Family-Centred Care for Children with Biopsychosocial Support Needs

Version	Summary	Created by	Modification	Content Size	Created at	Operation
1		Lizz Carrington	+ 2401 word(s)	2401	2021-10-14 04:39:26	\|
2	revised	Camila Xu	-44 word(s)	2357	2021-12-23 06:34:56	\|

This entry is adapted from the peer-reviewed paper 10.3390/disabilities1040022

Family-centred care is associated with improved health and well-being of the child, improved parental reports of satisfaction of care, greater efficiency of health care resources, increased access to care, better family-provider communication and better transition services. Descriptions and principles of family-centred care are well established but there are very few specific definitions and a systematic review by Kuhlthau et al. noted the need to more clearly define and operationalise family-centred care.

family-centred care paediatric biopsychosocial needs healthcare outcome measures

1. Introduction

Children’s physical, psychological and social health and wellbeing are influenced by a complex interaction of biology and social determinants (biopsychosocial factors). A significant proportion of children globally have lived experience of impairment and/or long-term health conditions with an estimated 15% of the world’s population living with a disability ^[1]. This includes a speculative 93 million children between the ages of 0–14 years worldwide, although this number must be interpreted cautiously due to variable definitions of disability and data collection methodologies internationally ^[2]. Children with disabilities may be defined as those “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” ^[3] (p. 3). The World Health Organisation’s International Classification of Functioning, Disability and Health (ICF) ^[4] emphasises that disability is a “dynamic interaction between health conditions and environmental and personal factors”. In addition to physical needs, children’s health and wellness are subject to social and environmental inequities with poorer children having poorer health and developmental outcomes ^[5]. Children with additional biopsychosocial needs may require support to maintain an optimal state of health or wellness to ensure their full participation in society. Family-centred care is considered best practice in providing health care services to children and families ^[6] as families have an integral role in a child’s life experiences and participation opportunities ^[7] and are a contextually integral component of the environmental factors of the ICF model.

Family-centred care is a model of healthcare characterised by; a respectful family-professional partnership ^[8] that fosters collaboration between all involved parties ^[9]^[10], that includes family members in the delivery of the child’s treatment ^[9] and involves parents as co-decision makers in their child’s care whenever possible ^[11]. King and Chiarello ^[12] described three core concepts of family-centred care as, (1) respect for children and families, (2) appreciation of the family’s influence on the child’s well-being, and (3) family-professional collaboration as core beliefs for family-centred care. Family-centred care is a biopsychosocial model that recognises that the health and wellness of everyone are influenced by a complex interconnection between biology, psychology and social factors. In family-centred care, the unit of care includes not only the individual (child) but also their family ^[13]. Qualitative studies suggest that family-centred care provides versatile support that can be used within our healthcare, education and social systems ^[14].

A 2019 scoping review by Kokorelias et al. ^[15] reporting original models of family-centred care highlighted the lack of concrete strategies in the literature to help implement key concepts and noted the paucity of research on family-centred care model implementation ^[15]. Kuo ^[9] also reported a lack of consensus on the specific processes and actions that constitute family-centred care and fundamental misunderstandings regarding implementation. Similarly, Uniacke ^[16] purported the need for a better understanding of family-centred care requirements. Since family-centred care is therefore somewhat open to interpretation, ambiguity may arise, and interventions will often include some but not all the characteristic principles ^[9]. Adding to the complexity is the heterogeneous nature of the populations of both children and health professionals involved in family-centred care, as well as the diverse nature of families, all of which influence the ideals of care. Best practice indicates that an inter-professional approach is necessary to provide support to the child with complex biopsychosocial needs ^[17]. However, without consistent guidelines or processes, there is the potential for varying applications of family-centred care when used inter-professionally. This may lead to siloed management and less than ideal service provision and outcomes for children with biopsychosocial needs, which could be considered another disabling element of society for these children.

The ICF is a biopsychosocial model that is an international standard for describing health and disability ^[18]^[19]. The ICF provides a framework and classification system to understand and describe outcomes and changes in health and functioning and may be used to map outcome measures for an individual’s functioning ^[18].

2. Paucity of Demographic Reporting and Definitions of the Family Unit

Family demographics were poorly defined and lacked detail with regards to both the primary caregiver and the family. For example, demographic information on the Mother’s employment status was mostly reported as part-time or described as homemaking, however, studies failed to explore the Mother’s choice to work in this capacity and made no speculations on whether this was a reflection of the time required to care for their child. Caregiving responsibilities may create a financial burden as illustrated by the AARP Public Policy Institute description of 69% of working caregivers caring for a family member having reported as changing, decreasing or leaving their work to meet their caregiving responsibilities ^[20]. Similarly, the National Alliance for Caregiving and AARP Public Policy Institute reported that 39% of caregivers leave their job to have more time to care for a loved one ^[21], and 45% of family caregivers have had at least one financial impact ^[22]. Therefore, understanding the impact on the primary caregiver’s employment from factors such as time required for their child’s appointments and therapies and general caregiving tasks may provide a greater understanding of the psychosocial stress the caregivers are under. Formal definitions of ‘family’ were also lacking in the literature, making it unclear whether there was a lack of family inclusion within the interventions or rather paucity of reporting. Without clear identification of immediate and (where appropriate) extended family members it is difficult to understand how they are integrated into the family-centred care model. Sibling demographics may be considered particularly important as they provide a unique opportunity for peer modelling. A systematic review and meta-analysis by Kracht and Sisson ^[23] noted the importance of siblings as motivators for participation in activity and sports and in modelling health habits. Ascertaining sibling’s ages and activity preferences may inform the implementation of an intervention in a home setting and facilitate sibling collaboration. Variations in family relationships should also be explored as they may lead to different psychosocial challenges, for example, a systematic review by Arakelyan et al. ^[7] illustrated that living in a single-parent family was consistently associated with decreased participation in leisure activities. It is undoubtedly important to consider the child at the centre of the family-centred care model care, but also essential to understand their family and consider the influences they will bring to the home environment and their capacity to enable the intervention. Analysis of the family may also highlight supports for family members that are necessary for successful implementation of the intervention.

3. Processes of Implementing Family-Centred Care Interventions

Significant variation existed between the processes of family-centred care models due to the extremely diverse population of children included in the studies and health professionals or support persons acting as facilitators. Interventions were primarily delivered in the health care setting related to the facilitating health professional. However, the location for family-centred care interventions should be guided not only by the facilitator but should include environments in which children and families feel at ease and in which they may experience a wide range of benefits, including increased participation and enjoyment. A systematic review by Thompson Coon et al. ^[24] reported that the benefits of exercise in outdoor natural areas are holistic and include associations with increased energy, enhanced mental well-being and greater intent to repeat the activity. As interventions mostly focused on implementing theoretical key attributes of family-centred care, meaningful environments for the families were not explored and there was a failure to address potential barriers such as accessibility or facilitators such as ease of use or familiarity. Factors such as proximity to the home, benefits of nature, use of outdoor spaces, holistic health, accessibility and community engagement may also be important considerations but were not evident in this review.

4. Outcome Measures Used in Family-Centred Care Studies

Holistic qualitative outcomes relating to participation, family empowerment and child/family goal achievement, which are arguably closer to the core of family-centred care, were under-reported in this review. Synthesis of the literature illustrated a strong focus on the measurement of impairment (body structure and function limitations), followed by person-centred outcomes and a correspondingly limited focus on participation and activity outcomes. Several influences on outcome measures emerged including, the biopsychosocial need of the primary caregiver and the philosophy and purpose of the intervention.

Studies in which psychological measures were used mostly focused on the biopsychosocial need of the primary caregiver rather than the child. In addition, parental anxiety emerged as an influencing factor that reflects the psychological caretaking burden reported by O’Neil et al. ^[25] for parents of children with physical disabilities. A literature review by Wang and Barnard ^[26] focusing on children dependent on long-term medical and technical support reported parent’s mental and physical “overburden” for a multitude of reasons including, stress and insomnia from worry, financial concerns and physical exhaustion due to direct care of their child. These findings highlight that outcome measures of stress/anxiety or depression may relate to the biopsychosocial needs of the family not just those of the primary caregiver. Another influence on outcome measure choice is the philosophy of the intervention which guides the purpose of the study and associated research question. Studies that seek to determine the effectiveness of interventions relating strictly to health condition, body, structure or function will require the use of validated quantitative outcome measures. Conversely, if the philosophy of the study seeks to identify what is most meaningful and important to the family, the ICF model may be used to guide the purpose of the study and research question which may result in measures of participation and activity. This can naturally lead to the use of more qualitative outcomes and provide an important additional lens on the value of the treatment for the participants.

5. Implications for Practice

The lack of concrete strategies to implement the key attributes of family-centred care in the real world ^[15] indicates the need for a guiding framework for family-centred care implementation as presented in the results. The framework for the processes of implementing family-centred care has important implications for practice as it incorporates both existing and new key attributes of family-centred care as identified by the thematic analysis of this review and illustrates a variety of possible processes to put these into action.

The framework highlights the need to clearly define who is involved in the model of family-centred care and emphasises that all parties should be adequately described. This will allow for the needs of the whole family (including siblings and extended family where relevant) to be identified and enable family-centred care interventions to be tailored to the child and their family. Furthermore, this process paves the way for the family’s meaningful goals to be mapped to the ICF model to inform the purpose of the intervention and guide the choice of outcome measures. Quantitative outcome data can be used to justify funding/policy change, however, application of the ICF model may also highlight areas of activity or participation that are important to the family, in which case qualitative outcomes may be best suited to demonstrate improvements. The environment of the intervention should be guided by the family who may wish to use familiar locations, thus interventions may move away from primary care settings into broader spaces, for example enjoying nature as a family and enabling incidental exercise. The framework leads the user to clearly define whether the child is included in ‘family goal setting’ and it is imperative that goal-setting collaboration extends to include the child where at all possible. At times the child’s age or competency may exclude them from an independent goal-setting process or when both parties are included, children and parents may sometimes express different goal-setting priorities, which will necessitate strategies to reach a compromise. As identified in the framework, it is important to prepare the facilitator of family-centred care and processes may include formal training, written materials, supervision or equipment instructions. Family–family collaboration and support should also be facilitated via support/discussion groups and is a newly identified key attribute of family-centred care. However, the concept of mothers supporting mothers is not unique to this review with a meta-analysis by Dunst et al. ^[27] also noting the value of such mutual support. Workshops or group sessions with families in similar circumstances may help with information sharing and provide families with a sense of solidarity and a feeling of being understood. Thought should be given to the accessibility of the intervention location, funding for the intervention and/or additional support networks. Future studies can use this framework to provide a systematic approach to choosing key attributes and processes to include in family-centred care interventions to decrease heterogeneity between studies.

6. Strengths and Limitations

This study included articles from the past 15 years and was restricted to those published in English with an available full text, thus excluding examples of family-centred care outside of these limits. Also, the broad scope of this review and emergent nature of family-centred care intervention implementation and heterogeneous nature of the population of children with biopsychosocial needs made it difficult to draw comparisons between the included studies. Synthesis of the results led to the creation of a new framework for family-centred care model implementation based on thematic analysis; however, the search was limited to a paediatric population, therefore application to other populations such as older adults with dementia or young adult populations may not be automatically inferred.

A strength of this scoping entry was the comprehensive synthesis of an extremely complex and diverse population. The inclusion of a wide range of databases and methodical framework allowed for a comprehensive search across many disciplines. This review adds to the knowledge base of family-centred care and builds on that of previous authors. Furthermore, it presents a working framework for implementing the processes of family-centred models of care which has the potential to enhance future practice and research.

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