Just Getting on with it: Exploring the Service Needs of Mothers Who Care for Young Children with Severe/Profound and Life‐Threatening Intellectual Disability

Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life‐limiting conditions. Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements. Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as ‘haphazard’ and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy. Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home‐based respite, which would offer them short breaks to rest or engage in part‐time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.     

Positive Experiences of Mothers and Fathers of Children with Autism

Background The present study examined the positive experiences of parents raising school‐aged children with autism within the context of parenting stress. Materials and Methods Participants included 23 mother/father pairs raising children with autism (ages 5 to 11 years, M = 7.39). Parents completed measures of parenting stress and positive experiences of raising their children. Results Consistent with previous research in a pre‐school aged population of children with autism, mothers reported significantly more positive experiences than did fathers. Mothers’ and fathers’ reports of their positive experiences were negatively related to their reports of parenting stress. Fathers’, but not mothers’, positive experiences were negatively related to their partners’ reports of parenting stress. Conclusion Findings are discussed within a positive psychology framework suggesting that a focus on positive experiences may buffer against negative well‐being.     

Sense of Coherence,Parenting Attitudes and Stress among Mothers of Children with Autism in Hong Kong

Background The moderating and mediating relationships among sense of coherence, parental attitudes and parenting stress for caregiving parents of children with autism were tested. Materials and Methods One hundred and fifty‐seven mothers of children with autism recruited from representative community service centres in Hong Kong completed the Chinese versions of Sense of Coherence Scale (SOC), Confidence and Acceptance subscales of Parent‐Attitude Survey Scales and Parenting Stress Index Short Form. Results Accounting for mothers’ demographic background, SOC showed a moderating effect with child's symptoms and parenting stress. Mothers with a strong SOC perceived lower stress than their counterparts even when their children presented with more severe autistic symptoms. Two proximal factors in parenting, parental confidence and acceptance of the child, were found to partially mediate SOC and stress. Conclusions The stress experience of mothers of children with autism is related strongly to a global sense of coherence as well as more specific parenting attitudes.     

From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum

Background For parents of disabled children, the role of advocate often develops to a level of frequency and complexity that other parents do not usually face. This paper considers whether this high level of advocacy translates into a form of activism on the part of mothers and if so, why this shift might occur. Materials and Methods The broader study from which the data are taken aimed to explore the experiences of living with autism. Qualitative methods were used to understand how participants made sense of their lives and negotiated the social world. This analysis is based on interviews with 36 mothers of children on the autism spectrum. Results Most mothers adopted an enhanced advocacy role acting either independently or collectively through involvement with support groups. In both cases, some mothers demonstrated an activist role and extended their efforts towards campaigning for change outside of their families. Conclusions Mothers’ experiences do not sit comfortably within existing articulations of activism but suggest that advocacy and activism may be experienced on a continuum. For many mothers, advocacy and activism are a major part of the experience of mothering a disabled child yet this remains a largely unrecognized role.     

Effects of a father-based in-home intervention on perceived stress and family dynamics in parents of children with autism

Parents of children with autism report high rates of stress. Parental differences in stress are inconsistent, with most research indicating that mothers report higher levels of stress than fathers. We explored parental differences before and after an in-home training program. Fathers were taught an intervention designed to improve their child's social reciprocity and communication; they then trained mothers. Stress was assessed with the Parenting Stress Index-Short Form, and family dynamics was assessed with the Family Adaptability and Cohesion Evaluation Scales II. Both mothers and fathers reported high preintervention levels of stress. After intervention, fathers' stress was reduced, but not significantly, possibly because of the variability in fathers' scores; mothers' stress scores were significantly reduced. Parenting styles were significantly different before and after intervention. Interdisciplinary teams, including occupational therapists, nurses, and special educators, can work.together to have a positive impact on the lives of families of children with autism.     

Organizational differences in early child health care -- mothers' and nurses' experiences of the services

Scand J Caring Sci; 2012; 26; 161–168 Organizational differences in early child health care – Mothers’ and nurses’ experiences of the services Aim: The aim of this study was to evaluate parents’ and nurses’ perceptions of the child health services (CHS) in relation to whether the nurse worked exclusively with children (focused‐child health centre, CHC) vs. with people of all ages (mixed‐CHC). Method: Information about parents’ perceptions about the CHS was acquired by a questionnaire intended for the mothers of 18‐month‐old children. One thousand thirty‐nine answered in the baseline 2002–2003 and 996 in the follow‐up 2004–2005. The nurses answered a special questionnaire aimed to obtain knowledge about their satisfaction with their work. Eighteen CHCs were chosen from the county of Uppsala and eighteen from other Swedish counties. The CHCs were chosen from areas with poor psycho‐social status. The data were collected by questionnaires to mothers and nurses, and the analysis used the chi‐square test, t‐test and logistic regression. The study was approved by the Research Ethics Committees of the universities involved. Results: Mothers were more satisfied, and the nurses found their work tasks easier, at CHCs where the child health nurse worked exclusively with children, compared with mothers and nurses belonging to CHCs where the nurses provided care to people of all ages. Conclusion: The findings indicated that nurses working exclusively with children, being able to concentrate their time and knowledge on a specialized field, develop a more solid child health competence. There are strong reasons to consider introducing ‘exclusive’ CHCs in psycho‐socially vulnerable areas, which would probably make the services more effective. However, intensified education may modify the drawbacks of mixed‐CHCs.     

孤独症患儿母亲的亲职压力与社会支持、应对方式的相关性研究

目的 探讨孤独症患儿母亲的亲职压力与社会支持、应对方式的关系.方法 采用亲职压力指标简表、社会支持评定量表和简易应对方式问卷对105名孤独症患儿母亲(观察组)和100名正常儿童母亲(对照组)的亲职压力进行调查,并分析亲职压力与社会支持、应对方式的相关性.结果 孤独症患儿母亲的亲职压力总分和各维度得分均显著高于正常儿童母亲;亲职压力与社会支持成负相关.结论 孤独症患儿母亲普遍存在较高水平的亲职压力,社会支持系统可降低亲职压力水平.     

孤独症患儿母亲的亲职压力与社会支持、应对方式的相关性研究

目的探讨孤独症患儿母亲的亲职压力与社会支持、应对方式的关系。方法采用亲职压力指标简表、社会支持评定量表和简易应对方式问卷对105名孤独症患儿母亲（观察组）和100名正常儿童母亲（对照组）的亲职压力进行调查,并分析亲职压力与社会支持、应对方式的相关性。结果孤独症患儿母亲的亲职压力总分和各维度得分均显著高于正常儿童母亲;亲职压力与社会支持成负相关。结论孤独症患儿母亲普遍存在较高水平的亲职压力,社会支持系统可降低亲职压力水平。     

Maternal Employment and Family Responsibilities: the Perspectives of Mothers of Children with Intellectual Disabilities

Over recent decades, there has been a substantial increase in the proportion of women in the workforce with dependent children. However, this trend is not evident for mothers of children with disabilities. Their employment levels are greatly reduced. The present paper examines the nature of the restrictions which affect the employment participation of these mothers and explores the meaning work has for them. The data presented in this paper were derived from qualitative interviews with 18 mothers of children with disabilities aged between 5 and 15 years. These mothers found employment difficult. They encountered unusual time demands, and a lack of adequate and affordable child care. Furthermore, they felt that their employment opportunities were restricted by attitudes prevalent in society concerning appropriate roles for women, especially mothers of children with disabilities. The lack of opportunities to engage in employment led, in varying degrees, to feelings of isolation, a lack of fulfilment and low self‐esteem. The mothers felt that they were on the periphery of society with little release from the pressures of caring. Mothers who had part‐time jobs often did poorly paid work of low status, thereby encountering few opportunities to use their skills and abilities to the full. Those who attempted a full‐time job experienced stress from the dual demands of home and work, and from a fear that they were failing as mothers. The present paper highlights areas which require attention to improve the employment experience of these mothers.     

Fathers' Perceptions of Their Roles During In‐Home Training for Children With Autism

PROBLEM: Currently, most research related to parents of children with autism has focused on mothers, and little is known about the fathers' interaction with their children. PURPOSE: The purpose of the qualitative study is to assist in more fully describing and understanding fathers' perceptions of their roles, relationships with their children with autism, and participation in an in‐home training intervention designed to enhance parent–child interactions as well as child language and social interactions. METHODS: In depth semi‐structured interviews with 10 fathers were conducted at home, videotaped, transcribed, and reviewed for common themes and significant statements FINDINGS: Five common themes were discovered, fathers expressed their view of their roles, and fathers reported the father‐directed in‐home intervention was effective in enhancing father–child relationships. CONCLUSION: Communication between fathers and their children appears to be the key to a successful relationship. Although verbal communication deficit is a predominant feature of autism, these fathers noted other ways of effective communicating including time spent playing or just being with the child.     

The lived experiences of mothers who have children with congenital abnormalities in the Gert Sibande district

BackgroundMothers are regarded as primary care givers. The experience of having a child with congenital abnormality may have an impact on their psychological well-being. It was observed that the psychological well-being of mothers is often unattended by health professionals, including nurses and their families. Mothers make adjustments in their daily lives to ensure the child’s activities of daily living are attended. Therefore, this raises the need for the experience of mothers who have children with congenital abnormalities in the Gert Sibande district to be explored. Gert Sibande was chosen because it has been observed that several mothers who visit the clinic and outpatient department have children with congenital abnormalities.ObjectivesThe purpose of this study was to explore and describe the lived experiences of mothers who have children with congenital abnormalities.MethodA phenomenological study was conducted. Purposive sampling of 12 participants was done. The study used adjusted ecological model of health for guidance. Data gathering was done by self-report using unstructured face-to-face interviews until data saturation was reached.ResultsFive themes emerged from the study, which include ‘being hurt emotionally’, ‘sense of guilt’, ‘acceptance’, ‘support from family’ and ‘community reaction to the congenital abnormality’. The findings show that mothers were affected by having children with congenital abnormalities.ConclusionThe study revealed that mothers of children with congenital abnormalities experienced devastation, denial, guilt and lack of acceptance of their child’s condition. The study indicates that mothers require support from health care professionals, family and the community.     

Acute childhood illness at home: the parents' perspective

This critical review of British literature explores the phenomenon of acute childhood illness at home from the parents' perspective. The Literature was searched using four CD-ROM databases: CINAHL, MEDLINE, ASSIA and PSYCHLIT, augmented by hand searching of current journal issues. Sandelowski's (1995) stages of qualitative data analysis were used to develop a rigorous approach to conducting qualitative overviews. The majority of childhood illness is of short duration and takes place in the child's own home. Yet the research which addresses this area is limited. Mothers constantly monitor their child's health, identifying illness as a change in behaviour of the child from their perception of normal. Their usual response to illness is nonprofessional care, including general nursing care and 'over the counter' medicines. When mothers do seek help this is usually from the family doctor. Mothers are often dissatisfied with the help and advice they receive. This is partially explained by the mismatches which occur concerning the perceptions of mothers and of health care professionals regarding appropriate use of services and the needs of these mothers and their children. The literature reviewed indicates a need to address the service users perceptions of the services provided. Areas where further research is required are identified.     

Utilization of parenting groups and consultation services as parenting support services by Japanese mothers of 18 month old children

Aim: To clarify the factors related to the utilization of parenting groups and consultation services by mothers with children aged 18 months. Methods: This was a cross‐sectional study using a self‐report questionnaire survey at health examinations in five health centers of an urban city in Tokyo, Japan, from July to September 2003. The final study population was comprised of the 371 mothers who provided information on both demographics and the utilization of services. Results: Of these 371 mothers, 166 participated in parenting groups since the birth of their 18 month old child. Logistic regression analyses indicated the following factors related to such participation: past experience in the use of services provided by the local government, trust in the specific group, and worries about their children. Participation in the parenting groups was not related to child‐rearing anxiety or mental health status. The participants indicated that the groups provided friends and child‐rearing information and alleviated stress. Worries about children and past experience in the use of public services would enhance the utilization of services. Conclusion: It is essential for service‐providers to offer services specific to the situation or desires of mothers. Mothers might need both consultation services and support groups to reinforce the mother–child relationship, for social support, and to freely discuss worries with both professionals and peers.     

Mothers of Children Who have an Intellectual Disability: Their Attributions,Emotions and Behavioural Responses to Their Child’s Challenging Behaviour

Background This paper examines the application of Weiner’s attribution model to the responses of mothers to the challenging behaviour of their children who have an intellectual disability. It was expected that the attributions, assignment of responsibility and emotional and behavioural responses of mothers of children with an intellectual disability would vary as a function of the child’s behavioural topography and level of intellectual disabilities. The paper further examines whether, as suggested by Weiner’s model, anger mediates the effect of attribution of responsibility on likelihood of punishment as an intervention. Method Fifty‐six mothers of children with an intellectual disability rated their attributions, assignment of responsibility and emotional and behavioural responses to three vignettes describing challenging behaviours. Results Mothers rated their children as significantly more in control of, responsible for, and felt significantly more angry about aggressive behaviour than stereotypic behaviour and were significantly more likely to punish aggressive behaviour than self‐injurious or stereotypic behaviour. Regression analysis suggests that mothers who assign more responsibility to their child were more likely to consider punishing their child and that this relationship is mediated by anger. Conclusions The study offers support for some aspects of Weiner’s attribution model with this group of parents. Implications for clinical work with parents of children who have an intellectual disability are discussed.     

Children's knowledge of cancer diagnosis and treatment: Jordanian mothers' perceptions and satisfaction with the process

ARABIAT D.H., ALQAISSI N.M. & HAMDAN‐MANSOUR A.M. (2011) Children's knowledge of cancer diagnosis and treatment: Jordanian mothers' perceptions and satisfaction with the process. International Nursing Review 58 , 443–449 Background: The amount of information shared with children regarding their illness, as well as what knowledge children are entitled to know, varies widely among cultures. Aims: This study aims to examine mothers' accounts of communication about cancer diagnosis to their children, how much children knew about their illnesses and how satisfied the mothers were with the method they used in communicating the diagnosis. Methods: Using semi‐structured interviews and open‐ended questions, 51 mothers attending paediatric oncology clinics in Jordan were interviewed. Content analysis was used to analyse the data. Findings: Mothers expressed a range of views about the forms of disclosure, including being clear about the diagnosis and its treatment and being secretive yet misconceptualizing the accounts of the illness. The median age for the children diagnosed with cancer was 11 years (interquartile range 7–16 years). Most of the mothers were offered no help with talking to their children about cancer diagnosis. Mothers who found it difficult to tell the news of the diagnosis to their children finally withheld the diagnoses from them. Those same mothers were unhappy and uncomfortable with the communication method they had used with children. Conclusion: This study emphasized the role of nurses' interaction with their child patients diagnosed with cancer. Nurses should not have an opinion about how and what children need to know about their illness, and preferably should take an active role in the process of communication between mothers and their children. Further work and research are needed in this field.     

Children on the Autism Spectrum: Grandmother Involvement and Family Functioning

Background This study investigated associations between the presence of a child with autism or Asperger’s disorder in the family, family functioning and grandmother experiences with the goal of better understanding grandparent involvement in the lives of grandchildren on the autism spectrum and their families. Methods Mothers and grandmothers of children who were either typically developing or on the autism spectrum completed parallel forms of a grandparent involvement measure. Mothers reported on the functioning of the immediate family. Data were analysed via multilevel modelling with mother–grandmother dyads as the unit of observation. Results Autism spectrum disorders in children were associated with more flexible family functioning, lower levels of family satisfaction, greater grandmother difficulties and more grandmother information needs. Conclusions Participation of grandparents in diagnostic and treatment meetings and increased communication among family members may facilitate grandparent support and involvement in families with a child on the autism spectrum.     

A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi,Pakistan

Purpose.?Previous literature has highlighted marginalisation and stigma of children with disabilities in developing countries, but few studies have explored the central care-giving environment and the relationship of the mother and her child with disabilities in this context. A group of women caring for children with disabilities in a low income community in Karachi, Pakistan was identified for the study. The aims were: (1) to explore the influence children with disabilities have on the daily lives of their mothers, (2) to describe the factors which influence the care-giving capacity of mothers.

Method.?A participatory qualitative research design was implemented. A women's group of caregivers of children with disabilities was formed. Several different tools were used during the course of the group meetings to facilitate discussion including social mapping. A thematic analysis of issues around care-giving and the relationship between the mother and her child with disabilities was conducted.

Results.?In a society where women may experience restrictions in freedom of movement and decision making, caring for a child with disabilities enabled women to move beyond traditional boundaries in seeking health and education services for their children. However, the gain in empowerment was counter-acted by a lack of care-giving support, a lack of appropriate services for health, rehabilitation and education of children with disabilities and stigma creating anxiety and stress for women.

Conclusion.?While children with disabilities do have some positive effects on the lives of their mothers, there are many more factors which create anxiety for this group of mothers (including a lack of care-giving support and stigma). Community-based rehabilitation strategies should consider the care-giving environment of children with disabilities and shift from a child only to family focus. Interventions which support, empower and strengthen the capacity of mothers are essential for the well being of their children with disabilities.     

Health-related problems in a vulnerable population: pregnant teens and adolescent mothers.

Childbearing adolescents are susceptible to a myriad of health-related problems. For these youth, health-related problems include both physiological and psychological disease states that negatively impact both their own and their children's lives. Suicide attempts, parenting problems (including child abuse), domestic violence, poor birth outcomes, and sexually-transmitted diseases (including HIV) are just some of the problems encountered. This article focuses on the relationship between lack of social and environmental resources and the risk factors for health problems in adolescent mothers and provides recommendations for nursing assessment and intervention. The complex nature of the relationship between lack of resources and the many risk factors for health-related problems in the lives of childbearing adolescents makes comprehensive health care a requirement. Nurses in school-based clinics and community settings are in a unique position to provide access to the physical and mental health services necessary for pregnant adolescents and teen mothers.