Family-centred care for hospitalized children aged 0-12 Years: A systematic review of qualitative studies.

Abstract

Review question/objective The objective of the review is to synthesise the existing evidence on family and/or health providers' experience of family-centred models of care for hospitalised children aged 0-12 years (excluding premature neonates). (*Some sections of this protocol are adopted or adapted from the Cochrane Systematic Review of family-centred care in hospitalised children 0-12 years (2007)1 and its update (2012)2 and are published here with permission from Wiley. A more detailed discussion of the development of the concept of family-centred care is available in these publications.) Background Family-centred care is defined as “a way of caring for children and their families within health services which ensures that care is planned around the whole family, not just the individual child/person, and in which all the family members are recognized as care recipients”.3, p.1318 A number of related terms have been used to describe the attributes of family-centred care;4 these include partnership-in-care,5 parental involvement,6 nurse-parent partnership,3 parental participation,7 and care-by-parent.8,9 Until at least the late 1950s, hospitals worldwide tended to be bleak places for children. It was believed that visits from parents would inhibit effective care10 and were detrimental to the child, who would become distressed when the parents left.11,12 Researchers began to suggest, however, that children whose parents did not visit them suffered acute emotional trauma which may have long-term psychological consequences in adolescence and adulthood.13,14 In 1956, the British government commissioned a report into the welfare of children in hospital. The resulting report, the Platt Report15, recommended that visiting be unrestricted, that mothers stay in hospital with their child, and that training of medical and nursing staff should promote understanding of the emotional needs of children. The process of change has resulted in a humanisation of paediatrics,16,17 although the movement away from traditional approaches to health service delivery to the involvement of families in all aspects of the planning, delivery, and evaluation of health care has been slow.18,19 The foundation for a family-centred approach to paediatric health care is the belief that a child's emotional and developmental needs, and overall family wellbeing, are best achieved when the service system supports diligently the ability of the family to meet the needs of their child, by involving families in the plan of care.20–22 Potential Advantages and Disadvantages of Family-Centred Care There are a range of potential benefits and difficulties associated with the provision of family-centred care. One of these is the degree to which the family is seen as responsible for the child's care. In a number of cases family-centred care has been interpreted as care that is led by parents, who are regarded as expert in the care of their child, with the health professional acting as a consultant.6,7 However, in recent years research has indicated that parents feel that they are being made totally responsible for the care of their child and the expectations of them, at least initially, are too great. In Coyne and Cowley's8 words: “the pendulum has swung too far in the other direction”.p.893 They are much more comfortable working a truly collaborative way with health-care providers.9 The hospitalisation of a child, whether planned or unplanned, is stressful for even the most well-organised and functional family.23 The significant adjustments to both parent and healthcare provider roles when a child is hospitalised may result in understandable levels of stress.24 A number of studies report that the stress levels of parents are reduced by being more informed and involved in caring for their children while in hospital.25 However, on the other hand involvement can lead, at least in the short term, to additional stress or anxiety for both the parents and child. Parents may feel that they are expected to provide input into the care of their child beyond their expectations or capabilities, or are given more information than either the child or the family is ready to hear. Professional communication and the provision of information are key elements in the success or otherwise of family centred care. In their study of parents' information needs in relation to their chronically ill children, Hummelinck and Pollock26 highlighted the double-edged nature of information in these situations; there is a delicate balance between the positive effects and the potentially negative impact i.e. it can increase anxiety. Information was also a theme identified in Ygge's27 study of nurses' perceptions of parental involvement in hospital care. Not only did the nurses indicate that it was important to discuss with the parents what information was important to them at each stage, but that the information provided to them must be the same from all health personnel. Family centred care also requires specifically designed or adapted facilities. Verwey, et al28 found that attending to parent's physical needs was an important component in reducing stress. Ensuring aspects such as comfortable sleeping arrangements, nutritious food and time to relax away from the ward made a family's experience a more positive one. Researchers have also reported challenges when trying to implement changes which would result in meaningful family involvement in the care of their hospitalised child. Healthcare providers have reported a lack of adequate education in relation to understanding and implementing the concept of family-centred care in a practice situation, as well a lack of shared understanding of, and commitment to, family-centred care among all health professionals and families.18, 29–32 Darbyshire7 suggested that family-centred care was a wonderful idea, but difficult to implement effectively. A number of authors agree, questioning family-centred care as a model of care.31,33 and the ethics of continuing a model which is becoming increasingly described as ineffective are under scrutiny.34 Standard Models of Health Care for Children Family-centred care is regarded as different to the ‘standard’ models of care used in paediatric health services. In the latter, often the healthcare provider plays a major role in assessing and formulating a plan of care, based upon the perceived needs of the child and/or family. In the medical or standard model of health care, the healthcare worker plans care around the child's illness and treatment needs, and the family is generally expected to comply with treatment recommendations.35 Implementation of Family-Centred Care It is expected that the development, implementation and outcomes of family-centred models of care may differ according to the population and setting in which the models are applied. For example, the needs and outcomes for families with a chronic condition who experience long hospital stays may differ from those of families of a previously healthy young child who is admitted for a treatment procedure. Also, older children may have a greater awareness and understanding of the reasons for their hospitalisation. Therefore, models of care may reflect increased participation of the child in their hospital care. However, even if the processes of family-centred care are seen as making a difference and advantageous in their own right, reliable reassurance that they result in more good than harm should be sought. Currently there is limited systematic information on how these principles have underpinned changes in healthcare practice and service delivery when a child is hospitalised, and the effect of family-centred approaches on child and family outcomes and health service delivery.20 Several systematic reviews have been conducted on the effectiveness of family centred care but very few studies have met the inclusion criteria. Consequently no conclusions could be drawn from these reviews. Shields, et al.1 conducted a Cochrane review of the effectiveness of family-centred care including randomised control trials, before and after and cohort studies from 1960 to 2004. An update of the Cochrane review was also undertaken by Shields, et al.2 in 2012 which examined randomised control trials only from 2004 to December 2011. Furthermore, Shields, et al.36 conducted a systematic review of quasi-experimental studies on the topic published between 2004 and December 2011. A literature review by Shields37 on the topic examined qualitative studies published between 1990 and 2004. Eleven research articles were included in the review. Three main themes emerged: role negotiation, parental expectation of participation in their child's care, and issues relating to power and control. The findings revealed that family-centred models of care were influenced by negotiation between staff and families, and roles of both parents and staff within interactions that took place in hospital during a child's admission. Corlett and Twycross38 also reviewed evidence on the negation of parental roles within family-centred care. The results revealed that family participation in their child's care hindered by nurses' lack of communication and limited negotiation. Nurses did not routinely negotiate with parents even though nurses had clear ideas on what nursing care parents could be involved in. In addition, Coyne39 conducted a review of both research and literature from 1993 to 2007 on children's participation at the health service level. It was found that children were rarely involved in decision-making process and their views were rarely sought nor acknowledged. To date, there is no formal systematic review on the qualitative evidence of family-centred models of care. This systematic review aims to examine any qualitative studies from 2004 to December 2012 that address the experiences and /or perceptions related to family-centred care by families and/or health care providers. Inclusion criteria This review will consider studies that include hospitalised children aged 0-12 years (but excluding premature neonates), their family and/or health providers. Definitions: Child/children: throughout this review, the term ‘child’ or ‘children’ is used to include all newborn infants, babies and children up to the age of 12 years being cared for in hospital; and all parts of hospitals that provide a service to children. The definitions of childhood can vary, and age limits are arbitrary. For the purpose of this review the National Library of Medicine's medical subject headings were used to define the age cut off of 12 years. However, we have excluded neonates born prematurely and who are patients in a neonatal intensive or special care nursery, as their requirements for family-centred care, and the ethics and philosophies of care around this particular group, are different to those in a ward/unit where full term infants and children are nursed.40 We have excluded studies about adolescents for similar reasons. Families: throughout the review the following definition of the family will be applied: The family is a basic social unit having as its nucleus two or more persons, irrespective of age, in which each of the following conditions are present: the members are related by blood, or marriage, or adoption, or by a contract which is either explicit or implied; the members communicate with each other in terms of defined social roles such as mother, father, wife, husband, daughter, son, brother, sister, grandfather, grandmother, uncle, aunt; and they adopt or create and maintain common customs and traditions. This definition has been modified from Nixon's original definition41 to allow for inclusion of significant others who do not usually cohabit with the family. Healthcare providers involved in caring for hospitalised children. For the purposes of the review, a healthcare provider will be used to describe any health professional involved in the care of hospitalised children. Phenomenon of interest The review will consider studies that investigate family and/or health providers' experience of family-centred models of care for hospitalised children. Only studies that provide clear evidence that the family and/or child were actively involved in the planning and/or delivery of health care during the child's hospitalisation will be considered for inclusion. For the purposes of the review, the minimum criteria for active involvement included evidence of collaboration between health carers and the family and/or child in the planning and/or delivery of care as soon as possible after admission or during the preadmission period. The elements of family centred care can be grouped into three clusters as follows:5 Family as a constant Culturally responsive Supporting family individuality. ‘Family as a constant’ can be evidenced by: Recognising family strengths Parent/professional collaboration Needs-based family support Flexible provision of health care Sharing information with families. Examples of how the family centred care model can be ‘culturally responsive’ include, but are not confined to, the family receiving culturally competent health care and respect being shown for family diversity. ‘Supporting family individuality and need for different types of family support’ can be demonstrated by: Respecting family coping methods Providing emotional support Family-to-family support Attending to developmental needs of the child and family. Further details are contained in Appendix I. Exclusions: Facilitating parent-to-parent support studies where there is no clear evidence of collaboration between the family and/or child and health care provider in the planning and/or delivery of care will be excluded. Such studies would include parental presence during health care procedures such as routine examinations, anaesthetic induction, venepuncture and post-anaesthetic recovery or bereavement team/protocols. Parental presence on these occasions without any framework of ongoing collaboration, communication, etc. does not meet the holistic principles on which family-centred care is based. Types of Outcomes This review will consider studies that include but are not confined to the following outcome measures: Experience of family-centred care models of care from family and/or health providers: clarity of role expectations nature of relationships between family and health care providers parental comfort with the extent of their degree of involvement in child's care content, consistency, timeliness, understandableness and degree to which information provided meets parent's needs family members' stress and anxiety levels adequacy of facilities for family's needs health care providers' support for the collaborative model of care adequacy of health care providers' knowledge and skills, and available time to implement family centred care. Perceptions of family-centred care models of care by family and/or health providers: how the experience is viewed degree to which expectations are being or have been met degree to which the model of care has been individualised to meet specific needs of families degree to which the model of care is implementable in actual operating contexts degree to which health care providers are committed to the model's implementation. Types of studies The review will consider qualitative studies. This includes, but is not limited to, designs such as phenomenology and grounded theory. Search strategy The search strategy aims to find both published and unpublished studies. There will be no limitation by publication language and databases will be searched from inception to date. A three-step search strategy will be utilised in each component of this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. The databases to be searched include: Medline CINAHL Embase PsycINFO CSA Sociological Abstracts The search for unpublished studies will include: Web of Science Conference Proceedings Australian Research Online UK Clinical Research Network: Portfolio Database Bandolier Google MedNar Initial keywords to be used will be: child/children, parent/s, health services, family centered care/family centred care Assessment of family-centredness To begin with, we will screen all potential studies for family-centredness. In order to assess relevant studies for the degree of family-centredness, this review will utilise a modified rating scale based on that developed by Trivette5 (Appendix I). These authors used the 9 elements of family-centred care, as described by the Association for the Care of Children's Health, to develop 13 evaluation items that describe the features of family-centred care. These sub-elements are further grouped into three cluster groups (Cluster 1: family as a constant; Cluster 2: culturally responsive; Cluster 3: supporting family individuality) derived from an original cluster analysis by Trivette.5 The clusters were designed to be used to help describe the model of family-centred care for individual research studies. A rating of 0 to 4 will be applied to each of the 13 sub-elements of family-centred care, as follows: 0. Article includes no evidence that the intervention either implicitly or explicitly was based upon the elements of family-centred care. 1. Article includes a minimal amount of implicit evidence that the intervention was based on the elements of family-centred care. 2. Article includes numerous instances of implicit evidence that the intervention was based upon the elements of family-centred care. 3. Article includes a minimal amount of explicit evidence that the intervention was based upon the elements of family-centred care. 4. Article includes numerous instances of explicit evidence that the intervention was based upon the elements of family-centred care. The maximum possible score is 52. Two reviewers will independently score the study against Family Centredness Score Form (Appendix I). The scores from the two reviewers will be averaged as the final score for the study. One of three ‘degrees of family-centredness’ will be assigned to each study assessed: A study with a score of 42 or more from a possible total of 52 (80%) will be considered as having a “high degree of family-centredness”, Those studies scoring between 50% and 80% will be classified as having a “moderate degree of family-centredness”, Those studies scoring below 50% will be classified as having a “low degree of family-centredness”. Those studies with a family-centeredness score of less than 50% will be excluded from the study. Assessment of methodological quality Those studies that are classified as having either a high or moderate degree of “family centredness” will then be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix II).42 Any disagreements that arise on either instrument - family centeredness or quality of studies - between the reviewers will be resolved through discussion, or with a third reviewer. Data collection Qualitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-QARI(Appendix III).42 The data extracted will include specific details about the populations, study methods and findings of significance to the review question and specific objectives. Data synthesis Meta-synthesis of the qualitative findings will be undertaken. This involves aggregation or synthesis of the findings to generate a set of statements that represent that aggregation through assembling the findings (Level 1 findings), and categorising the findings based on similarity in meaning (Level 2 findings). These categories are then subjected to a meta-synthesis to produce a single comprehensive set of synthesised findings (Level 3 findings) that can be used as a basis for evidence-based practice. Conflicts of interest There are no reported conflicts of interest. Acknowledgements There are no sources of external funding to report. The authors would like to thank the Cochrane Communication and Consumers Review Group, and John Wiley & Sons Ltd, for permission to publish sections of the Cochrane Systematic Review on Family-centred Care for Hospitalized Children aged 0-12 years.1