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Family-centred care for hospitalised children aged 0-12 Years: A systematic review of quasi-experimental studies

JBI Database of Systematic Reviews and Implementation Reports: Volume 9 - Issue 16 - p 1–18
doi: 10.11124/jbisrir-2011-341
Systematic Review Protocol
Free

Reviewers

Linda Shields PhD, FRCNA1 and Huaqiong Zhou MCN; BSc; RN; ACPCHN2

1Centaur Fellow; Professor of Paediatric and Child Health Nursing, School of Nursing and Midwifery and WACEIHP; A Collaborating Centre of the Joanna Briggs Institute. Affiliated with the Western Australia Centre for Evidence Informed Health Care Practice.

Contact: l.shields@curtin.edu.au

2Research Officer, School of Nursing and Midwifery, Curtin University; WACEIHP. A Collaborating Centre of the Joanna Briggs Institute

Contact: h.zhou@curtin.edu.au

Associate Reviewers

Ailsa Munns RN RM CHN (Cert) BSc (Nursing) Master (Nursing) FRCNA

3Lectuer, School of Nursing & Midwifery, Curtin University

Contact: a.munns@curtin.edu.au

Marjory Taylor B App Sci; BA4

4Head of Department, Library and Information Service, Child and Adolescent Health Service Princess Margaret Hospital, Western Australia.

Contact: Marjory.taylor@health.wa.gov.au

Elaine Pascoe MBiostat; BSc(Hons) 5

5 (1)Princess Margaret Hospital for Children, Child and Adolescent Health Service Princess Margaret Hospital, Western Australia and School of Paediatrics and (2)Child Health, The University of Western Australia, Western Australia. Contact: Elaine.pasco@health.wa.gov.au

Judith Hunter MBE; MA; BSc(Hons); RGN; RSCN; RNT; Cert Ed6

6Nursing and Quality, City Hospitals Sunderland NHS Foundation Trust, Sunderland, UK

Contact: Judith.hunter@ntlworld.com

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Review objective

The objective is to identify the effectiveness of family-centred models of care for hospitalised children aged 0-12 years (excluding premature neonates) when compared to standard models of care.

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Background

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 care 1 and were detrimental to the child, who would become distressed when the parents left.2,3 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.4,5 In 1956, the British government commissioned a report into the welfare of children in hospital. The resulting report, the Platt Report 6, 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, 7,8 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.9,10 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.11-13

Much of the literature concerning family-centred care has originated from the UK and USA, which are developed and culturally-distinctive (predominately Anglo-Saxon) societies.14 In low and middle income countries with fewer technological, economic and human resources, specific information about the psychosocial care of children in hospital is limited. 14,15 Shields found that in some developing countries, parents were encouraged to stay with their hospitalised child only if it fitted with hospital rules. 15 Stanford reported that in Central America where children's health is poor, some hospitals allowed parents to stay when their child was acutely ill, while some restricted parental visiting to one hour per day. 16 These restrictions on parental visiting were thought to be the result of space limitations and lack of facilities rather than a philosophical objection to parents being present. A study in Tanzania found that mothers were concerned about environmental conditions such as overcrowding and lack of food while their children in hospital, while staff's concerns included lack of trained staff, overwork and low pay 17, and a study from Iran has also highlighted problems with the implementation of family-centred care models.18 Family-centred care in high-income countries has been explored as care that is led by parents, with the health professional acting as a consultant, encouraging open and honest dialogue with the family. 14,19 The family is acknowledged as expert in the care of their child, and the perspectives and information provided by the family have been described as important to clinical decision-making. 13,14,20 In the UK, the importance of promoting the role of families in the care of the hospitalised child has been acknowledged. 21 A number of related terms has been used to describe the attributes of family-centred care19; these include partnership-in-care22, parental involvement(23), nurse-parent partnership24, parental participation25, and care-by-parent.26,27 In 1992, the Institute for Family-Centered Care was established in the USA, taking over the role of the Association for the Care of Children's Health, whose task it had been to develop a nationwide program to enhance the implementation of a family-centred approach to the care of infants, children, and adolescents. Much of the family-centred care literature from the USA refers to the seminal work of Shelton28, who developed a framework for offering family-centred care to children. Within this framework, Shelton and colleagues delineated eight elements which characterise health services which are family-centred.29 Subsequently, a ninth element was included.3

The nine elements of family-centred care include:

- recognising the family as a constant in the child's life;

- facilitating parent-professional collaboration at all levels of health care;

- honouring the racial, ethnic, cultural, and socio-economic diversity of families;

- recognising family strengths and individuality and respecting different methods of coping;

- sharing complete and unbiased information with families on a continuous basis;

- encouraging and facilitating family-to-family support and networking;

- responding to child and family developmental needs as part of healthcare practices;

- adopting policies and practices that provide families with emotional and financial support; and

- designing health care that is flexible, culturally competent, and responsive to family needs.

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According to the Institute for Family-Centered Care's definition:

Family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships between and among consumers and health providers. Family-centered practitioners recognise the vital role that families play in ensuring the health and well being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental supports are integral components of health care. They promote the health and well being of individuals and families and restore dignity and control to them. Family-centered care is an approach to health care that shapes policies, programs, facility design, and staff day-to-day interactions. It leads to better health outcomes and wiser allocation of resources, and greater patient and family satisfaction”.20 It has been suggested that to practice in a family-centred manner requires a shift in the orientation of health services from a standard model to a collaborative model which recognises family involvement as central to their child's care. Within this view, the healthcare provider is an equal partner and facilitator of care, and families are invited to participate actively in the decision-making, planning and provision of their child's care to the extent they choose.30,31

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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. For instance, in one study, the stress levels of parents whose children were intensive care unit inpatients were reduced.32 However, 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.9,33-36 In addition, the hospitalisation of a child, whether planned or unplanned, is stressful for even the most well-organised and functional family.37 The significant adjustments to both parent and healthcare provider roles when a child is hospitalised may result in understandable levels of stress.38 Potential disadvantages of family-centred care may be that families 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. This may cause additional stress or anxiety for both the parents and child. In summary, in 1994, Darbyshire7suggested that family-centred care was a wonderful idea, but difficult to implement effectively, and some authors are beginning to agree, questioning family-centred care as a model of care35,39, and the ethics of continuing a model which is becoming increasingly described as ineffective are under scrutiny.40

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Other Models of Health Care for Children

Family-centred care, which involves participation of, or partnering with parents (or family-members) is described as different to the standard models of care used in paediatric health services. In these, 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.31

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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 little 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.11

Shields 41 conducted a Cochrane review of the effectiveness of family-centred care including RCTs, before and after and cohort studies from 1960 to 2004. However, there were no studies that either met the inclusion criteria of a family-centred intervention, or met the standard quality criteria of Cochrane Reviews.

An update of the Cochrane review was undertaken by Shields42 which examined randomised control trials from 2004 to December 2009. Five studies came close to inclusion, but none met the minimum score of family-centredness.

This review aims to examine any quasi-experimental studies on effectiveness of family-centred models of care for hospitalised children from 2004 to December 2009. Quasi-experimental design include studies in which participants are not randomly assigned to treatment conditions.

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Inclusion criteria

Types of participants

This review will consider studies that include all hospitalised children aged 0-12 years (but excluding premature neonates), their family and/or health providers.

Definition:

  • 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. 43 We have excluded studies about adolescents for similar reasons.
  • Families: throughout the review the following definition of the family was 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:

a) the members are related by blood, or marriage, or adoption, or by a contract which is either explicit or implied;

b) 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

c) they adopt or create and maintain common customs and traditions. This definition has been modified from Nixon's original definition44 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.

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Phenomena of interest

The review will consider studies that evaluate the effectiveness of family-centred models of care for hospitalised children when compared to standard models of care.

Any healthcare intervention that aims to promote the family-centred model of care during a child's hospitalisation will be examined. 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. Included studies must also have compared family-centred models with standard models of care.

Types of interventions could include:

  • Environmental interventions as evidenced by collaboration with the family and/or child in the design or redevelopment of facilities to provide an environment that maximises parental involvement and enhances child recovery and/or convalescence, care-by-parent units, privacy areas;
  • Family-centred policies which may include open visiting hours for siblings or extended family, parent participation in their child's care to the extent they choose (for example, feeding, bathing);
  • Communication interventions could include parental presence and participation at daily interdisciplinary ward rounds and family conferences to plan future care, developing collaborative care pathways where both parent and/or child and health carer document issues and progress, reorganisation of health care to provide continuity of care-giver (such as, primary nursing), shared medical records, local hospital based interpreters;
  • Educational interventions could include structured educational sessions for parents of technologically dependant children, continuing education programs to equip staff to provide care within a family-centred framework, preadmission programs;
  • Family support interventions such as flexible charging schemes for poor families, referrals to other hospital or community services (such as, social workers, chaplains, patient representatives, mental health professionals, home health care, rehabilitation services). 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 could include parental presence during health care procedures such as routine examinations, anaesthetic induction, venepuncture and post-anaesthetic recovery or bereavement team/protocols because singular interventions such as parental presence without any collaboration, communication etc. does not meet the holistic principles on which family-centred care is based. Studies which examine parental presence for a singular procedure, for the same reason, will also be excluded. As an example, parental presence for anaesthesia induction might occur in the operating room, but the same hospital might not let parents be involved in any other aspect of the child's care. Similarly, a study that examines parental presence for venepuncture is not studying family-centred care, rather only parental presence for a specific reason.
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Types of outcomes

This review will consider studies that include the following outcome measures:

Child

- Psychosocial outcomes including psychological health such as anxiety, confidence, sense of control, coping, adjustment, stress, upset, crying, insomnia, fears, behavioural regression, attitudes towards caregivers and attitudes towards rehospitalisation

- Behaviour outcomes such as level of co-operation, compliance with care, and appetite

- Physical health outcomes including physiological measures such as blood pressure and pulse rate; pain assessment or control such as use of medication or other means to reduce pain; length of hospital admission, readmission

- Developmental outcomes including weight gain, developmental milestones

- Knowledge outcomes including knowledge of condition, treatment, knowledge about personnel or procedure

- Satisfaction: for example, with involvement in decision making, with level of communication

- Attitudes: for example, views of cultural appropriateness, flexibility. Parent

- Psychological health (for example, stress, anxiety, perceptions of coping, sense of control) and satisfaction (for example, involvement in decision making, level of communication)

- Attitudes (such as complaints, evaluations of cultural appropriateness, flexibility and responsiveness of the intervention).

Staff

- Psychological health (for example, stress, responsiveness to patient's needs, confidence) and

- satisfaction (for example with the intervention, with care provided, with the level of education provided about family-centred care).

Health services

Health-service provision outcomes, such as staffing requirements, costs of the intervention, time needed for the intervention, use of other hospital department services, litigation claims.

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Types of studies

The review will consider Quasi-experimental studies for inclusion to enable the identification of current best evidence regarding the effectiveness of family-centred models of care on child, family and health service outcomes.

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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

the Cochrane Library (CENTRAL)

CSA Sociological Abstracts

The search for unpublished studies will include:

Web of Science Conference Proceedings

Australian Research Online

Clinical Trials Registry

Current Controlled Trails

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

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Assessment of the 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 Trivette 29(Appendix II). 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 Trivette29. The clusters were designed to be used to help describe the model of family-centred care in individual trials.

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, and a score of 42 (or 80% of total score) (see below) or greater would indicate a high degree of family-centredness.

We will assign degrees of family-centredness, using 80% as the cut-off point, above which the study would be considered as having a “high degree of family-centredness”. A score of 42 from a possible total of 52 (80%) was chosen as a cut-off point for inclusion/exclusion based on the Pareto distribution, which states that for many events, roughly 80% of the effects come from 20% of the causes.45 We made the next cut-off point 50%, making 50-80% “moderate degree of family-centredness”; and below 50% as a low degree of family-centredness. We plan to exclude studies with a family-centeredness score of less than 50%. 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.

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Assessment of methodological quality

Quantitative papers selected for retrieval will 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 Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) (Appendix I).

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Data collection

Quantitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-MAStARI (Appendix III).

The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

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Data synthesis

Quantitative papers will, where possible be pooled in statistical meta-analysis using the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). All results will be subject to double data entry. Odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed using the standard Chi-square. Where statistical pooling is not possible the findings will be presented in narrative form.

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Conflicts of interest

All authors work for institutions which have a stated policy of family-centred care. There is no potential conflict of interest.

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References

1. Nethercott S. A concept for all the family: family centred care, a concept analysis. Professional Nurse. 1993;8(12):794-797.
2. Alsop-Shields L. A comparative study of the care of hospitalized children in developed and developing countries. Brisbane: Department of Paediatrics and Child Health, University of Queensland; 1998.
3. Johnson B. The changing role of families in health care. Child Health Care. 1990; 19:234-41.
4. Bowlby J. Attachment and loss. Harmondsworth, UK: Penguin; 1971.
5. Bowlby J. Separation: anxiety and anger. Harmondsworth, UK: Penguin; 1973.
6. Platt H. The welfare of children in hospital. London: Ministry of Health, Central Health Services Council; 1959.
7. Darbyshire P. Living with a sick child in hospital: the experiences of parents and nurses. London: Chapman & Hall; 1994.
8. Jolley J, Shields L. The evolution of family-centred care. J Pediatr Nurs. 2009; 24(2):164-170.
9. Coyne I. Disruption of parent participation: nurses' strategies to manage parents on children's wards. J Clin Nurs. 2007; 12(23):3150-3158.
10. Palmer S. Care of sick children by parents: a meaningful role. J Adv Nurs. 1993; 18(2):185-191.
11. Allen RI, Petr CG. Rethinking family-centered practice. Am J Orthopsychiatry. 1998;68(1):4-15.
12. Coyne I, Cowley S. Challenging the philosophy of partnership with parents: a grounded thoery study. Int J Nurs Stud. 2006;44(6):89-904.
13. Neff JM, Eichner JM, Hardy DR, Klein M. American Academy of Pediatrics Committee on Hospital Care, Institute for Family-Centered Care policy statement: family-centered care and the pediatrician's role. Pediatr. 2003;112(3):691.
14. Irlam LK, Bruce JC. Family-centred care in paediatric and neonatal nursing: a literature review. S Afr Nursing J. 2002;25(3):28-34.
15. Shields L. A review of the literature from developed and developing countries relating to the effects of hospitalization on children and parents. Int Nurs Rev. 2001;48(1):29-37.
16. Stanford G. Central America: the state of psychosocial care in pediatrics. Child Health Care. 1986;15(1):32-9.
17. Mwangi R, Chandler C, Nasuwa F, Mbakilwa H, Poulsen A, Bygbjerg IC, et al. Perceptions of mothers and hospital staff of paediatric care in 13 public hospitals in Northern Tanzania. Trans R Soc Trop Med Hyg. 2008;102(8):805-10.
18. Aein F, Alhani F, Mohammadi E, Kazemnejad A. Parental participation and mismanagement: a qualitative study of child care in Iran. Nurs Health Sci. 2009;11:221-7.
19. Hutchfield K. Family-centred care: a concept analysis. J Adv Nurs. 1999;29(5):1178-87.
20. Webster PD, Johnson BH. Developing family-centered vision, mission, and philosophy of care statements. Bethesda, Maryland: Institute of Family-Centered Care; 1999.
21. Department of Health (Internet). Getting the right start: National Service Framework for children. c2003 (cited 2010 June 15). Available from: http://www.dh.gov.uk/assetRoot/04/06/72/51/04067251.
22. Coyne IT. Parent participation: a concept analysis. J Adv Nurs. 1996;23(4):733-40.
23. Hurst I. Facilitating parental involvement through documentation. J Perinat Neonatal Nurs. 1993;7(2):80-90.
    24. Hill YW. Children in intensive care: can nurse-parent partnership enable the child and family to cope more effectively? Intensive Crit Care Nurs. 1996;12(3):155-60.
    25. Kristensson Hallstrom I. Strategies for feeling secure influence parents' participation in care. J Clin Nurs. 1999;8(5):586-92.
    26. Costello A, Chapman J. Mothers' perceptions of the care-by-parent program prior to hospital discharge of their preterm infants. Neonatal Network: Journal of Neonatal Nursing. 1998;17(7):37-42.
    27. Evans MA. An investigation into the feasibility of parental participation in the nursing care of their children. J Adv Nurs. 1994;20(3):477-82.
    28. Shelton T, Jepson E, Johnson BH. Family-centered care for children with special health care needs. Washington, DC: Association for the Care of Children's Health; 1987.
    29. Trivette CM, Dunst CJ, Allen S, Wall L. Family-centeredness of the Children's Health Care Journal. Child Health Care. 1993;22(4):241-56.
    30. Ahmann E. Family matters: examining assumptions underlying nursing practice with children and families. Pediatr Nurs. 1998;24(5):467-9.
    31. Ahmann E, Johnson BH. Family matters: new guidance materials promote family-centered change in health care institutions. Pediatr Nurs. 2001;27(2):173-5.
    32. Melnyk B, Alpert-Gillis L, Feinstein N, Crean H, Johnson J, Fairbanks E, Small L, Rubenstein J, Slota M, Corbo-Richert B. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatri. 2004;113:e597-e607.
    33. Bruce B, Ritchie J. Nurses' practices and perceptions of family-centered care. J Pediatr Nurs. 1997;12(4):214-22.
    34. Bruce B, Letorneau N, Ritchie J, Larocque S, Dennis C, Elliott MR. A multisite study of health professionals' perceptions and practice of family-centered care. J Fam Nurs. 2002;8(4):408-29.
    35. MacKean GL, Thurston WE, Scott CM. Bridging the divide between families and health professionals' perspectives on family-centred care. Health Expect. 2005;8(1):74-85.
    36. Roden J. The involvement of parents and nurses in the care of acutely-ill children in a non-specialist paediatric setting. J Child Health Care. 2009;9(3):222-40.
    37. Melnyk BM. Intervention studies involving parents of hospitalized young children: an analysis of the past and future recommendations. J Pediatr Nurs. 2000;15(1):4-13.
    38. Callery P. Caring for parents of hospitalized children: a hidden area of nursing work. JAdv Nurs. 1997;26:992-8.
    39. Sarajarvi A, Haapamäki ML, Paavilainen E. Emotional and informational support for families during their child's illness. Int Nurs Rev. 2006;53(3):205-10.
    40. Shields L. Questioning family-centred care. J Clin Nurs. 2010; Accepted October 2009:in press.
    41. Shields L, Pratt J, Davis LM, Hunter J. Family-centred care for children in hospital. Cochrane Database Syst Rev. 2007;1.
    42. Shields L, Zhou H, Pratt J, Taylor M, Hunter J, Pascoe E. Family-centred care for hospitalised children aged 0-12 years. Cochrane Database Syst Rv. 2010; (In Press)Peer Review.
    43. Brophy M, Barrow C. Health problems of the neonate. In: Glasper EA, Richardson J, editors. A Textbook of Children's and Young People's Nursing. 1st ed. Edinburgh: Churchill Livingstone Elsevier; 2006. p. 623-636.
    44. Nixon JW. Family cohesion in families with an impaired child. Brisbane: Department of Social and Preventive Medicine, University of Queensland;1988.
    45. Narula A. What is 80/20 rule? 2008 (cited 2010 June 15). Available from: http://80-20presentationrule.com/whatisrule.html.
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    Appendix I JBI Critical Appraisal tools

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    Quasi-Experimental studies

    Table

    Table

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    APPENDIX II Family Centredness Score Form

    Table

    Table

    Table

    Table

    Instructions for Applying the Form

    Q1:

    Include any health care intervention that aims to promote the family-centred model of care during a child's hospitalisation. Only studies which provide clear evidence that the family and/or child were actively involved in the planning and/or delivery of healthcare during the child's hospitalisation will be considered for inclusion in this review.

    For the purposes of the review, the minimum criteria for active involvement will include 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. Included studies must also compare family-centred models with standard model of care.

    Types of interventions could include:

    • Environmental interventions as evidenced by collaboration with the family and/or child in the design or redevelopment of facilities to provide an environment that maximises parental involvement and enhances child recovery and/or convalescence, care-by-parent units, privacy areas;
    • Family-centred policies which may include open visiting hours for siblings or extended family, parent participation in their child's care to the extent they choose (for example, feeding, bathing);
    • Communication interventions could include parental presence and participation at daily interdisciplinary ward rounds and family conferences to plan future care, developing collaborative care pathways where both parent and/or child and health carer document issues and progress, reorganisation of health care to provide continuity of care-giver (such as, primary nursing), shared medical records, local hospital based interpreters;
    • Educational interventions could include structured educational sessions for parents of technologically dependant children, continuing education programs to equip staff to provide care within a family-centred framework, preadmission programs;
    • Family support interventions such as flexible charging schemes for poor families, referrals to other hospital or community services (such as, social workers, chaplains, patient representatives, mental health professionals, home health care, rehabilitation services), facilitating parent-to-parent support.

    EXCLUDE 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. Such studies could include parental presence during health care procedures such as routine examinations, anaesthetic induction, venipuncture and post-anaesthetic recovery, bereavement team/protocols, because singular interventions such as parental presence without any collaboration, communication etc does not meet the holism of FCC.

    Studies which examine parental presence for a singular procedure, for the same reason. As an example, parental presence for anaesthesia induction might occur in the OR, but there's nothing to say that the same hospital will let parents be involved in any other aspect of the child's care. Similarly, a study that examines parental presence for venepuncture is not studying FCC, rather it is only parental presence for a specific reason.

    Q2: Scoring Criteria for Family Centredness

    0 Article includes no evidence that the author(s) either implicitly or explicitly addressed, endorsed, or advocated adoption of adherence to the elements of FCC.

    1 Article includes a minimal amount of implicit evidence that the author(s) advanced adoption or support of the elements of FCC.

    2 Article includes numerous instances of implicit evidence that the author(s) advanced adoption or support of the elements of FCC.

    3 Article includes a minimal amount of explicit evidence that the author(s) advanced adoption or support of the elements of FCC.

    4 Article includes numerous instances of explicit evidence that the author(s) advanced adoption or support of the elements of FCC.

    Explicit evidence = an element was clearly stated and distinctly expressed

    Implicit evidence = If it could be inferred that the author(s) descriptions, arguments etc. were consistent with the intent of the elements of FCC

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    Appendix III JBI Mastari data extraction tool for all study designs.

    Table

    Table

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