all neonatal network managers in England was carried out in 2006-07 to capture developments and changes in parental representation over this time period. This elicited information about the current status of parent representation on neonatal network boards. Four networks were also selected as case studies. This involved interviews with key members of each network board, interviews with parent representatives, observation of meetings and access to board minutes. RESULTS: Data collected show that a wide range of approaches to involving parents has been adopted. These range from decisions not to involve parents at this level to relatively well-developed systems designed to link parent representatives on network boards to parents in neonatal units. CONCLUSION: Despite these variations, we suggest that parental participation within neonatal services remains an example of a weak public because the parent representatives had limited participation with little influence on decision making.
Authors: Akram Khayatzadeh-Mahani; Krystle Wittevrongel; Lisa Petermann; Ian D Graham; Jennifer D Zwicker Journal: Health Res Policy Syst Date: 2020-04-17