Experiences Of Family-centred Care Research Articles

Medication Decision Making in Low-Income Families of Black Children With ADHD: A Mixed Methods Study

Objectives: The purpose of this study was to explore how and why some low-income Black caregivers seek medication treatment for their children with ADHD. Methods: Using a sequential exploratory mixed method design, Phase 1 comprised an indepth case study design of seven low-income Black caregivers of children receiving medication for ADHD. Based on findings from Phase 1, the second phase involved a secondary analysis of data on Black uninsured or publicly insured children age 6 to 17 with ADHD (n = 450). Results: Factors influencing medication decision-making included child safety and volatility, caregiver mental health, caregiver aggravation, family centered care (FCC), shared decision making (SDM), sole caregiver status, and school involvement. After adjusting for ADHD severity, previous receipt of special education services and experiences of FCC and SDM were independently associated with receipt of a medication for ADHD. Conclusions: Clinicians and school personnel can intervene to decrease disparities in the treatment of ADHD.

The Practices of Family-Centered Care for Hospitalized Children: Comparison of Iranian Mothers and Nurses' Perceptions

Background: Family-centred care (FCC) practices are challenging from the perspectives of both parents and health professionals. Purpose: This study aimed to compare experiences with FCC practices between Iranian mothers and nurses. Design and Methods: This comparative cross-sectional study was conducted in 2019 on 233 mothers with hospitalized infants or children and 233 nurses working in neonatal intensive care units or pediatric wards selected using convenience sampling at five hospitals in Iran. Data regarding experiences about FCC practices among mothers and nurses was collected through the Perceptions of FamilyCentered Care-Parent (PFCC-P) and the Perceptions of Family-Centered Care-Staff (PFCC-S) questionnaires containing the three subscales of Respect, Collaboration, and Support and 21 similar items. Descriptive and inferential statistics were utilized for data analysis using the IBM SPSS Statistics software. The significance level was set as p<0.05. Results: The mean and standard deviation of mothers' and nurses' experiences of FCC were 2.68±0.53 and 3.05±0.39; respectively (range, 1–4). The lowest score belonged to the subscale “respect.” There was a statistically significant difference between mothers and nurses in their experiences with FCC practices in all three subscales. The nurses reported more positive experiences with FCC practices than the mothers did (p<0.001). Conclusion: The mothers and nurses exercised FCC differently and nurses' experiences were more positive. Reasons behind the difference in mothers' and nurses' experiences with FCC practices should be investigated. Interventions are required to remove barriers associated with FCC practices in accordance with healthcare in Iran.

Expectant fathers’ experiences of family-centred births in Estonia: a qualitative study

ObjectiveOne of the aims of family-centred care is to provide expectant fathers with positive experiences during childbirth, so they can support their partners and bond with their new baby. However, research in this area has been limited. This study described men´s experiences with family-centred births in Estonia, Northern Europe. DesignQualitative study with open-ended interviews that were audio taped and analysed by inductive content analysis by Elo and Kyngäs (2008). SettingBirth units at one central and one regional hospital in Estonia. ParticipantsTwelve Estonian fathers aged 22-44, interviewed 4-12 weeks after their baby's birth. Key conclusionsFathers’ experiences of family-centred care during their baby's birth focused on their transition to fatherhood, their experiences of birth as a multifactorial life event and the experiences they shared with other fathers. They discussed supporting their partners during the birth, their involvement in decision making, the attitudes of healthcare professionals and how their role in the family changed. The fathers said that the birth was a private and public event, where their own role, and the roles of healthcare professionals, were confusing. This made family-centred care difficult during the birth. Sharing experiences with other fathers decreased their fears and increased their understanding of becoming fathers. Some fathers were not ready for fatherhood and midwives needed to assess how involved fathers wanted to get during the birth. Implications for practiceFamily-centred care is important during birth, but more research is needed into how fathers see their role. The roles played by medical staff also need to be clearer. Better knowledge about what fathers expect and need, can help midwives to involve and support them at a level they feel comfortable with. Peer support can play a vital role in preparing fathers for birth and fatherhood.

The Parents', Hospitalized Child's, and Health Care Providers' Perceptions and Experiences of Family-Centered Care Within a Pediatric Critical Care Setting: A Synthesis of Quantitative Research.

Family-centered care (FCC) purports that unlimited presence and involvement of the family in the care of the hospitalized child will optimize the best outcome for the child, family, and institution. A systematic appraisal was conducted of peer-reviewed, English-language, primary quantitative research conducted within a pediatric critical care setting reported from 1998 to 2014. The aim of this review was to explore the parents', hospitalized child's, and health care providers' perception of FCC within pediatric critical care. Fifty-nine articles met the criteria that generated themes of stress, communication, and parents' and children's needs. This review highlighted that communication tailored to meet the parents' and child's needs is the key to facilitating FCC and positive health outcomes. Health care providers need to be available to provide clinical expertise and support throughout the health care journey. Future initiatives, education, and research are needed to evaluate the benefits of parent- and child-led FCC practice.

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities.

Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010-2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants' responses as strengths in the "most of the time" range, and weaknesses in the "never" range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

Mothers’ perceptions of family centred care in neonatal intensive care units

ObjectiveTo explore mothers’ perceptions of family centred care (FCC) in neonatal intensive care units (NICUs) in England. DesignThe qualitative experiences of 12 mothers from three NICUs in the UK were elicited using individual interviews. A thematic network analysis was conducted on the transcribed interviews Main outcome measuresA central global theme supported by a number of organizing themes were developed reflecting the views of the mothers and their experiences of FCC. ResultsA global theme of “Finding My Place” was identified, supported by six organizing themes: Mothering in Limbo; Deference to the Experts; Anxious Surveillance; Muted Relations, Power Struggles and Consistently Inconsistent. Mothers experienced a state of liminality and were acutely sensitive to power struggles, awkward relationships and inconsistencies in care. To try to maintain their equilibrium and protect their baby they formed deferential relationships with health professionals and remained in a state of anxious surveillance. ConclusionsThis study illustrates that despite the rhetoric around the practice of FCC in NICUs, there was little in the mother's narratives to support this. It is of the utmost importance to minimize the consequences of the liminal experience, to improve staff–mother interactions and to facilitate mothers’ opportunities to be primary caregivers.

Improving family-centered care practices in the NICU.

Family presence and participation in care in the NICU is fundamental to the recovery and well-being of the sick neonate and family. However, some NICU visitation policies are not supportive of families. A new visitor-management program was initiated at a local hospital. The program included open visitation for parents and others chosen by parents to be a support during their hospital stay. This quality-improvement project evaluated if there was any improvement in parents' perceptions and experiences of family-centered care after the implementation of the new visitor-management program. The NICU parent survey data revealed a modest positive difference in parent responses after the implementation of the program.

Family‐centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology

Over the past two decades, there is increasing emphasis being placed upon providing family-centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post-diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line-by-line, focused and theoretical coding, and the use of the constant comparison method. Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co-ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health-related information directly with their child. In order to successfully provide family-centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.

Information and professional support: key factors in the provision of family‐centred early childhood intervention services

Much has been written on the principles of family-centred practice and on the service delivery methods and skills required of its practitioners. Far less has been written from the perspective of families whose children have a disability. The aims of this study were twofold: firstly to understand families' experiences of family-centred early childhood intervention services and secondly to explore other factors that might impact on these experiences. One hundred and thirty families attending two established early childhood intervention services in New South Wales, Australia completed a survey incorporating the Measure of Processes of Care-56, the Family Empowerment Scale, the Family Support Scale and the Parenting Daily Hassles Scale. Consistent with previous research using the Measure of Processes of Care-56, 'respectful and supportive care' was the domain of care families rated to occur most and 'provision of general information' was the domain they rated to occur least. Significant positive relationships existed between families' ratings of family-centred care and feelings of empowerment. Being provided with general information was strongly correlated with family empowerment. Families' social support networks played an important role but support from professionals was most strongly correlated with families' experiences of family-centred care. Finally, families whose children's early intervention services were co-ordinated by a professional experienced significantly better care. The provision of general information and professional support are key components of family-centred early childhood intervention services.

Family‐centred care and health‐related quality of life of patients in paediatric neurosciences

Little is known about the influence of contextual factors such as health services characteristics on health-related quality of life (HRQL) for children with a neurological condition. To address this gap, we conducted an exploratory study of the relationship between family-centred care (FCC) and HRQL outcomes in children from neurosciences clinics in a large acute care hospital. A total of 187 family caregivers completed questionnaires regarding their socio-demographic status, the severity of their children's condition (FIM), perceptions of their children's HRQL (PedsQL 4.0) and their experiences of FCC (MPOC-20). Hierarchical regression analyses explored the hypothesis that FCC is a significant predictor of children's HRQL, independent of illness severity. Illness severity and FCC jointly explained one-third of the variance in children's total HRQL. When FCC was controlled for illness severity, it remained a significant predictor of physical, psychosocial and total HRQL scores. This study provides evidence that the level of FCC is positively related to paediatric HRQL independent of neurological illness severity. The implication is that the uptake of FCC practices by service providers can positively impact the quality of life of children with neurological disorders.