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

Background 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. Methods 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. Results 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. Conclusions 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.     

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi‐structured interviews were conducted with 50 young people with CF aged 13–24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people’s homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non‐clinical practical and emotional support; (2) Acting as ‘troubleshooters’ in times of health‐related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as ‘protectors’ of their children. Young people and service staff expressed tensions in managing parental involvement in post‐paediatric consultations and the degree to which parents should be aware of their offspring’s deteriorating health and social concerns. Parental anxiety and over‐involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these ‘new’ ageing populations.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Home level bureaucracy: moving beyond the ‘street’ to uncover the ways that place shapes the ways that community public health nurses implement domestic abuse policy

Street‐level bureaucracy is an increasingly useful way to understand how strategic policy is implemented in day‐to‐day practice. This approach has uncovered the ways that individual health and social care practitioners work within institutional constraints to influence policy implementation at the micro‐level. Nonetheless, despite the diversity of settings where these street‐level bureaucrats (SLBs) work, little attention has been focused on the impact of place on policy delivery. This paper draws on empirical research to examine the ways that delivering government domestic abuse policy in the intimate space of the family home shapes the delivery of strategic policy in the everyday. Drawing on qualitative research with Health Visitors (HVs) in the UK in 2016, the study findings illuminate the ways that the material, socio‐spatial and idealised boundaries of the family home shape the implementation of policy. Key themes in the HV's narratives emerged as they described themselves as both a danger and in danger in the family home. In challenging the ontological security of the home (Giddens 1990) – privacy, security and control are key concepts here – HVs described how they shape their actions to achieve policy outcomes while simultaneously managing threats to the home, to professional identity and to self.     

Development and implementation of a paediatric rehabilitation care path for hard‐to‐reach families: a case report

Service providers, policy makers and researchers are increasingly concerned with service provisions for hard‐to‐reach families. These are defined as families who are eligible for a service, but are difficult for service providers to identify or engage. In our setting, hard‐to‐reach families were those who missed appointments without prior notice, a problem that was inefficient for the organization, frustrating for clinicians and did not meet child or family needs. This case report describes the development of a care path to promote engagement with hard‐to‐reach families (MATCH: Making Alternative Therapy Choices Happen) and its adoption among clinicians within a community‐based paediatric rehabilitation centre in Ontario, Canada. The care path was developed and implemented at a pilot site at KidsAbility Centre for Child Development (KidsAbility), which allowed us to tailor the care path using clinician input via questionnaires, and to monitor use of the care path. Following pilot implementation clinicians reported being satisfied with the approach and perceived improved child and family outcomes. The care path was expanded to four service sites using a Knowledge Brokering model. After training, clinicians reported a good understanding of the care path: 87% felt that they would have an opportunity to use it within six months, however only 68% felt ready to use it. Challenges to offering MATCH and continuing training preferences were investigated. The MATCH care path illustrates a practical application of the principles of best‐practice for engaging hard‐to‐reach families, tailored for a specific paediatric rehabilitation setting. Continued research is planned to further define the hard‐to‐reach families within paediatric rehabilitation, determine how hard‐to‐reach families view engagement in services, and evaluate the effectiveness of MATCH implementation in reducing missed appointments and promoting family engagement in paediatric rehabilitation services.     

Placing care: embodying architecture in hospital clinics for immigrant and refugee patients

This article is part of a hospital ethnography that investigates healthcare architecture as an aspect of an increasingly large, complex, and urgent global health issue: caring for refugees and other immigrants. It argues that hospitals are nodes in transnational social networks of immigrant and refugee patients that form assemblages of human and non‐human objects. These assemblages co‐produce place‐specific hospital care in different hospital spaces. Place‐specific tensions and power dynamics arise when refugees and immigrants come into contact with these biomedical spaces. The argument is developed by analysing waiting rooms and exam rooms in two outpatient clinics in one US hospital. The article draws its analysis from 9 months of fieldwork in 2012 that included following 69 adult immigrant and refugee patients and observing their encounters with interpreters and clinic staff. Its inclusion of a transnational dimension for understanding place‐specific hospital care adds conceptual and empirical depth to the study of how place matters in 21st century hospitals.     

Parenting stress in US families: implications for paediatric healthcare utilization

Objective According to family stress models, parental responses to stress disrupt interactions between parent and child and may lead to parental inability to seek timely medical care for their child. The objective of this study was to quantitatively assess the relationship between high parenting stress and child healthcare utilization. Methods We used the 2003–2004 National Survey of Children's Health to determine the prevalence of parenting stress in US families and associated socio‐demographic variables. We used weighted logistic regression to investigate associations between parenting stress and healthcare utilization, controlling for other parental psychosocial and socio‐demographic variables. The primary independent variables were parenting stress, parental mental health, parental coping and social support. The main dependent variables were emergency care, sick visits to primary care and preventive care in the past 12 months. Results Nationally, 13% of children lived in households with at least one parent experiencing high parenting stress. Socio‐demographic variables associated with the highest odds of parenting stress included Black race, special needs status and non‐English primary language. Parents with high parenting stress had a higher odds (adjusted odds ratio 1.24, 95% confidence interval 1.10–1.41) of seeking emergency care for their children compared with parents with low parenting stress, controlling for other parental psychosocial factors and socio‐demographic variables. Conclusions Having a parent who is experiencing high parenting stress is associated with greater utilization of paediatric emergency care. Interventions targeted at parenting stress may provide families with needed support and reduce unnecessary emergency care utilization.     

Hais cuaj txub kaum txub—To Speak of All Things: A Hmong Cross-cultural Case Study

Cross-cultural medicine is a field that describes how disparate value and belief systems concerning health and disease affect the delivery of health care. This report describes the conflict between a Hmong immigrant family and the Western medical establishment over the care of their child with end stage renal disease [ESRD]. The health care providers, social service agencies and medical center failed to adequately respond to the needs of the family. The medical staff [nephrologist, nurse coordinator, dietician, social worker, and CPS worker] worked with a transcultural nurse, Hmong community health worker and the family, to design and negotiate a treatment plan that would be acceptable to the family and the health care team. Trust was reestablished between the family and the healthcare providers and the medical outcome for the child improved.     

Systematic review of international evidence on the effectiveness and costs of paediatric home care for children and young people who are ill

Promoting ‘care closer to home’ for ill children is a policy and practice objective internationally. Progress towards this goal is hampered by a perceived lack of evidence on effectiveness and costs. The aim of the work reported here was to establish the strength of current international evidence on the effectiveness and costs of paediatric home care by updating and extending an earlier systematic review. A systematic review following Centre for Reviews and Dissemination guidelines involved updating electronic searches, and extending them to cover paediatric home care for short‐term acute conditions. Twenty‐one databases were searched from 1990 to April 2007. Hand searching was also carried out. Pairs of team members, guided by an algorithm, selected randomized controlled trials (RCTs), other comparative studies and studies including health economics data. A third reviewer resolved any disagreements. The quality of RCTs was assessed, but a ‘best‐evidence’ approach was taken overall. Data were extracted into specifically designed spreadsheets and a second team member checked all data. Narrative synthesis was used throughout. This paper reports findings from RCTs and studies with health economics data. In total, 16 570 publications were identified after de‐duplication. Eleven new RCTs (reported in 17 papers) and 20 papers with health economics data were included and reviewed. Evidence on costs and effectiveness of paediatric home care has not grown substantially since the previous review, but this updated review adds weight to the conclusion that it can deliver equivalent clinical outcomes for children and not impose a greater burden on families. Indeed, in some cases, there is evidence of reduced burden and costs for families compared with hospital care. There is also growing evidence, albeit based on weaker evidence, that paediatric home care may reduce costs for health services, particularly for children with complex and long‐term needs.     

Family Qualities,Self-Deprecation,and Depressive Symptoms of Zoroastrian Young Adults in Immigrant Families

The aim of this study was to examine family qualities and self-deprecation in relation to depressive symptoms of young adult Zoroastrians from immigrant families in North America. Using snowball sampling and online surveys, self-report data were collected from 171 Zoroastrian young adults (i.e., 18–30 years old) about their perception of cohesion in their families, conflict with their parents, and the extent that they met parental general expectations (e.g., not embarrassing the family). The findings from a path analysis showed that parent–child conflict and meeting parental expectations were indirectly related to depressive symptoms through self-deprecation. Also, higher family cohesion predicted lower levels of depressive symptoms among Zoroastrian young adults. These results are similar to findings in studies with non Zoroastrians. The results suggested prevention and interventions to decrease depressive symptoms could target self-deprecating thoughts as well as perceived family dynamics.     

Children with Special Health Care Needs: How Immigrant Status is Related to Health Care Access,Health Care Utilization,and Health Status

To compare health care access, utilization, and perceived health status for children with SHCN in immigrant and nonimmigrant families. This cross-sectional study used data from the 2003 California Health Interview Survey to identify 1404 children (ages 0–11) with a special health care need. Chi-square and logistic regression analyses were used to examine relations between immigrant status and health access, utilization, and health status variables. Compared to children with special health care needs (CSHCN) in nonimmigrant families, CSHCN in immigrant families are more likely to be uninsured (10.4 vs. 4.8%), lack a usual source of care (5.9 vs. 1.9%), report a delay in medical care (13.0 vs. 8.1%), and report no visit to the doctor in the past year (6.8 vs. 2.6%). They are less likely to report an emergency room visit in the past year (30.0 vs. 44.0%), yet more likely to report fair or poor perceived health status (33.0 vs. 16.0%). Multivariate analyses suggested that the bivariate findings for children with SHCN in immigrant families largely reflected differences in family socioeconomic status, parent’s language, parental education, ethnicity, and children’s insurance status. Limited resources, non-English language, and limited health-care use are some of the barriers to staying healthy for CSHCN in immigrant families. Public policies that improve access to existing insurance programs and provide culturally and linguistically appropriate care will likely decrease health and health care disparities for this population.     

Ethnicity and illness experience: ideological structures and the health care delivery system

This paper analyses the experiences of Anglo-Canadian and immigrant Chinese families with a chronically ill child by using the idea that the social organization and ideology of health care services generate particular illness experiences. Immigrant families find the ideology dissonant with their customs for managing illness. The disjuncture between practices often leads to non-compliance and ineffective treatment. Health professionals explain non-compliance by the obvious facts of cultural differences, but I argue that it should be understood by institutional practices that exclude families from participating in caretaking. I maintain that patients and families should be included in decisions that affect their lives. Pressures from government to economize by increasing home care services, and the increasing number of immigrants may force practitioners to negotiate culturally acceptable care with them.     

Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research‐to‐practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.     

Chronic care infrastructures and the home

In this article I argue that attention to the spatial and material dimensions of chronic disease management and its place‐making effects is necessary if we are to understand the implications of the increased mobilisation – technologically or otherwise – of the home in chronic disease management. Analysing home treatment in asthma and haemophilia care, I argue that in relation to chronic disease management the home is not only always connected to the clinic but moreover, what the home is in part depends on the specificities of these attachments. Drawing primarily on the work of Susan Leigh Star and scholars of human geography I propose the concept of chronic care infrastructures designating the often inconspicuous socio‐material elements (such as medication, control visits, phone calls, doses and daily routines), which are embedded in everyday life (of both the clinic and the home) and participate in producing the effect of treatment but also the effect of home. These chronic care infrastructures demand the emplacement of various objects and activities in everyday life and thus relate to negotiations of ‘keepings’– what to keep and care for and where to grant it room vis á vis other ‘keepings’.     

Patients' and family members' perspectives on the benefits and working mechanisms of family nursing conversations in Dutch home healthcare

The aim of this study is to propose a model of the benefits and working mechanisms of family nursing conversations in home healthcare from the perspective of participating patients and their family members. Family nursing conversations in this study are intended to optimise family functioning, improve collaboration between family and professional caregivers and ultimately prevent or reduce overburden of family caregivers. In a qualitative grounded theory design, data were collected in 2017 using intensive interviewing with participants of family nursing conversations in home healthcare. A total of 26 participants (9 patients and 17 family members) from 11 families participated in a family nursing conversation and the study. Seven nurses who received extensive education in family nursing conversations conducted them as part of their daily practice. Interviews occurred 4–6 weeks after the family nursing conversation. The model that was constructed in close collaboration with the families consists of three parts. The first part outlines working mechanisms of the conversation itself according to participants, i.e. structured and open communication about the care situation and the presence of all of the people who are involved. The second part consists of the benefits that participants experienced during and immediately after the conversation – an increased sense of overview and improved contact among the people involved – and the related working mechanisms. The last part consists of benefits that emerged in the weeks after the conversation – reduced caregiver burden and improved quality of care – and the related working mechanisms. Insight into the benefits and working mechanisms of family nursing conversations may assist healthcare professionals in their application of the intervention and provides directions for outcomes and processes to include in future studies.     

Children and adolescents in outpatient chemotherapy: nursing implications

Hospitalization was common in the care to the child with cancer. However, a great focus is being given to dehospitalization, whose viability occurred through the outpatient clinic follow up, the outpatient clinic chemotherapy, the day-hospitals and/or home care. This paper aims at analyzing the difficulties that the families face at the home environment when their children or adolescents are submitted to the outpatient clinic chemotherapy. The study was developed at the chemotherapy room of the University of S?o Paulo Hospital at Ribeir?o Preto School of Medicine and the empirical data were collected through semi-structured interviews with the children's parents in January and February, 2000. Results showed the following difficulties: changes in family daily life, health team inefficient communication; self-image alteration and chemotherapy side effects. This work enabled access to information that is of real interest in the care to children and/or adolescents with cancer and their families. Based on empirical data, authors elaborated a booklet on home care.     

Locating Multiethnic Families in a Globalizing World

To derive new insights into the growing number of multiethnic, immigrant, transnational families in the United States and abroad, we need to incorporate the concept of globalization into our analysis. As the world becomes increasingly interconnected, an ever‐growing number of heterogeneous individuals are associating with each other and being exposed to new lifestyles, behaviors, and cultural values. This exposure is leading to increased heterogamous relationships and families. The fluidity, flow, and dynamism that characterizes contemporary social life is a critical aspect of understanding multiethnic, immigrant, transnational families. To conduct research and design policies that encourage the well‐being of families, we need to integrate into family scholarship a focus on economics, migration, and varied beliefs and values.     

Understanding an Aboriginal and Torres Strait Islander child’s journey through paediatric care in Western Australia

Objective: To explore caregiver perspectives of their children’s journey through the specialist paediatric service, the Aboriginal Ambulatory Care Coordination Program (AACC), and non‐AACC services at the Perth Children’s Hospital. Methods: Eighteen semi‐structured interviews with families of Aboriginal children were completed. Indigenous research methodology and a phenomenological approach guided data collection and analysis. Results: Four key themes were identified from interviews: hospital admissions, discharge and follow‐up outpatient appointments; communication; financial burden; and cultural issues. Our findings suggest Aboriginal children and their caregivers using the AACC program had more positive and culturally secure experiences than those using non‐AACC services. However, barriers relating to health providers’ understanding of Aboriginal cultural issues and lived experience were commonly discussed, regardless of which service families received. Conclusions: Australian Aboriginal children have an increased use of tertiary hospital care compared to non‐Indigenous children. Healthcare programs specifically designed for Aboriginal children and their families can improve their experience of care in hospital. However, improvements in cultural awareness for other hospital staff is still needed. Implications for public health: Dedicated Aboriginal programs in mainstream services can successfully improve cultural care to their clients, which is fundamental to improving service delivery for families.     

Dying with motor neurone disease,what can we learn from family caregivers?

Background Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. Objective To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end‐of‐life care. Design Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. Setting and participants Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. Results Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. Discussion and Conclusion Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end‐of‐life care. Strategies for on‐going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.