Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

Service Delivery to Parents with an Intellectual Disability: Family‐Centred or Professionally Centred?

Background Studies support the use of family‐centred practices in service delivery to families where a parent has an intellectual disability. This paper examines the importance of such practices to parents. Materials and Methods Interview responses from 32 parents with intellectual disability were coded by two independent raters as reflecting family‐centred or professionally centred practice. Responses reflecting family‐centred practice were then coded as ‘relational’ or ‘participatory’ helpgiving. Results Service characteristics considered helpful by parents were more likely to be rated as family‐centred practice than professionally centred practice. Family‐centred practices considered helpful were more likely to be coded participatory than relational helpgiving. Conclusions The results support the conclusion that parents find family‐centred practices more helpful than professionally centred practices, and participatory helpgiving more helpful than relational helpgiving. The findings are discussed in relation to the tendency for an ‘implementation lag’ in service delivery to families.     

Neonatal nurses' perspectives of family-centred care: a qualitative study

Aims and objectives. The aim of this study is to explore neonatal nurses' perspectives of their role in facilitating family centred care in the neonatal intensive care unit. Background. The philosophy of family centred care focuses on the health and wellbeing of the newborn and their family, through the development of a respectful partnership between the health care professional and the infant's parents. Many studies report family centred care in the context of paediatric care; however, few studies explore neonatal nurses' perspective of family centred care in the context of neonatal care. Design. Qualitative interpretative approach. Methods. Four focus groups and five individual face-to-face interviews were conducted with neonatal intensive care nurses (total n?=?33) currently practicing in a tertiary Neonatal Intensive Care Unit in Australia. Each focus group and face to face interview was audio-taped and transcribed. Data was analysed using thematic analysis. Results. Four dominant themes emerged from the data: (1) Getting to know parents and their wishes (2) Involving family in the day to day care (3) Finding a 'happy' medium (4) Transitioning support across the continuum. Conclusion. These findings revealed a general understanding of family centred care principles. Nurses reported the potential benefits and challenges of adopting a family centred care approach to deliver optimal care for neonates and their families. The study highlighted that nurses need ongoing organisation support, guidance and further education to assist them in delivering family centred care effectively. Relevance to clinical practice. Family centred care is a central tenet underpinning neonatal care. Understanding neonatal nurses' perspectives will be useful when developing strategies to strengthen family centred care in the neonatal intensive care unit, and potentially improve neonatal care and family outcomes.     

The evolution of neonatal family centred care

In modern healthcare, family centred care is the commonly accepted approach to caring for neonates. Individualised family centred care is reported to mitigate the trauma experienced by parents and improve neonatal and family outcomes. Healthcare professionals must first understand the principles of effective family centred care to implement them, both in the context of their neonatal unit and the availability of resources. Neonatal nurses are the healthcare professionals most in contact with families in neonatal units, therefore have a vital role in providing family centred care. This narrative literature review examines the evolving understanding of neonatal family centred care from early beginnings to the present time, and the emerging benefits. Identified principles that underlie current understanding and practice demonstrate the complexity of neonatal family centred care. Collectively, these principles underpin current models of neonatal family centred care, with variations that focus on particular needs of neonates and their families.     

Perceptions of parents and healthcare professionals on family centred care in Australian neonatal units

The experiences of families receiving family centred care and of healthcare professionals providing family centred care in Australian neonatal units were evaluated by online surveys, distributed to families and healthcare professionals across Australia. Parents rated experience of partnerships, information sharing, coordinated care and respectful care in the moderate range. Healthcare professionals rated capacity to provide family centred care as moderate for interpersonal sensitivity, information sharing and treating people respectfully. Neonatal units providing moderate acuity care showed greater capacity to provide family centred care than intensive care or low acuity care units. These data provide a baseline and indicate room for improvement. Reasons for varying levels of family centred care provided by healthcare professionals in different neonatal settings require further investigation. Education of all staff on family centred care is required and targeted collection of data from parents at intervals will indicate progress in providing a higher level of family centred care.     

The Effect of Family Presence During Resuscitation and Invasive Procedures on Patients and Families: An Umbrella Review

IntroductionThe concept of family presence during resuscitation and invasive procedures is a controversial issue and has not been universally adopted by health care providers. Owing to the sheer number of studies in this field, we conducted this umbrella study to provide an overview of this concept with the aim of investigating the impact of family presence on patients, families, and resuscitation and invasive procedures.MethodsIn this review, using the Joanna Briggs Institute levels of evidence umbrella methodology guidelines, the authors searched PubMed, Google Scholar, Embase, MEDLINE, Web of Science, Scopus, and the Cochrane database for systematic review and meta-analysis studies that evaluated the presence of family during resuscitation and invasive procedures without time limit until July 2020. The following key words were used for the search: family presence; family witness; parent presence; parent witness; and resuscitation.ResultsA total of 254 articles published between January 1967 and July 2020 were screened. Five articles (1 meta-analysis and 4 systematic reviews) met the inclusion criteria. The review showed that family presence during resuscitation or invasive procedures does not have negative effects on family members, patients, or the resuscitation or invasive intervention process. Family members focus on the patients, not the ongoing treatment. The presence of family members is beneficial for both family members and health care staff. None of the reviewed studies reported a negative effect on family members.DiscussionThe presence of parents and other immediate family members during resuscitation and invasive procedures has positive impacts on patients, families, and health care staff.     

Families' and children's postoperative pain--literature review

The purpose of this study was to describe the findings of a literature review focusing on the viewpoint of family members in children's postoperative pain assessment and management. The study was based on empirical studies of families and children's postoperative pain published in 1991-2000. Eleven articles found in two databases (PubMed + Cinahl) were nonrandomly selected for an analysis. Qualitative deductive content analysis was used to investigate what is known about family members' views on children's postoperative pain based on empirical studies. The findings showed that families are a source of support for children in postoperative pain. However, parents have criticized pain-related instructions provided by the hospital staff. In addition, they have described difficulties in identifying and managing children's pain at home. Further research is needed to deepen our understanding on children's postoperative pain as a family experience. Family nursing theories could be used more in studies focusing on children's postoperative pain. More attention should be paid on parents' needs and on their counseling about children's pain in clinical pediatric nursing.     

Predictors of family satisfaction with an Australian palliative home care service: a test of discrepancy theory

Five interesting findings emerged from this study: Although study results demonstrate support for Porter's Discrepancy Theory, the most compelling outcome is the finding that family care perceptions may be the best predictor of family care satisfaction. Family members' age may be a predictor of family care satisfaction. Family functioning may be a useful clinical indicator to identify families who are less satisfied with care and in greater need of support. The length of time that clients receive the care service may alter family care satisfaction. Differences in findings reported in this study compared with Canadian results point to the need for cross-cultural research in this area. This research is the first Australian study to test discrepancy theory as a framework for understanding family care satisfaction in a home hospice context. Results from this study may assist health care providers to more sensitively address the care perceptions of families in this care setting and extend theory development research that is needed to guide palliative care practice with families.     

Developing relationships in long term care environments: the contribution of staff

Aims and objectives. The aim of this study was to consider how relationships in care homes influence the experience of older people, their families and staff. The main objective reported in this paper considers how these relationships are developed and the contribution that staff make to this process through the routines of care. Background. Relationships have been found to be integral to experiences of residents, families and staff in care homes but little is known about how these relationships develop. Few studies consider relationships in care homes as their main focus and there is a dearth of studies that consider relationships from the perspective of residents, families and staff within the same care home. Design. The study employed a constructivist design where the different perspectives held by participants were explored and shared to develop a joint construction of how relationships influenced their experiences. Methods. Data were collected from three care homes in England over two years between 2003–2005. Participant observation and interviews enabled a hermeneutic circle to be created between residents, families and staff. Data collection and analysis were conducted concurrently using a constant comparative method. Results. Staff adopted three approaches to care delivery and these influenced the type of relationships that were developed between residents, families and staff. The three approaches were described as individualised task‐centred, resident‐centred and relationship‐centred. Conclusion. This study progresses our understanding of the development of relationships between staff, residents and families in care homes by considering how the staff may support or constrain these relationships through their approach to care delivery. Relevance to clinical practice. These findings have implications for developing practice in care homes to improve the experience of older people and their families by encouraging staff to develop a relationship‐based approach to care routines.     

Family members’ perceptions of the nursing bedside handover

Aims and objectives. To explore families’ perceptions of shift‐to‐shift bedside handover. Background. The potential role families can play in bedside handover is unknown. Understanding family members’ perceptions can provide a foundation for nurses to tailor their bedside handover to family members’ perceptions, encouraging their involvement and potentially improving patient care. Design. Qualitative study, using case study methodology. Methods. The study was conducted with eight family members in one rehabilitation ward in Queensland, Australia, in 2009. Data included observations of bedside handover, field notes and in‐depth interviews. Thematic analysis of data was conducted to identify unique and common themes indicative of family perceptions. Results. Three major themes emerged. The first, understanding the situation, consisted of three subthemes: feeling informed, understanding the patient’s condition and understanding patient’s treatment. The second theme was interacting with nursing staff, with five subthemes, including sharing information, clarifying information, assisting in care, asking questions and interpreting for the patient. The final subtheme was finding value, which contained five subthemes: feeling at ease, feeling included, valuing individualisation, preparing for the future and maintaining patient privacy. Conclusions. Bedside handover provides an opportunity to involve family members in patient care and promote family‐centred care core concepts. Family members value the chance to participate and can ultimately improve the accuracy of handover communication. Relevance to clinical practice. Bedside handover is beneficial for nurses, patients and family members and embodies patient and family‐centred care. Managers should consider its implementation in hospitals, developing strategies such as standard operating protocols for a more family inclusive approach to communication. Nurses may require further training to best undertake bedside handover and involve family members in care. The study suggests expansion of research into this important area of family‐centred care.     

Family perspectives on dying in long-term care settings

Dying is a central experience in the life of a family. Yet there are few studies of dying in long-term care and the role of a family. The dynamic relationships among families, staff, and residents in long-term care facilities related to the process of dying is an area where research is needed. As part of a larger study of death and dying in long-term care settings, 11 family members who recently had experienced the loss of a relative in the long-term care setting were interviewed. The purpose of this study was to describe family perspectives on death and dying in long-term care facilities and to discuss ways staff may be helpful to families in coping with the loss of a family member. Analyzing death and dying from the family perspective offers health care providers an opportunity to expand the understanding of the phenomenon of death in long-term care facilities and to incorporate care activities that families view as helpful. Major themes emerged from this study, including the caring behaviors of staff, participating in the dying process, and providing spiritual support. The themes and practice implications are discussed in this article.     

Family members’ participation in palliative inpatient care: An integrative review

Aim

To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported.

Methods

This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis.

Results

The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members’ participation. Family members’ participation can be supported in different ways, including active communication and adequate information.

Conclusion

Family members’ participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.     

Methodological issues in interviewing families in family nursing research

AIM OF THE STUDY: The aim of this study is to discuss what methodological problems can be met in family research with one family member as an interviewee speaking on behalf of the whole family and, vice versa, what is the meaning of having multiple family members or the whole family unit as informants. BACKGROUND: Family nursing research is part of multidisciplinary research with families. It is a basis for family nursing and contributes to research, especially from the perspective of family welfare and its promotion. Family nursing research generates knowledge concerning families' and family members' wellbeing and experiences and expectations of nursing and health care. METHODS: The examination of methodological problems while pursuing family research is based on two studies conducted in Finland. FINDINGS: Quantitative methods add to the general knowledge of families. Qualitative methods are well suited to the study of family experiences. Family interviews performed for research purposes differ from interviews aiming at caring for families. They aim at obtaining knowledge of families on a general level so as to improve family nursing. Family research has to be looked at as a whole. It faces many challenges such as the definition of the family, gaining access, methods of data collection and data management. CONCLUSIONS: A family is a complex system and research with families need flexible, sensitive and practical methods. Family research should also aim at developing new methods for data collection and analysis.     

Clinical innovation for promoting family care in paediatric intensive care: demonstration, role modelling and reflective practice

AIM: To explore family caregiving problems in paediatric crisis care and methods that could be applied to move the abstraction of family care to development of specific family interventions. BACKGROUND AND RATIONAL: Family centred care has been accepted as the ideal philosophy for holistic health care of children, but methods for its implementation are not well established. In paediatric health crises, family care requires special sensitivity to family needs and a type of complex nursing care for which many practitioners are not sufficiently prepared. Developing family sensitive models of intervention and finding a strategy for transfer of this knowledge to clinical practice is an important challenge facing family nursing today. Social learning theory provides a rich background to explore these issues. CONCLUSIONS: Specific techniques of role modelling and reflective practice are suggested as effective approaches to teach family sensitive care in clinical settings where families are part of the care environment.     

Relationship centred outcomes focused on compassionate care for older people within in-patient care settings

This paper describes outcomes from research titled Leadership in Compassionate Care. The research adopts a participatory action research approach, utilizing appreciative inquiry and relationship centred care. Outcomes of the research are based upon relationships between patients, families and staff. This paper focuses on in-patient care for older people. A range of data generation activities were undertaken including: observation, interviews using emotional touch points and reflective accounts. To highlight outcomes in compassionate care, this paper uses case studies from two participating services. Principles of compassionate care were derived from understanding experiences of patients, relatives and staff and initiating responsive action projects. The aim was to enhance the experience of relationship centred, compassionate care. The process of emotional touch points enabled a richer understanding of experience. In terms of outcomes for patients this involved, enhanced quality of time spent with family and opening up conversations between families and staff. Outcomes for families involved enhanced access to relevant information and the opportunity to make sense of their situation. Staff outcomes were gaining experience in working alongside family to co-create the service, enhanced understanding of the experiences of patients and relatives led to direct changes in individual and team practices.     

The impact of family centred care interventions in a neonatal or paediatric intensive care unit on parents’ satisfaction and length of stay: A systematic review

ObjectiveTo explore the impact of family centred care interventions on parents’ satisfaction and length of stay for patients admitted to a paediatric intensive care unit or a neonatal intensive care unit.MethodsA systematic review was conducted. Searches have been done in Cinahl, Cochrane, Embase and PubMed from February 2016 till October 2017. All included studies were quality appraised. Due to the heterogeneity of interventions findings were narratively reviewed.ResultsSeventeen studies were included in this review of which 12/17 studies investigated parents’ satisfaction and 7/17 length of stay. For this review two types of interventions were found. Interventions improving parents-professional collaboration which increased parents’ satisfaction, and interventions improving parents’ involvement which decreased length of stay. Overall quality of the included studies was weak to good.ConclusionsStrong evidence was found for a significant decrease in length of stay when parents where participating in caring for their infant in a neonatal intensive care unit. Moderate evidence was found in parents’ satisfaction, which increased when collaboration between parents and professionals at a neonatal intensive care unit improved. Studies performed in a paediatric intensive care setting were of weak to moderate quality and too few to show evidence regarding parents satisfaction and length of stay.     

Interactions between family members and staff in intensive care units--an observation and interview study

BACKGROUND: Research about interactions between family members and staff are sparse, although family members' needs and experiences in intensive care units are well researched areas. AIM: The aim was to describe and interpret interactions between family members and staff in intensive care units. METHODS: Interviews (n=24) with family members and repeated observations of interactions of family members and staff in intensive care units were performed and analysed together by means of content analysis. RESULTS: The initial interactions between staff and family members had a substantial effect on family members and influenced their further interactions with the staff. Two kinds of interactions were revealed; mutual understanding and mutual misunderstanding. Family members, who understood the explicit information and the implicit messages were open in communication with the staff, adjusted well to the system, were acknowledged by the staff and sometimes consoled. Family members, who had difficulties understanding information and implicit messages drew back from communication with staff, did not adjust to the system and were sometimes insulted by the staff. CONCLUSIONS: Unambiguous information from the staff is important for developing interactions of mutual understanding. The results may be a starting point for intensive care unit staff to reflect on how all family members are initially met and further informed and treated. Further research of family members' experiences of interactions with staff in a longitudinal perspective and the influence of critical illness on families are needed.     

Negotiation of care by children's nurses: lessons from research

Parental participation and role negotiation are central elements in family-centred care, but research suggests that such negotiation tends to be ad hoc, depending on the relationships developing between the family and health professionals. Lack of effective communication, professional expectations and issues of power and control often prevent open and mutual negotiation between families and health professionals, especially nurses. This article summarises key lessons from a critical review of relevant research literature (Corlett and Twycross 2006) which suggests that nursing staff often control parental participation leaving parents feeling disempowered and deskilled. Poor communication and lack of information sharing exacerbate the situation. Where parents do not comply with nurses' expectations conflict can arise, resulting in more anxiety for already stressed parents. Current health policy requires that health workers listen to children and their families, to actively involve them in the decision-making process and to plan care around their needs and wishes. Nurses need to be aware of the way they interact with parents and the control they may unwittingly exert. A greater emphasis on communication, interpersonal and negotiation skills within nurse education is also needed.