South Asian Parents Research Articles

“We go through trauma”: South Asian parents’ experiences of autism diagnosis and early supports for their autistic children in Australia

IntroductionGrowth of the Australian South Asian migrant community has surged over the last decade. Yet we have minimal information about migrant South Asian parents’ experiences of raising an autistic child in Australia. This participatory research informs the issue through reporting first-hand accounts of accessing an autism diagnosis and receiving early supports for South Asian parents and their autistic children living in Australia. MethodsParents from India, Pakistan and Sri Lanka (n = 13) were interviewed in their preferred language. During interviews, parents were asked about their experiences of the diagnostic process and navigating early supports for their autistic child. Interviews were analysed using reflexive thematic analysis. ResultsParents described experiencing myriad challenges to accessing early autism supports, including limited knowledge, funding issues, lengthy waiting lists, and poor-quality clinicians. They also reported struggling to accept their child’s diagnoses and facing judgement from within their community. Unlike other migrant Australian communities, this group of parents did not describe obtaining community-specific supports and often navigated their journeys alone. These cumulative challenges impacted parents’ mental health. Yet, parents also described proactively seeking as much support as possible, preferring goal-based, intensive, behavioural early interventions. Discussion and implicationsClinicians should be aware that families from particular migrant/cultural minority groups may be more isolated than others, and consider how best to support a sense of community belonging in other ways. That these parents expressed preference for intensive, behavioural autism supports also highlights the diversity of service-related views and desires in the autistic and autism communities.

Aging Parents and the Ties That Bind: Intergenerational Relationship Quality Among Culturally Diverse Canadian Families.

Drawing from a life course perspective, this paper examines mid/later-life parent-child relationship quality among ethnically diverse families. Focus is on the role of culture, child, and parental characteristics. Data are drawn from a study of 588 parents aged 50+ of a least one child aged 19-35 who reside in Metro Vancouver, B.C. from four Canadian cultural groups: British, Chinese, Persian/Iranian, and South Asian. Using OLS regression methods, we use two dependent variable scales: positive and negative support/interaction appraisals of the relationship. The positive relationship quality scale is associated with South Asian versus British-Canadian parents, mothers, those with greater income satisfaction, and daughters. The negative scale is inversely associated among South Asian versus British-Canadian parents, income satisfaction, parental health, and being unpartnered (vs. partnered). Interaction effects are found between gender and ethnicity. Implications for theorizing and applied recommendations for those who work with culturally diverse aging families are discussed.

Autism, Stigma, and South Asian Immigrant Families in Canada.

Considerable empirical evidence suggests early recognition of autism and access to support result in long-term positive outcomes for children and youth on the spectrum and their families. However, children of racialized families are often diagnosed at later ages, are more likely to be misdiagnosed, and experience many barriers to service access. There is also a paucity of research exploring the experiences of parents from specific immigrant groups caring for their children on the spectrum in Canada, many of whom identify as members of racialized communities. As such, the main aim of the study was to examine how South Asian immigrant parents in Canada are experiencing available care programs and support. Another aim was to examine their perceptions of social stigma associated with autism. We conducted an inductive thematic analysis of qualitative data from nine interviews with South Asian parents living in Ontario, Canada. Findings confirmed barriers to an autism diagnosis and to service access. Additionally, parents reported pronounced autism stigma, which enacted impediments to timely diagnosis, service access, and health-promoting behaviors. Findings also revealed that parents experience considerable caregiver stress and psychological distress. The generated evidence is anticipated to inform equitable policy, programming, and practices that better support the needs of children on the spectrum and their immigrant families.

Resisting Legacies of Racialized Adversities: Counterstories of South Asians Navigating Transition Planning

Strengthening parent support is critical to improving the transition to adulthood outcomes of racially minoritized youth. However, in literature, the transition experiences of racially minoritized parents are often characterized using deficit-based language. Strengths-based counternarratives of racially minoritized parents could offer a broader account of parent experiences. We conducted a pilot sequential explanatory transformative mixed methods design with equal priority to capture the adversities experienced and the strengths leveraged by South Asian parents in the United States. When navigating the transition planning process. We used the strengths-based frameworks of community cultural wealth and counterstories to reframe and re(present) the transition experiences of South Asian parents. Specifically, we blended quantitative ( N = 46) and qualitative findings ( N = 8) to develop a preliminary meta-inference of the transition experiences of South Asian parents. We discuss the implications of our findings for research and practice.

Parental accepting and rejecting behaviors: Experiences of South Asian gay and bisexual men in Canada

AbstractObjectiveThis article explored the coming out experiences of South Asian gay and bisexual young men at home.BackgroundIntersectionality theory suggests that lesbian, gay, and bisexual youth of color may experience double minority stress, due to facing the multiple stressors of sexual minority stigma and racism. Although family support has been identified as important social support for youth, little research has considered how well families support South Asian LGBTQ youth.MethodSemistructured interviews were conducted with 15 gay and bisexual South Asian young men. Data were systematically analyzed according to the principles of interpretive description.ResultsThree overarching themes were identified in the analysis including that (a) parents were very concerned about what others would think about their child's sexual orientation; (b) parents demonstrated a wide range of reactions to their child's disclosure, which most commonly included anger, denial, and avoidance; and (c) there are a lack of resources for South Asian sexual minority youth.ConclusionsThese findings suggest that because of traditional homophobic attitudes espoused by South Asian cultures, South Asian gay and bisexual youth find it very challenging to navigate coming out to their parents. For the same reasons, it makes it very difficult for South Asian parents to accept their child's sexual orientation.ImplicationsIt is important that interventions to increase parental support of South Asian gay and bisexual youth are culturally relevant.

Navigating the quality-of-life impacts of a chronic inflammatory disease (CID) among South Asian children and parents

This study investigates quality-of-life impacts (QOL) associated with managing a chronic inflammatory disease (CID) among first and second generation South Asian children and parents in the Greater Toronto Area, Ontario. While empirical evidence on both the rise of CIDs among immigrants and the QOL impacts of managing a CID is increasing, little attention has been given to the QOL impacts of managing a CID among immigrant adult children and their families. Drawing on analysis of 24 in-depth interviews with adult children and parents (14 adult children, 10 parents) the results indicate that first and second generation South Asian adult children and parents experience challenges acquiring a CID diagnosis (e.g., bureaucratic issues, transportation, inconsistent and unavailable physician care), and encounter multidimensional short- and long-term QOL implications associated with CID management. These challenges are compounded further by culturally insensitive care and language barriers in the health system. QOL impacts associated with CID management among adult children ranged from comfort and peace of mind due to increased ability to participate in daily life, while others reported intensified anxiety, stress and depression due to their inability to fully engage in daily life. Although all parents reported heightened stress due to their child's CID diagnosis and new management regimens, parents employed different coping mechanisms that created new short term QOL challenges for their families. The findings suggest that a patient centered approach to CID diagnosis and management, informed by personal experiences, cultural sensitivities and lived experiences of QOL representations are needed to mitigate negative QOL outcomes across a patient's life and deliver appropriate evidence informed care for those in need.

The cross-racial/ethnic gesture production of young autistic children and their parents.

Early gesture plays an important role in prelinguistic/emerging linguistic communication and may provide insight into a child's social communication skills before the emergence of spoken language. Social interactionist theories suggest children learn to gesture through daily interactions with their social environment (e.g., their parents). As such, it is important to understand how parents gesture within interactions with their children when studying child gesture. Parents of typically developing (TD) children exhibit cross-racial/ethnic differences in gesture rate. Correlations between parent and child gesture rates arise prior to the first birthday, although TD children at this developmental level do not yet consistently exhibit the same cross-racial/ethnic differences as their parents. While these relationships have been explored in TD children, less is known about the gesture production of young autistic children and their parents. Further, studies of autistic children have historically been conducted with predominantly White, English-speaking participants. As a result, there is little data regarding the gesture production of young autistic children and their parents from diverse racial/ethnic backgrounds. In the present study, we examined the gesture rates of racially/ethnically diverse autistic children and their parents. Specifically, we explored (1) cross-racial/ethnic differences in the gesture rate of parents of autistic children, (2) the correlation between parent and child gesture rates, and (3) cross-racial/ethnic differences in the gesture rates of autistic children. Participants were 77 racially/ethnically diverse cognitively and linguistically impaired autistic children (age 18 to 57 months) and a parent who participated in one of two larger intervention studies. Naturalistic parent-child and structured clinician-child interactions were video recorded at baseline. Parent and child gesture rate (number of gestures produced per 10 min) were extracted from these recordings. (1) Parents exhibited cross-racial/ethnic differences in gesture rate such that Hispanic parents gestured more frequently than Black/African American parents, replicating previous findings in parents of TD children. Further, South Asian parents gestured more than Black/African American parents. (2) The gesture rate of autistic children was not correlated with parent gesture, a finding that differs from TD children of a similar developmental level. (3) Autistic children did not exhibit the same cross-racial/ethnic differences in gesture rate as their parents, a result consistent with findings from TD children. Parents of autistic children-like parents of TD children-exhibit cross-racial/ethnic differences in gesture rate. However, parent and child gesture rates were not related in the present study. Thus, while parents of autistic children from different ethnic/racial backgrounds appear to be conveying differences in gestural communication to their children, these differences are not yet evident in child gesture. Our findings enhance our understanding of the early gesture production of racially/ethnically diverse autistic children in the prelinguistic/emerging linguistic stage of development, as well as the role of parent gesture. More research is needed with developmentally more advanced autistic children, as these relationships may change with development.

Health Care Use and Barriers to Care for Chronic Inflammatory Diseases (CID) among First and Second Generation South Asian Immigrant Children and Parents in Ontario Canada.

Although immigrants are disproportionately impacted by growing chronic inflammatory disease (CIDs) rates, yet suffer barriers to access health care, little attention has been given to their primary healthcare or specialist healthcare access as it relates to complex, chronic diseases in Canada, a country with universal health care. This study aims to investigate CID health care use and barriers to care among first- and second-generation immigrant South Asian children and parents in the Greater Toronto Area, Ontario. Drawing on analysis of 24 in depth interviews with children and parents (14 children, 10 parents), the results reveal that although CIDs disproportionately affects South Asian immigrants, they encounter health system, geographic, interpersonal, and knowledge barriers to access requisite care. These barriers exist despite participants having a GP, and are compounded further by limited familial systems, culturally insensitive care, and structural inequities that in some instances make parents choose between health access or other basic needs. Although all participants recognized the importance of specialized care, only 11 participants regularly accessed specialized care, creating new schisms in CID management. The findings suggest that a multisectoral approach that address individual and structural level socio-structural drivers of health inequities are needed to create more equitable healthcare access.

What Family Circumstances, During COVID-19, Impact on Parental Mental Health in an Inner City Community in London?

The introduction of lockdown due to a public health emergency in March 2020 marked the beginning of substantial changes to daily life for all families with young children. Here we report the experience of families from London Borough of Tower Hamlets with high rates of poverty and ethnic and linguistic diversity. This inner city community, like communities worldwide, has experienced a reduction or closure in access to education, support services, and in some cases, a change in or loss of income, job, and food security. Using quantitative survey items (N = 992), we examined what differences in family circumstances, for mothers and fathers of young children aged 0–5 living in Tower Hamlets, during March 2020 to November 2020, were associated with their mental health status. We measure parental mental health using symptoms of depression (self-report: Patient Health Questionnaire depression scale: PHQ-8), symptoms of anxiety levels (self-report: General Anxiety Disorder: GAD-7), and perceptions of direct loneliness. We find parental mental health difficulties are associated with low material assets (financial security, food security, and children having access to outside space), familial assets (parents time for themselves and parent status: lone vs. cohabiting), and community assets (receiving support from friends and family outside the household). South Asian parents and fathers across ethnicities were significantly more likely to experience mental health difficulties, once all other predictors were accounted for. These contributing factors should be considered for future pandemics, where restrictions on people's lives are put in place, and speak to the importance of reducing financial insecurity and food insecurity as a means of improving the mental health of parents.

A novel mutation in ACADVL causing very long-chain acyl-coenzyme-A dehydrogenase deficiency in a South Asian pediatric patient: a case report and review of the literature

BackgroundVery long-chain acyl-coenzyme-A dehydrogenase deficiency is a rare, severe life-threatening metabolic disorder of mitochondrial fatty acid oxidation, caused by mutations in ACADVL gene. Here we present a genetically confirmed case of a South Asian baby girl with severe, early-onset form of very long-chain acyl-coenzyme-A dehydrogenase deficiency due to a novel mutation in ACADVL gene.Case presentationIndex case was the second baby girl of second-degree consanguineous South Asian parents. She had an uncomplicated antenatal period and was born by spontaneous vaginal delivery at term with a birth weight of 2910 g. She had been noted to have fair skin complexion, hypotonia, and 3 cm firm hepatomegaly. Since birth, the baby developed grunting, poor feeding, and recurrent episodes of symptomatic hypoglycemia and convulsions with multiple semiology. Her septic screening and urine ketone bodies were negative. The baby had high anion gap metabolic acidosis and elevated transaminases and serum creatine phosphokinase levels. Echocardiogram at 4 months revealed bilateral ventricular hypertrophy. Acylcarnitine profile revealed elevated concentrations of tetradecanoylcarnitine (C14), tetradecanoylcarnitine C14:1, and C14:1/C16. Unfortunately, the baby died due to intercurrent respiratory illness at 4 months of age. Sequence analysis of ACADVL gene in perimortem blood sample revealed homozygous frame shift novel variant NM_001270447.1, c.711_712del p.(Phe237Leufs*38), which confirmed the diagnosis of very long-chain acyl-coenzyme-A dehydrogenase deficiency.ConclusionsThis case demonstrates the importance of early diagnosis and management of very long-chain acyl-coenzyme-A dehydrogenase deficiency in improving the outcome of the patients. Implementation of newborn screening using tandem mass spectrometry in Sri Lanka will be beneficial to reduce the morbidity and mortality of treatable disorders of inborn errors.

All Kinds of Other by James Sie

Reviewed by: All Kinds of Other by James Sie Kiri Palm Sie, James All Kinds of Other. Quill Tree/HarperCollins, 2021 [416 p] Trade ed. ISBN 9780062962492 $17.99 E-book ed. ISBN 9780062962515 $9.99 Reviewed from digital galleys Ad Gr. 8-12 Jules is starting off his sophomore year at a new and (shudder) public school, and he has to decide whether or not to come out there, since he already had to leave his private school after his teammates found out he was gay. His plans of flying under the gaydar go awry when he meets fellow new kid Jack. Of course, Jack has secrets of his own: namely that he's trans and he recently lost his best friend, Evie, by not standing up for her against transphobic bullies and her South Asian parents. The boys' budding friendship—and mutual crush—takes a sharp dive when someone sends an old YouTube video of Jack and Evie talking about their transitions to the entire school. Sie's YA debut pairs a will-they-won't-they romance with heavy internal struggles told in alternating first-person narratives, with some of Jack's YouTube transcripts and Tumblr ramblings peppered in. While Jules slowly examines what his life will be like once he comes out—and how a relationship with a trans boy may affect it—Jack battles body dysmorphia, guilt about betraying his first and best ally, and horrifying near-daily microaggressions. An eleventh hour, mostly happy ending will elicit sighs and hope for the boys' future, but the path to this dénouement tips from realistically challenging to relentlessly grim, enervating rather than empowering trans readers. Such readers would be better served with [End Page 438] recent #ownvoices offerings such as Stoeve's Between Perfect and Real (BCCB 4/21) or Borinsky's Sasha Masha (BCCB 11/20). Copyright © 2021 The Board of Trustees of the University of Illinois

Risk of forced marriage amongst people with learning disabilities in the UK: Perspectives of South Asian carers.

People with intellectual disabilities are at increased risk of forced marriage compared to those without intellectual disabilities. In the UK, this risk is particularly, though not exclusively, associated with South Asian communities and is linked to the desire to secure long-term care. Focus groups and semi-structured interviews were undertaken with South Asian parents and family carers (n=22) of adults with intellectual disability and the resultant data thematically analysed. Although securing care for their intellectually disabled relative was identified as a key motivator for forced marriage, other important themes also emerged. These included cultural and religious beliefs about disability and marriage, and limited understanding of relevant laws. Factors militating against forced marriage were also identified, including fears of abuse and neglect. Implications for the provision of services and the need for improved access to information on forced marriage of people with intellectual disabilities are highlighted.

Exploring Knowledge and Perspectives of South Asian Children and Their Parents Regarding Healthy Cardiovascular Behaviors: A Qualitative Analysis.

South Asian children and parents have been shown to have a higher risk for cardiovascular disease (CVD) relative to white individuals. To design interventions aimed at addressing the comparatively higher burden in South Asians, a better understanding of attitudes and perspectives regarding CVD-associated behaviors is needed. As a result, we sought to understand knowledge about CVD risk in both children and parents, and attitudes toward physical activity and diet in both the children and parents, including potential cultural influences. In-depth interviews were conducted with 13 South Asian child-and-parent dyads representing a range of child body mass index (BMI) levels, ages, and with both sexes. South Asian children and parents demonstrated good knowledge about CVD prevention; however, knowledge did not always translate into behavior. The influence of social and cultural dynamics on behavior was also highlighted. To ensure that interventions aimed at this population are effective, an understanding of the unique social dynamics that influence diet and physical activity–related behaviors is needed.

Parental reactions to British South Asian young men who identify as gay

British South Asian gay men may face significant psychological distress as a result of parental rejection due to their sexual orientation. This study is the first in the UK to examine parental reactions to British South Asian young men who come out as gay. Twelve British South Asian parents participated in “conversational enquiries,” a series of unstructured interviews, which explored their experiences of having a son come out as gay. The data were analyzed using qualitative thematic analysis and identity process theory. Three themes are described. First, threats to self-esteem and continuity associated with having a gay son are described. Second, it is shown that parents favored and, in some cases, continue to favor denial of the fact, or implications, of their son’s coming out. Third, parents may deem isolation from significant others to be necessary in order to avoid social stigma due to their sons’ sexual orientation. Recommendations are offered for supporting the parents of British South Asian young men who identify as gay.

Cultural adaptation of a children\u2019s weight management programme: Child weigHt mANaGement for Ethnically diverse communities (CHANGE) study

BackgroundChildhood obesity prevalence continues to be at high levels in the United Kingdom (UK). South Asian children (mainly Pakistani and Bangladeshi origin) with excess adiposity are at particular risk from the cardiovascular consequences of obesity. Many community-based children’s weight management programmes have been delivered in the UK, but none have been adapted for diverse cultural communities. The aim of the Child weigHt mANaGement for Ethnically diverse communities (CHANGE) study, was to culturally adapt an existing children’s weight management programme for children aged 4–11 years so that the programme was more able to meet the needs of families from South Asian communities.MethodsThe adaptation process was applied to First Steps, an evidence informed programme being delivered in Birmingham (a large, ethnically diverse city). A qualitative study was undertaken to obtain the views of South Asian parents of children with excess weight, who had fully or partially attended, or who had initially agreed but then declined to attend the First Steps programme. The resulting data were integrated with current research evidence and local programme information as part of a cultural adaptation process that was guided by two theoretical frameworks.ResultsInterviews or focus groups with 31 parents in their preferred languages were undertaken. Themes arising from the data included the need for convenient timing of a programme in a close familiar location, support for those who do not speak English, the need to focus on health rather than weight, nutritional content that focuses on traditional and Western diets, more physical activity content, and support with parenting skills. The data were mapped to the Behaviour Change Wheel framework and Typology of Cultural Adaptation to develop an intervention programme outline. The research evidence and local programme information was then used in the detailed planning of the programme sessions.ConclusionsThe process of cultural adaptation of an existing children’s weight management programme resulted in a theoretically underpinned programme that is culturally adapted at both the surface and deep structural levels.Trial registrationISRCTN81798055, registered: 13/05/2014.

Technology as a Disruptive Agent: Intergenerational Perspectives

This study explores how British South Asian parents perceive their children’s technology consumption through their collectivist lenses and interdependent values. The findings for this qualitative study indicate that second and third generation South Asian parents acknowledge the benefits of children’s technology use; but largely perceive technology as a disruptive agent, whereby children are becoming isolated and increasingly independent within the household. The analysis aims to understand how parents view their children’s relationship with others as a result of technology consumption. Accordingly, this paper proposes an extension of the Construal of self conceptualisation and contributes a Techno-construal matrix that establishes a dyadic connection between technology consumption and cultural values. Overall, the study reveals that children display less inter-reliance and conformance typically associated with collectivist cultures, resulting from their technology use. Consequently, parents interpret their children’s shift from interdependence to more independence as a disruptive and unsettling phenomenon within the household.

Barriers and Facilitators of Physical Activity in Children of a South Asian Ethnicity

Children of South Asian ethnicity residing in England have low levels of physical activity. Limited literature exists on correlates, barriers, and facilitators to activity in South Asian children. The aim of this study was to fill this gap in the literature. Interviews were conducted with 10 parents of South Asian ethnicity residing in the UK. Interviews covered a description of the family setup, participants’ opinions of physical activity including barriers and facilitators and their children’s participation, as well as approaches to general parenting, and how children spend their free time. Data were analysed using thematic analysis. Key themes identified included (i) restraints on parents’ and children’s time to be physically active; (ii) the role of the family in children’s physical activity participation; (iii) situational barriers to physical activity; (iv) physical activity not a priority; (v) opportunities to be active; and (vi) perception of activity level and health. A number of key barriers to South Asian children’s participation in physical activity were identified, including (i) restraints on parents and children’s time; (ii) parents providing limited support for physical activity; and (iii) physical activity having a low priority. A number of facilitators were also identified (i) play; (ii) school-time; and (iii) extra-curricular clubs. In this sample of South Asian parents residing in the UK several socio-cultural barriers and facilitators of their children’s physical activity have been identified. The study provides preliminary data for a larger study to ascertain if such barriers and facilitators are representative of the wider South Asian community, so that recommendations for intervention and policies can be made.

A337 KABUKI SYNDROME: A NEW ADDITION TO THE DIFFERENTIAL DIAGNOSIS OF LOW-GGT NEONATAL CHOLESTASIS

Neonatal low-GGT cholestasis has a unique differential diagnosis centered on congenital disorders of bile acid transport or synthesis. Kabuki syndrome is a genetic condition with distinctive facies, developmental delay, and skeletal, renal and cardiac defects. While Kabuki has been associated with high-GGT cholestatic conditions including biliary atresia, patients with low-GGT cholestasis have not previously been described. To describe 2 patients with Kabuki syndrome and low-GGT neonatal cholestasis Chart review. Case 1: A female infant of non-consanguinous South Asian parents was born at 35 6/7 weeks. Antenatal US was normal. Facial dysmorphisms and hypotonia were noted at birth. Whole exome sequencing analysis confirmed Kabuki syndrome with de novo deletion in the KMT2D gene. Ventilation was needed from birth, with right-sided heart failure from pulmonary hypertension. She required TPN. Cholestasis was identified at 6 weeks: conjugated bilirubin 175umol/L, AST 404U/L, ALT 121U/L, ALP 289U/L, GGT 64U/L (70–130). Abdominal US: hepatosplenomegaly and ascites without biliary abnormalities. CMV infection occurred at 12 weeks. Liver biochemistry improved with ursodeoxycholic acid, cessation of TPN and CMV resolution. She was discharged home at 7 months. Case 2: A male infant of non-consanguinous Filipino parents was born at 25 4/7 weeks. He had a patent ductus arteriosis and solitary renal cyst but no dysmorphisms or other congenital abnormalities. He required TPN. Intractable pulmonary hypertension necessitated prolonged ventilation. Cholestasis was identified at 4 weeks. Stools were initially pale. HIDA scan was non-excretory. Liver biopsy: giant cell transformation, mild portal fibrosis, no bile duct proliferation. Stools later became pigmented. A jaundice gene chip (EGL) found no mutations of familial intrahepatic cholestasis (PFIC). Kabuki syndrome was diagnosed at 4 months on chromosome array. Peak liver biochemistry: conjugated bilirubin 512umol/L, AST 731U/L, ALT 345 U/L, ALP 891U/L, GGT 65U/L. Repeat liver biopsy at 3 months: extensive giant cell transformation. EM: canaliculi with markedly reduced stubby microvilli, with finely granular to filamentous material suggesting BSEP deficiency (PFIC type 2). He died at 5 months from pulmonary hypertension. These are the first reported cases of Kabuki syndrome with low-GGT neonatal cholestasis. KMT2D gene mutations should be considered on the short list of genetic disorders causing low-GGT cholestasis. We hypothesize that in Kabuki syndrome, KMT2D gene mutations modify lysine methytransferase activity and impair FXR expression of target gene products including BSEP, leading to phenotypic PFIC type 2 disorders. Kabuki syndrome gene mutations should be included in next generation jaundice gene chip panels for neonatal cholestasis. None

A qualitative study to identify parents\u2019 perceptions of and barriers to asthma management in children from South Asian and White British families

BackgroundOver one million children receive treatment for asthma in the UK. South Asian children experience excess morbidity and higher rates of hospitalization than the White population. This study aimed to explore perceptions and experiences of asthma and asthma management in British South Asian and White British families, to identify barriers to optimal management and to inform culturally appropriate interventions to improve management.MethodsA qualitative methodology, using semi-structured interviews was adopted. Members of 30 families from six major South Asian ethnic-religious groups were purposively sampled (n = 49). For comparison, 17 White British parents were interviewed. Topics included understandings of asthma; day-to-day management; interactions with health care providers and the perceived quality of healthcare services. Data were analyzed using interpretive thematic analysis, facilitated by NVivo. Similarities and differences between South Asian and White families were analysed across key themes.ResultsMany of the problems facing families of a child with asthma were common to South Asian and White British families. Both had limited understanding of asthma causes and triggers and expressed confusion about the use of medications. Both groups reported delays in receiving a clear diagnosis and many experienced what was perceived as uncoordinated care and inconsistent advice from health professionals. No family had received an asthma plan. South Asian families had more difficulty in recognising severity of symptoms and those with limited English faced additional barriers to receiving adequate information and advice about management due to poor communication support systems. South Asian parents reported higher levels of involvement of wider family and higher levels of stigma. Attendance at the emergency department was related to previous experience, difficulties in accessing primary care, lack of knowledge of alternatives and difficulties in assessing severity.ConclusionsBarriers to optimal asthma management exist at the individual family, community and healthcare systems levels. Culturally sensitive, holistic and collaboratively designed interventions are needed. Improved communication support for families with lower proficiency in English is required. Healthcare professionals need to ensure that families receive an asthma plan and make greater efforts to check families’ understandings of asthma triggers, use of medications, assessment of asthma severity and accessing help.

Ethnic differences in parental feeding behaviors in UK parents of preschoolers

Childhood obesity is prevalent among ethnic minorities in the UK but little is known about parent feeding practices in these populations. We administered questionnaires assessing parental feeding behaviors and perceptions and concerns relating to child weight to White British (n = 271), South Asian (n = 59), and Black Afro-Caribbean (n = 42) parents of UK 3-5 year-olds. Child BMI z-scores were determined from measured heights and weights. South Asian and Black Afro-Caribbean parents exhibited greater pressure to eat than White British parents. Black Afro-Caribbean parents additionally scored higher on instrumental feeding and lower on monitoring, while South Asian parents scored higher on emotional feeding. Black Afro-Caribbean parents reported the greatest concern about both child overweight and underweight. Ethnic differences were unchanged by controlling for perceptions and concerns relating to child weight, or for actual BMI z, parent education, or household income. Exploratory analyses suggested some evidence for sex differences within ethnic groups. For example, South Asian parents of daughters scored higher than White British parents of daughters on emotional feeding, with no ethnic differences apparent for parents of sons. Our findings support considering variation in parent feeding behaviors and weight-related attitudes by parental ethnicity and child sex when developing obesity interventions.