Provision Of Family-centered Care Research Articles

Family-Centered Care for LGBTQ+ Parents of Infants in the Neonatal Intensive Care Unit: An Integrative Review.

Having an infant in the Neonatal Intensive Care Unit (NICU) can disrupt parent well-being, the transition to parenthood, and the typical trajectories of infant and child health. For lesbian, gay, bisexual, transgender, queer, or other sexual and gender minority identity (LGBTQ+) parents, this stress may be compounded by health disparities and fear of stigma and discrimination; however, research is lacking about LGBTQ+ parents of infants in the NICU. The purpose of this integrative review was to better understand the experiences of LGBTQ+ parents of NICU infants, with a focus on experiences of stigma and discrimination, sources of strength and resilience, and provision of family-centered care. We searched EBSCOHost, ProQuest, Web of Science, and Google Scholar between 30 May 2023 and 18 September 2023 for empirical studies published in English in peer-reviewed scholarly journals in which LGBTQ+ parents shared their experiences with having infants admitted to the NICU. We identified six articles that met inclusion criteria, all of which were qualitative studies that included 12-14 LGBTQ+ parents of NICU infants. LGBTQ+ parents in all studies reported instances of perceived stigma and discrimination while their infants were in the NICU, whereas parents in two studies mentioned strength and resilience, and parents in three studies described elements of family-centered care. There is a need for rigorous research on family-centered NICU care that includes questions about sources of strength and resilience in addition to challenges. We propose that future researchers use community engaged methods to center perspectives of LGBTQ+ parents.

Cultural Sensitivity in Family Research: Bridging Gaps

We are writing to address the crucial issue of cultural sensitivity in family research and the necessity to bridge gaps and expand horizons in this area. The significance of cultural sensitivity in family research cannot be overstated, as it plays a pivotal role in ensuring the provision of effective and inclusive family-centered care. This letter aims to synthesize and integrate relevant literature to underscore the importance of cultural sensitivity in family research and to advocate for the adoption of culturally sensitive approaches in this domain. The existing literature underscores the critical importance of cultural sensitivity in family research and the provision of family-centered care. The integration of culturally sensitive approaches in family research and healthcare practices is essential to bridge gaps and expand horizons, ensuring the inclusivity and effectiveness of services provided to diverse families. It is imperative for researchers, practitioners, and policymakers to prioritize cultural sensitivity in family research and healthcare to foster an environment of inclusivity and equity.

Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: A focus on service structure, service organization, and the barriers and facilitators of rehabilitation service provision

ABSTRACT To understand the systems underlying current rehabilitation models of care used with children and youth (0–21years) who sustain traumatic brain and/or spinal cord injuries. This study gathered qualitative data on service structures, service organization, and the barriers and facilitators of service provision in selected medical rehabilitation service(s) (MRS) and community-based rehabilitation service(s) (CBRS). Informants from 11 rehabilitation services were interviewed using a semi-structured interview guide. Interviews were analysed in NVivo using content analysis method. Experiences shared by the service representatives indicated that most services supported children and youth with brain injury, with a limited number also specializing in spinal cord injuries. MRS often delivered care in inpatient or outpatient settings, while CBRS offered home/community-based services. Care planning often started either prior to or shortly after admission from acute care settings, using either multidisciplinary or interdisciplinary teamwork models. Strengths of the services included innovation and provision of family-centred care; while challenges experienced included difficulty translating evidence into practice and poor team communication. Models of care were similar across services, with a focus on providing family-centred care. Several shared challenges were described, and service representatives expressed interest in forming partnerships and collaborations to address these challenges through innovative initiatives.

O58 - Symptoms of depression in parents after discharge from NICU associated with family-centred care

In 2018 to 2020, a multicentre cohort study was conducted in 23 NICUs across 15 countries. The aim of this study was to examine the potential association of family-centred care as perceived by parents during a NICU stay with parents’ depressive symptoms at discharge and at 4 months corrected for infant age. Parents ( n = 635 mothers, n = 466, fathers) of infants ( n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants’ hospitalisations. Parents’ perception of family-centred care in the NICU was assessed using the Digi-FCC (parent-version) tool with daily text messages and a questionnaire at discharge. Parent’s perception of depressive symptoms was also assessed using the Edinburgh Depression Scale: first at discharge and secondly when infants reached 4-months of corrected age. After controlling for gestational age, multiple birth, parent education and relationship status: an association was found between mothers’ and fathers’ perception of family-centred care, and their depressive symptoms at and after discharge. Parent perceptions of family-centred care was influenced by their ability to participate and make decisions about infant care, by the emotional support provided by staff members, and by other factors such as parental amenities and unlimited access for parents and significant others. Our study shows that family-centred NICU care associates with parents’ depressive symptoms after a NICU stay. Depression is common in parents of preterm infants. The provision of family-centred care may protect the mental well-being of parents of preterm infants.

The Role of Social Work in Residential Aged Care Facilities: Evaluation of a Pilot Program in Australia

In some international settings, social workers are employed within aged care settings. However, in Australia, social workers rarely work in residential aged care facilities. In an innovative program, an Australian health network employed a social worker in an aged residential care facility from 2010 to 2011. In this research we examine and evaluate this program. Qualitative semi-structured interviews with nine key stakeholders and data extraction from medical records were conducted. Data from medical records and interview transcripts were coded and themes extracted using thematic analysis. Thematic analysis identified five key themes reflecting the roles performed by the social worker. These were: (1) The importance of having an independent third party, (2) The provision of emotional support to residents, carers and families during the transition period, (3) The importance of role clarity, (4) The provision of family-centered care, and (5) Social work responses to potential difficulties which were preventative rather than reactive. The move into residential aged care can be an overwhelming, and in some cases, traumatic transition for residents and families. Results identified that timely and expert social work intervention can improve the transition process through the provision of counselling to effectively manage grief, loss, and psychosocial issues.

Symptoms of depression in parents after discharge from NICU associated with family-centred care.

AimsThe aim of this study was to examine the potential association of family‐centred care as perceived by parents during a NICU stay with parents’ depressive symptoms at discharge and at 4 months corrected for infant age.DesignA longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries.MethodsParents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants’ hospitalizations. They responded to Digi‐FCC daily text messages inquiring about their perception of family‐centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family‐centred care at discharge. Parents’ depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age.ResultsThe mothers’ and the fathers’ perceptions of family‐centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents’ participation in infant care, care‐related decisions and emotional support provided to parents by staff explained the variation in the parents’ perceptions of family‐centred care. The factors facilitating the implementation of family‐centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents.ConclusionsOur study shows that family‐centred NICU care associates with parents’ depressive symptoms after a NICU stay.ImpactDepression is common in parents of preterm infants. The provision of family‐centred care may protect the mental well‐being of parents of preterm infants.

Applying communication skills in the provision of family-centred care: a reflective account.

Providing family-centred care is fundamental to children's nursing and requires the development of therapeutic relationships with parents, notably parents of children who are acutely unwell. Gaining parents' trust and engaging them in their child's care involves the use of optimal verbal and non-verbal communication techniques. Children's nursing students need to develop skills and confidence in using these techniques. This article is a reflective account by a children's nursing student on how communication concepts and techniques learned at university can be applied to practice. The student had undertaken a theoretical and practical communication module during which she had been introduced to techniques such as active listening and the SURETY model shortly before starting a practice placement in an acute care setting. Here she uses the 'What?, So what?, Now what?' framework to reflect on and learn from her placement. The article demonstrates how complementing theoretical knowledge with experiential learning, and combining this with reflection on action, can enhance students' confidence to deliver family-centred care.

Mental Illness in the Family: The Experiences of Well Siblings of Young Adults with Mood and/or Anxiety Disorders

Current research on well siblings of individuals with mental illness focuses predominantly on adult siblings of individuals with schizophrenia, eating disorders, and psychosis. Few studies examine the experiences of young adult siblings of individuals with mood and/or anxiety disorders. We conducted focus groups with 21 post-secondary students, gathering their experiences of living with a sibling with mood and/or anxiety disorders. Our findings highlight the important role well siblings play in their sibling’s care, and the significant health and social impacts of living with a mentally ill sibling, particularly during adolescence. The needs of young adult well siblings of individuals with mood and/or anxiety disorders must be considered in the provision of family-centred care.

Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy

Study PurposeThe purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). Design and MethodsThis study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. ResultsNineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. ConclusionsOur analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. Practice ImplicationsThere are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.

What's in this Issue

What's in this Issue

New views on global child health: global solutions for care of vulnerable children in the United States.

This paper provides a brief overview of the current landscape of global child health and the impact of social determinants on the world's children. In the United States (US), global child health (GCH) has increasingly been highlighted as a priority area by national organizations, such as the National Academy of Medicine and American Academy of Pediatrics, as well as individual pediatricians committed to ensuring the health of all children regardless of geographic location. Although GCH is commonly used to refer to the health of children outside of the US, here, we highlight the recent call for GCH to also include care of US vulnerable children. Many of the lessons learned from abroad can be applied to pediatrics domestically by addressing social determinants that contribute to health disparities. Using the 'three-delay' framework, effective global health interventions target delays in seeking, accessing, and/or receiving adequate care. In resource-limited, international settings, novel health system strengthening approaches, such as peer groups, community health workers, health vouchers, cultural humility training, and provision of family-centered care, can mitigate barriers to healthcare and improve access to medical services. The creative use of limited resources for pediatric care internationally may offer insight into effective strategies to address health challenges that children face here in the US. The growing number of child health providers with clinical experience in resource-limited, low-income countries can serve as an unforeseen yet formidable resource for improving pediatric care in underserved US communities.

Hospital leadership perspectives on the contributions of Ronald McDonald Houses. Results from an international survey.

The purpose of this paper is to describe an international survey of hospital executives and administrators' perspectives on the contributions of their affiliation with a Ronald McDonald House (RMH) as an example of accommodation in family-centered care to the hospital's mission, operations and patient experience. RMHs worldwide provided the names and e-mail addresses of the people holding key leadership positions in their main hospital partner, who in turn were invited to complete an internet-based survey (530 participants; response rate of 54.5 percent). Hospital leaders reported very positive opinions about the contributions of their RMHs affiliation to their ability to serve seriously ill children and their families. This included such important outcomes as increasing family integrity and family participation in care decisions; and decreasing psychosocial stress and hospital social work resource burdens associated with lodging, food, transportation and sibling support. Hospital chief executive offices (CEOs) and medical directors reported very strong and positive opinions regarding the value-added of their RMHs affiliation in many areas, including enhanced marketing of hospital specialty services and reduced length of stay. Survey response bias is a limitation, although the results are still useful in terms of identifying multiple ways in which RMHs are perceived as contributing to hospitals' operations and provision of family-centered care. Overall, the results suggest that, internationally, hospital leaders believe that RMHs play a key and valued role in their provision of family-centered care to seriously ill children and their families. Family accommodation is more than the simple provision of lodging and plays an integral role how hospitals approach family-centered care. This international study contributes to the general literature on the role of family accommodation in hospitals' provision of family-centered care and the specific and very sparse literature on RMHs in particular.

G579(P) Parental perception of neonatal care

Context The improvement work was done in a neonatal unit inUK. It involved improvement in the care of newborns and included feedback from parents. Problem The survey was done to assess parent’s experiences of neonatal services, identify problems and get an understanding of how the quality of care can be improved. This helped us in developing a culture of continuous improvement that involves and is informed by parents, maintains high quality care for babies and their families and encourages the unit to continually raise the bar in provision of family-centred care. Study design A questionnaire was sent to parents whose babies were discharged home over 4 months from December 2013 to March 2014. Parents were ineligible for inclusion if the care of the baby was re-oriented, if the baby had been taken into care or discharged to a post-natal ward. The Patient list was identified from Badger net. A Questionnaire and letter of introduction was prepared in consultation with medical and nursing staff. The questionnaire was sent by post once the baby had been discharged. Parents were reminded by phone a week later. Responses were returned to the neonatal secretaries by post. Assessment of problem and analysis of its causes It was encouraging to see parents reporting positive experiences. There were problems which were identified from the feedback. The problems identified were parents were given inconsistent feeding plans and strategies from nursing staff, majority of parents of babies transferred to or from the unit felt the need to be with their baby during transfer, parents are asked to leave the ward during ward rounds to protect other babies’ confidentiality and then usually relied on the nurses for feed back, it was felt by parents that the unit was outdated, overcrowded and stressful – “not fit for purpose” and parents coming from outside the city felt the need for a day room and space for families. This will encourage their involvement in the care of their babies. Strategy for change New NHS trust infant feeding policy and guidelines were formulated. Nursing staff were trained in regard to the policy. There is a need for a full-time breast feeding nurse, If possible, parents will accompany their baby on transfers, an improvement tree was placed in the unit for parents. This is easy to access and will help parents to comment on their experience and offer suggestions, parents will be encouraged to remain with their baby during ward rounds. This will help to involve them in the care of their baby and to update them, parents of babies who are likely to be in the unit for a prolonged time will also be given weekly updates by senior medical staff and plans for a new Women’s hospital (2020) are underway and a parent focus group will be involved in the project to ensure their needs are met. Measurement of improvement The survey will be repeated to see the effect of changes in strategy. Outcomes which have been encouraging have also been monitored by monitoring feeding policy and breastfeeding rates through Badger net and positive feedback from parent comments on the improvement tree. Lessons learnt and message for others Most parents would like to be present during ward rounds; an opportunity to be updated by medical and nursing staff and allows them to be more involved in the day to day care of their baby; an improvement tree is a good way of getting feedback on a regular basis; Neonatal unit is a stressful environment and parents would benefit from a Day room and where possible, parents should be transported with their babies.

What is the Evidence and Context for Implementing Family-Centered Care for Older Adults?

ABSTRACTAims: This project used the Promoting Action on Research Implementation in Health Services (PARIHS) knowledge translation framework to better understand the evidence and context for implementing family-centered care for older adults in rural home-based rehabilitative practices. Methods: A case-study design with multiple data collection methods was used to examine rural home-based rehabilitative care for older adults and their caregivers within one provincial healthcare system. Results: The study findings indicated therapists questioned whether their scope of practice should include addressing caregiver needs outside of implementing the therapist's care plan for the client. Therapists also confirmed that multiple contextual levels influence the provision of family-centered care. Conclusions: The PARIHS framework made it easier for the academic and non-academic partners to collaborate; furthermore, the framework identified that the practitioner's clinical experience is an essential component to evaluating and implementing evidence into practice.

Managing Collateral Disability in the Disability Continuum

Emotional responses of parents of children with physical disabilities are not clearly addressed in the disability definition and therefore rarely addressed in the course of assessment and management of the disabled patient by the physiotherapists. In the provision of family-centred ca re for disabled persons, the i mpact of disablement on every member of the family including carers should be reviewed. This would assist in furthering the bio-psychosocial model of care. This paper briefly outlines the most common emotional responses and collateral disablement experienced by parents of children with disabilities (CWD) and the implications of this to physiotherapy in the family-centred care.

Family-centred care delivery: comparing models of primary care service delivery in Ontario.

To determine whether models of primary care service delivery differ in their provision of family-centred care (FCC) and to identify practice characteristics associated with FCC. Cross-sectional study. Primary care practices in Ontario (ie, 35 salaried community health centres, 35 fee-for-service practices, 32 capitation-based health service organizations, and 35 blended remuneration family health networks) that belong to 4 models of primary care service delivery. A total of 137 practices, 363 providers, and 5144 patients. Measures of FCC in patient and provider surveys were based on the Primary Care Assessment Tool. Statistical analyses were conducted using linear mixed regression models and generalized estimating equations. Patient-reported FCC scores were high and did not vary significantly by primary care model. Larger panel size in a practice was associated with lower odds of patients reporting FCC. Provider-reported FCC scores were significantly higher in community health centres than in family health networks (P = .035). A larger number of nurse practitioners and clinical services on-site were both associated with higher FCC scores, while scores decreased as the number of family physicians in a practice increased and if practices were more rural. Based on provider and patient reports, primary care reform strategies that encourage larger practices and more patients per family physician might compromise the provision of FCC, while strategies that encourage multidisciplinary practices and a range of services might increase FCC.

Expanded Care for Women and Families after Preterm Birth

Prematurity is a complication of pregnancy for 1 in 8 families in the United States. The focus of care after preterm birth shifts to the fragile newborn, while the needs of the woman and her family may be overlooked. There are many challenges for parents, including impaired parent-newborn attachment, difficulties with breastfeeding, postpartum mental health, and family disruption. Premature birth may even risk the developing relationship between parents and their child. Comprehensive care is recommended for parents who have experienced a preterm birth, including support of effective lactation, promotion of skin-to-skin care, reflection on the birth experience, support and evaluation of postpartum mental health, and provision of family-centered care. Preconception care after preterm birth needs to include guidance about the recurrence risk for preterm birth as well as recommendations for risk reduction.

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

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.) 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. TRUNCATED AT 350 WORDS

Comparison of Family and Therapist Perceptions of Physical and Occupational Therapy Services Provided to Young Children with Cerebral Palsy

ABSTRACTThe purpose of this study was to determine whether parents and therapists have similar perceptions of therapy services provided to young children with cerebral palsy (CP), reflecting collaboration and provision of family-centered care. Forty-six parents of young children with CP and 40 therapists providing services for those children participated. Parents and therapists independently completed the same Services Questionnaire, indicating their perceptions of the focus and extent of the children's therapy services. For data analysis, answers to survey questions were combined into seven categories of items with a similar focus. The Spearman rho correlations and Wilcoxon signed-rank tests were used to explore relationships and differences between the ratings of parents and therapists. No significant correlations were found for the seven categories. Significant differences between ratings for five of the seven categories were identified, indicating parents and therapists differed in their ratings of the focus of therapy interventions. Based on the findings, suggestions for improvement in the provision of family-centered care are provided.

Social Worker Interventions in Situations of Domestic Violence: What We Can Learn from Survivors' Personal Narratives?

Social workers are an integral provider in the statutory support offered to women experiencing domestic violence. This paper uses information obtained from women's personal narratives to examine this social worker–client relationship in situations of domestic violence. Embracing a feminist standpoint epistemology and focusing on the women's experiences, it is evident that many of the women expressed dissatisfaction with the way they were treated by social workers. Threats to remove the children from the home and victim blaming were among the tactics described. The parallel between such reported forms of coercion employed by social workers and those used by the abuser are striking. The findings suggest a lack of a favourable climate to ensure the safety of the woman and her family through the provision of family-centred care and a need to build more effective and supportive relationships with women experiencing domestic violence. Implications for social work practice are also discussed.