Parents' emotional and social experiences of caring for a child through cleft treatment

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child's impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents' emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.     

"Come and take a walk": listening to Early Head Start parents on school-readiness as a matter of child, family, and community health

We explored the perspectives and experiences of low-income, predominantly African American families regarding children's school-readiness. Our research, which involved qualitative interviews, ethnographic case studies, and "photovoice" methods, focused on families participating in the national evaluation of Early Head Start. While valuing academic skills, study parents emphasized the importance of social and emotional health in regard to both children's and parents' readiness to begin school. These developments are especially critical given the challenges parents perceive in local school environments. On the basis of a social ecology framework, we argue that psychological and environmental dimensions of school-readiness are public health matters and that understanding the perspectives of low-income and minority parents on such issues is a critical aspect of health communication dedicated to eliminating health disparities.     

Parenting support in the context of poverty: a meta-synthesis of the qualitative evidence

From the outset, providing support for parents has been a key feature of New Labour's policy agenda, but 'good' parenting, and child health and well-being are often undermined by the stresses associated with poverty. Moreover, there may be a gap between policy aims, and the perceptions and motivations of those intended to benefit. Drawing on a systematic review of qualitative studies of low-income parents, the present paper explores their experiences of informal and formal support networks, considering their strengths and weaknesses in the context of poverty. Traditional systematic review methods were used to locate and critically appraise 12 UK qualitative studies, which took as their focus parents' subjective experiences of caring for children in impoverished circumstances. Meta-ethnographic methods were then used to produce a qualitative meta-synthesis of findings. Exploring the similarities and differences in parents' accounts across studies identified positive and negative aspects of social support as a resource for poor parents. The review suggests that naturally occurring support systems do provide both material and emotional help to parents, but that such support has certain inherent drawbacks. It is not universally available and, in some circumstances, carries negative associations for poor families. Low-income lone mothers in particular enjoy smaller support networks, and are more reliant on mutual support than those in two-parent families. Paradoxically, it is the most socially isolated women who are least willing to seek professional help. Overall, low-income parents' experiences of formal health and social welfare agencies are mixed, and not invariably positive. In conclusion, this paper suggests that formal support services have the potential to fill gaps in informal support systems for poor families, but only if these are provided in ways which are sensitive to their needs. Therefore, parents' perspectives are essential to informing service design, development and evaluation in health and social care.     

COVID-19 in Western Australia: ‘The last straw’ and hopes for a ‘new normal’ for parents of children with long-term conditions

Background

Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions.

Aim

The study explored the stress experiences of parents caring for children with long-term conditions during COVID-19 in Western Australia.

Design and Participants

The study was codesigned with a parent representative caring for children with long-term conditions to ensure essential questions were targeted. Twelve parents of children with various long-term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio-recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis.

Findings

Two themes were produced: (1) ‘Keep my child safe’ describes the children's vulnerabilities due to their long-term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) ‘COVID-19's silver lining’ covers the positives of the COVID-19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising).

Conclusion

Western Australia provided a unique context for the COVID-19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID-19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID-19 consequences. The findings highlight that some parents of children with long-term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID-19 and similar crises.

Patient or Public Contribution

This study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end-user engagement and ensure essential questions and priorities were addressed.     

Parents' Perspectives on Talking to Preteenage Children About Sex

CONTEXT: Although parent-child communication about sex can significantly affect children's sexual behavior, many parents do not talk to their children about sex. Qualitative research can elucidate parents' attitudes toward and experiences with communicating with their children about sex.
METHODS: In 2007, 16 focus groups were conducted with 131 mothers and fathers of children aged 10–12 in three cities in different regions of the United States. Separate groups were conducted for mothers and fathers, and for black, white and Hispanic parents. Content analysis was used to identify core themes and patterns.
RESULTS: Parents believed it is important to talk to their children about sex and believed that doing so can be effective, but many had not done so. Primary barriers were parents' perception that their children are too young and not knowing how to talk to their children about the subject. Parents found it easiest to talk to their children about sex if they had a good parent-child relationship, took advantage of opportunities to talk and began having the discussions when their children were very young. Some differences were noted by parents' race, ethnicity, gender and location.
CONCLUSIONS: Interventions aimed at encouraging parents to talk to their children about sex should enhance parents' understanding of the stages of children's sexual development and focus on the parents of young children. In addition, interventions should support parents in a range of strategies that complement discussions about sex.     

Gaps in parental understandings and experiences of vaccine-preventable diseases: a qualitative study

OBJECTIVE: To explore parents' understandings of the diseases included in the current UK Childhood Immunization Programme (CIP), and the role of first- and second-hand experiences of these diseases in assessments of their severity. METHODS: A qualitative study in which 66 parents (58 mothers and 8 fathers) of children aged 6 years and below, and six mothers of immuno-compromised children, took part in 18 focus group discussions between November 2002 and March 2003. RESULTS: There were many gaps in parents' knowledge about some vaccine-preventable diseases, most notably diphtheria, tetanus and haemophilus influenzae type b, three of the diseases covered by the pentavalent vaccine (introduced into the UK CIP in 2004). These gaps led some parents to question the need for vaccination. First-hand experiences of the diseases reinforced the need for vaccination in some cases (e.g. Men C), but undermined it in others (e.g. pertussis, measles, rubella, mumps). Poliomyelitis and diphtheria were no longer seen as a threat to children's health in Britain. Some parents saw mumps as only a threat to boys' health and rubella as only having relevance to girls'. CONCLUSIONS: As fewer parents have direct experiences of vaccine-preventable diseases, there is an increasing need to provide parents with accessible information about these diseases. It is also important to recognize that direct or indirect experiences of any of the diseases may either heighten or diminish parents' assessments of the severity of these diseases.     

The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents' accounts

Satisfaction with service-related choices has not received much research attention, especially beyond medical/health-related decisions. This paper reports findings from an analysis of parents' accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition. It focuses particularly on factors and processes, which contribute to parents' satisfaction. This is particularly interesting given that sub-optimal outcomes or negative consequences are often experienced following a service-related choice being implemented. The data reported here were collected as part of a larger, longitudinal study (the Choice and Change project) of service users' experiences of choice-making, including the outcomes and consequences of those choices. Parents of disabled young people with degenerative conditions formed part of this sample. The accounts of 14 of these parents, collected over three interviews during a two and a half-year period, all of whom expressed satisfaction with the medium- to long-term outcomes of a service-related choice, were selected for specific analyses to understand what underlies satisfaction with service-related choices. Clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to 'trade off' the negative consequences of a choice. These included the considerable demands placed on parents' personal, financial and practical resources to operationalise a choice, and the emotional impact incurred by significant changes such as the loss of the carer role. The passage of time was important in allowing evidence of positive outcomes to emerge, psychological or emotional adjustments to be made, and for parents to develop trust in new service providers. The findings suggest that practitioners can have an important role in both practical and emotional support for parents' choice-making for, or with, their disabled son/daughter.     

'Doing the "right" thing': how parents experience and manage decision-making for children's 'normalising' surgeries

Using cleft lip and palate as an exemplar, this article examines parents' decision-making for children in the context of elective treatments which aim to 'normalise' a child's function, appearance, communication or identity. Using purposive and theoretical sampling, 35 parents with children from infancy to young adulthood were recruited through a specialist cleft centre in England. Parents were interviewed in-depth between 2006 and 2008 about their beliefs and motivations in relation to treatment decision-making in this context. A grounded theory approach was used to analyse the data. Findings revealed a core category, 'doing the "right" thing', that encapsulated parents' main concern in relation to their children's treatment and highlighted several emotional, social and cultural considerations underpinning their decision-making stance. Parents fulfilled a perceived 'moral' obligation to be 'good' parents by pursuing the 'normalising' treatments, particularly surgeries, made available to their children. Such treatments were viewed as a way of facilitating their child's social inclusion and helping them reach their full potential. In order to enable their continued pursuit of treatments over the long-term, parents also constructed specialist practitioners as highly competent and particularly trustworthy. This article captures the complexities involved in parents' decision-making for children's elective 'normalising' treatments, where both functional and appearance-related concerns are involved. It suggests that social norms about parenting, physical appearance and healthcare practitioner power may significantly shape decision-making in this context, so that such choices may be viewed primarily as 'moral' rather than social. Services could support parents with such challenges, by gauging their needs for information about surgery and its likely outcomes and providing emotional/decisional support to consider all available options.     

Parental experiences of cleft lip and palate services

In 1995 a cleft liaison service was developed in a health and social care trust which comprises primary and secondary care. The service team includes hospital and community midwives, health visitors and a consultant orthodontist who had a particular interest, and experience in the care of children born with a cleft and often this work was in addition to their existing roles. Anecdotal evidence indicated that the service was of great help to parents but it had never been formally evaluated. Therefore this evaluation was designed to explore the needs and views of parents who had a baby or child with a cleft of the lip and or palate, using a qualitative, cross sectional approach. Following 20 parents interviews responses were recorded, transcribed and a content analysis completed. Three main themes emerged relating to the parents' emotional experiences, their need for information and their experience of caring for a child with a cleft. This study has provided insight into the service delivered by the team and reiterates the need for retaining, maintaining and expanding this specialist service to other localities. Updating midwifery and health visiting staff in terms of knowledge and expertise was implicit to provide a responsive service to meet the needs of the child and family.     

Preimmigration beliefs of life success, postimmigration experiences, and acculturative stress: South Asian immigrants in the United States

This study retrospectively explored the links between preimmigration beliefs of life success and postimmigration experiences and their influence on acculturative stress among a group of parents who recently immigrated with their children from three non-English speaking countries-Bangladesh, India, and Pakistan-to the United States. The respondents, 75 sets of parents residing in New York City, participated in semistructured qualitative interviews. Discrepancies between the parents' anticipated life success in the United States and actual experiences after immigration were associated with the parents' expectations of their children fulfilling parents' own dreams of success. Two criteria specific to Asian culture that guided parental expectations were the responsibility of children in enhancing family pride and the role of education as a way to advance through the social class and the caste systems. Implications for understanding immigrant parents' sociocultural contexts, the potential negative impact of unrealistic expectations on children's development, and the significance of acculturative stress for parents as well as their children were discussed.     

Looking after well siblings of adolescent girls with anorexia: an important parental role

BACKGROUND: Research has suggested that well siblings of children with chronic and life-threatening illnesses are at risk for negative outcomes and that parents' responses to the illnesses can influence the adaptation of well siblings. Yet, parents' efforts to look after well siblings in the context of illness are rarely considered in literature about sibling adaptation. The importance of attending to the needs of well siblings was a major theme to emerge from a qualitative analysis of the experiences of parents of adolescent girls with anorexia nervosa. METHODS: In-depth interviews were conducted with 24 parents of adolescent girls with anorexia and analysed using grounded theory method. RESULTS: The data indicated that parents viewed caring for well siblings in the context of anorexia as an important role and responsibility. Parents reported making conscious and active efforts to look after well siblings by: maintaining normality; compensating for changes to routines; protecting siblings; providing emotional support; and managing the consequences. CONCLUSIONS: This paper provides a picture of the actions parents take to help well siblings adapt to anorexia in the family. Further research is needed to develop and expand this understanding to families experiencing a wide range of chronic and life-threatening illnesses. The findings underline the importance of clinical attention and further research into the critical parental role of caring for well siblings.     

Families' experiences of caring at home for a technology-dependent child: a review of the literature

Recent medical advances have led to the emergence of a group of chronically ill children who are dependent upon technology for their survival. Many of these children are cared for at home by their parents. This paper presents an overview of the literature that has examined the experiences of families caring for a technology-dependent child at home. The social, emotional and financial impact on families and their perspectives on the services supporting them at home is described. The paper concludes by identifying areas where further research is needed.     

Children of parent(s) who have a gambling problem: a review of the literature and commentary on research approaches

Problem gambling is becoming an increasingly widespread and damaging social and health problem. As opportunities for gambling become more accessible, especially through lotteries and electronic gaming machines, it is likely that more people will develop serious gambling problems. Given the worldwide increasing spending on gambling activities and the increasing number of problem gamblers, it is unfortunate but likely that the children who grow up in problem gambling families will become an important area of concern for child health and social workers. Considerable research has been undertaken into problem gambling and the adult problem gambler, but within the gambling and child health literature there is almost no recognition of the experiences of children who live in problem-gambling families. Drawing on the findings of the landmark Productivity Commission Report, this review explores the marked increase in gambling and its social effects, especially from the Australian perspective. The damaging social effects of problem gambling on families and children are reviewed and the comparative invisibility of children and young people in such research is discussed. The pervasive influence of developmentalism is critiqued and highlighted in relation to the exclusion of children's perspectives from our research understandings. The review concludes by proposing that adoption of some of the emerging 'new paradigm' approaches to childhood and children's experiences could markedly enhance our understandings of the lives and experiences of this significant group of children and young people.     

Parents' Experiences of Caring for Children with Autism and Attending a Touch Therapy Programme

The aim of this qualitative study was twofold: (1) to explore parents' experiences of caring for children with autism; and (2) to determine whether attending a touch therapy programme (TTP) was of value. The sample comprised 10 parents (one father and nine mothers) of children (one female and nine male) with autism. Parents were interviewed before and immediately after the 8-week programme. Results showed that autism dominated the lives of parents and their family. Family functioning was disturbed and marital relationships became strained for some parents. Family outings were rare and children's demands persisted 24 hours a day. Parents felt isolated, frustrated and bewildered. The TTP was adjusted to meet more closely the needs of children and their parents. Parents valued the opportunity to learn a practical skill on the TTP. Moreover, touch therapy appeared to be relaxing and enjoyable for both parent and child, facilitating communication and closeness.     

Parenting a young person with mental health problems: temporal disruption and reconstruction

The article explores the experiences of parents living with a young person with mental health problems. Qualitative interviews were conducted with 25 parents (18 mothers and 7 fathers) whose child had a diagnosed psychiatric condition. It is argued that the parents engaged in a form of narrative reconstruction of their dual roles as parents and carers as they tried to make sense of the illness in their lives by reconstructing their past, present and future experiences. The concept 'responsibility' was threaded through the parents' narratives and is discussed in relation to three key dimensions - moral responsibility; causal responsibility; and responsibility for self. It is argued that the moral imperative to care for their child was the dominant theme in the parents' narratives but that this was challenged by their lack of knowledge of psychiatric conditions; their interactions with healthcare professionals; their relationships with their child; and their difficulties in coping with the extended parental responsibility that arose from their caring role.     

Parental Perspectives on Curriculum Priorities for their Young Children with Disabilities

Many parents of children with disabilities in Singapore have enrolled their children in school settings. Local literature is however lacking on what parents would like their children to learn at school. This pilot study examined parental perspectives on how much they valued three different curriculum skill areas for their young children with disabilities: functional academics, functional life skills, and social relationship skills. In addition, parents were asked to indicate whether they expected priority skill items within the three curriculum areas to be performed with assistance or independently. Results indicate differences in the parents' ratings of the curriculum skill areas. Parental expectations of their children's performance of priority skills across the curriculum areas also differed. Implications are discussed concerning parental input into curriculum, teachers' collaboration with parents to address curricular issues, and directions for research and practice.     

Examining HIV-positive parents' disclosure to their children: a biopsychosocial approach

In the post HAART era, the biopsychosocial issues now facing HIV-positive parents concerning disclosure of their status to their children need to be understood in the context of chronic disease. This article describes the experiences of 101 adult HIV-positive urban in-treatment mothers and fathers of school-age children on disclosure, psychological distress, social support, and symptom severity. Key variables associated with parents' HIV disclosure were the age of parent and of children in the household, parents' HIV-related symptoms, and parent ethnicity. Cultural and maturational, rather than psychological or social factors were significantly related to parents' HIV disclosure.     

Parents' experiences of living with a child with hydrocephalus: a cross‐sectional interview‐based study

Background

Shunts, the main treatment for hydrocephalus, are problematic because they frequently malfunction. Detecting shunt malfunction is challenging because symptoms are similar to those of common childhood illnesses, particularly viral infections. Parents are responsible for identifying shunt malfunction and responding accordingly. Understanding parents'' experiences has the potential to improve parent–professional collaboration and the management of the child''s condition.

Aim

To explore parents'' experiences of living with a child with hydrocephalus and their decisions when they suspect shunt malfunction.

Design and methods

A cross‐sectional interview‐based survey using qualitative methods was undertaken. Twenty‐five parents participated in the interviews. Framework approach underpinned data analysis.

Findings

Three concepts, ‘uncertainty’, ‘developing expertise’, and ‘a normal life’, were identified. These concepts were dynamic in nature as parents learned through experience, adapted to changes in their child''s health status and made decisions about their needs. Uncertainty because of the unpredictability and life‐threatening nature of shunt malfunction dominated parents'' accounts. Through experience, parents learned to differentiate between symptoms that suggested a shunt problem and those of other childhood illnesses, but perceived their expertise was not always valued by health professionals or used to inform clinical decisions. Decisions about where or when to seek advice related to prior experiences of health‐care services and minimizing disruption for the whole family.

Conclusion

Parents can recognize illness symptoms suggestive of shunt malfunction and want to collaborate with health professionals about the management of their child''s condition. Collaboration with parents requires health professionals to listen to parents'' concerns and value their experiences.     

Associations among social capital, parenting for active lifestyles, and youth physical activity in rural families living in upstate New York

While emerging research supports a positive relationship between social capital and youth physical activity (PA), few studies have examined possible mechanisms explaining this relationship and no studies have focused on rural youth. In this study, we examined parents' support of children's PA as an intermediary factor linking social capital and youth PA in a largely rural cross sectional sample of American children aged 6- to 19-years and their parents/guardians (N=767 families) living in upstate New York. Parents completed a self-administered survey assessing demographic factors, perceived social capital, support for children's PA, and children's PA including time spent outdoors and days per week of sufficient PA. Structural equation modeling was used to test the hypothesis that higher social capital is linked with higher parental support for PA and, in turn, higher PA in children. Analyses were conducted separately for younger (6-12 years) and older (13-19 years) children and controlled for demographic factors (child age, household education, participation in a food assistance program) and perceived neighborhood safety. Anticipated relationships among social capital, parents' activity-related support, and children's PA were identified for older, but not younger children. Findings suggest that parent support for children's PA is one possible mechanism linking social capital and youth PA and the parents of adolescents may rely more heavily on cues from their social environment to shape their approaches to supporting their children's PA than parents of younger children.