Mothers' perceptions of parenting children with disabilities

PURPOSE: To describe how mothers of children with physical disabilities identified their parenting strengths and weaknesses, encouraged their child's social skills and learning, nurtured and disciplined their child, and perceived their parenting successes and problems. DESIGN: Grounded theory. METHODS: Focused telephone interviews were conducted with mothers of preschool to elementary schoolage children with mild to moderate physical disabilities. The mothers were asked what they were doing well and "not well" in parenting their disabled child, their difficulties, their child's preparation for other children's questions/teasing, their encouragement of social skills and learning, and their discipline and nurturance. RESULTS: The theory that emerged from the data was parental straddling, which occurred on three levels. Parents were living in the past and the present, striving to view their child as "normal" when, in fact, the child was disabled, and were simultaneously dealing with their own and their child's issues and feelings. CLINICAL IMPLICATIONS: Nurses need to understand the complexity of the parents' straddling their roles and tasks. They can provide needed emotional support by allowing parents to express their fears and feelings in an atmosphere of nonjudgmental acceptance. Nurses can prepare parents for anticipated grief work, reassure them that their experiences are expected and normal, reinforce their use of normalization strategies, and help them separate their own from their child's issues and feelings.     

Parenting and childhood behavior problems: mothers' and fathers' voices

Through thematic analysis of interviews, we explored parents' perceptions of their child's behaviors and their own parenting. A purposive sample of four mothers and four fathers who reported behavior problems for their 7(1/2) year-old-child was selected from a larger study. Parents appraised their child positively despite episodic behavior problems, and described parenting in the context of financial difficulties, marital conflict, chronic illness, lack of support for parenting, and abuse in the parent's family of origin. Data suggest a need for timely mental health services to assist parents with managing their child's behaviors within the context of the family's situation.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

The Buffering Effect of Resilience upon Stress, Anxiety and Depression in Parents of a Child with an Autism Spectrum Disorder

The possible buffering effects of psychological resilience on stress, anxiety and depression associated with parenting a child with an Autism Spectrum Disorder (ASD) were investigated in 73 mothers and 35 fathers who had at least one child with an ASD and who completed a questionnaire about their experiences as parents. Mothers were significantly more anxious and depressed than fathers, and reported being “stretched beyond their resources” more frequently than fathers. Both mothers and fathers reported clinically significant anxiety and depression between three and five times the rate reported in the normal adult population. Moderation analysis showed that psychological resilience acted as a buffer against the development of elevated anxiety and depression associated with high levels of daily stress from parenting. Further, although the daily stress of parenting a child with an ASD was associated with quite severe anxiety and depression, even relatively low levels of resilience buffered against this anxiety and depression. Suggestions are made for assisting parents to develop psychological resilience in dealing with the stress associated with parenting their child with an ASD.     

Reducing Child-Related Negative Attitudes,Attributions of Hostile Intent,Anger, Harsh Parenting Behaviors,and Punishment Through Evaluative Conditioning

Six studies explored the extent to which evaluative conditioning (EC) can change adults’ child-related attitudes and expectations. A subset of studies also investigated the extent to which EC can change child-related attributions of hostile intent, anger, use of harsh discipline, and use of punishment. An initial study demonstrated that a brief EC procedure increased positive attitudes, decreased negative attitudes, and decreased expected need for future child discipline; findings that were replicated in five additional studies. A randomized controlled trial demonstrated these findings were present in the EC condition, but not in a control condition. Increases in positive child attitudes and decreases in the expected need for future child discipline (but not decreases in negative child attitudes) were maintained at a follow-up assessment. EC increases in positive attitudes generalized to child stimuli similar to those used in the EC procedure (exemplars), but no other EC-induced changes were found for exemplars. EC reduced child-related attributions of hostile intent, anger, use of harsh verbal discipline, use of harsh physical discipline, and use of punishment for ambiguous child behaviors. There was no evidence that EC effects were due to demand characteristics and little evidence that EC effects were moderated by demographic characteristics. It is yet to be determined whether the observed EC changes can be produced when a parent’s own child is used in the EC procedure and whether EC can produce changes in negative parenting behaviors that are maintained across time. The possible use of EC as an adjunct to existing parenting programs is discussed.     

Hardship, dedication and investment: an exploration of Irish mothers commitment to communicating with their children with cerebral palsy

This qualitative study investigated the experiences of mothers who have a child with communication difficulties resulting from cerebral palsy (CP). There is a dearth of information about parents' experiences of having a child with CP and communication difficulties. Three participants, whose children had moderate or severe CP and communication difficulties, were recruited from a voluntary organization. Participants were interviewed using an in-depth, semi-structured interview guide. Interviews were audio-recorded, then transcribed and subsequently analysed using Grounded Theory methods. Five main themes emerged, combining to form the core category of mothers dedicating their attention to their children . The information gleaned from this study could have important implications for nurses involved in facilitating communication, including speech and language therapists, occupational therapists and registered nurses. By becoming more aware of the experiences of parents with a child with CP and communication disorders, nurses may be better able to plan and implement therapy and also support communication aims. The study concludes with a discussion of further research avenues, suggesting that a study investigating the experiences of parents of children with other types of physical disabilities affecting communication should be conducted to determine the similarities and differences of parents of children with other kinds of disability. A similar study with a larger sample could be conducted to validate the findings of the current study.     

Problem-solving skills training as a supplement to behavioral parent training

This study evaluated the effectiveness of problem-solving training as an adjunct to parenting-skills training in a group program for self-referred parents concerned about child behavior problems. Fifty-three parents were randomly assigned to either parent training + problem-solving Training (n = 221), parent training + extra discussion (n = 16), or to a waiting list control group (n = 16). At posttest, both treatment groups demonstrated significant improvements in parenting behaviors as measured by a situation test of behavioral parenting skills, and by parent self-report of punitiveness. Both treatments also resulted in significant improvements in child behavior problems as measured by parent reports of three child behaviors of concern to them. On the other hand, only the parenting skills + problem solving-skills training program resulted in significant reductions in the intensity of the wider range of child behavior problems sampled by the Eyberg Child Behavior Inventory. Also, only the program with supplementary training in problem solving resulted in significant improvements in parent attitudes concerning the children's adjustment and character (Parent Attitudes Test), and concerning parents' own functioning in the parental role (Parenting Stress Index — Parent Domain). At 4- to 6-month followup, treatment gains were maintained in both treatment groups on four of seven outcome variables, but there were no statistically significant differences between the two groups. The implications of these results for preventive programs are discussed, as are the limitations of the study.This article is based on the doctoral dissertation of the first author at De Paul University. The cooperation and support of the staff at Kaiser Permanente's Los Angeles Medical Center is gratefully acknowledged. The assistance and ideas of Irwin Sandler in reviewing a draft of this article and of two anonymous reviewers are also acknowledged.     

Moving into Parenthood: A Program for New Adolescent Mothers Combining Parent Education With Creative Physical Activity

ISSUES AND PURPOSE. To describe a school-based program combining traditional parent education with creative physical activity classes to assist newly delivered adolescent mothers to develop positive parenting behaviors while remaining in school.
CONCLUSIONS. The program contains sessions on parenting information, creative coping strategies, fitness, and role modeling of positive parenting behaviors to help young mothers learn healthy parenting skills as they continue in their own adolescent development.
PRACTICE IMPLICATIONS. The content and teaching strategies can be adapted for individual or group clinical work with teen mothers and their infants in a variety of community settings as well as in school-based healthcare programs.     

Parenting behaviors of African American and Caucasian families: parent and child perceptions, associations with child weight, and ability to identify abnormal weight status

This study examined the agreement between parent and child perceptions of parenting behaviors, the relationship of the behaviors with the child's weight status, and the ability of the parent to correctly identify weight status in 176 parent-child dyads (89 Caucasian and 87 African American). Correlational and regression analyses were used. Findings included moderate to weak correlations in child and parent assessments of parenting behaviors. Caucasian dyads had higher correlations than African American dyads. Most parents correctly identified their own and their child's weight status. Parents of overweight children used increased controlling behaviors, but the number of controlling behaviors decreased when the parent expressed concern with their child's weight.     

Promoting positive parenting: an annotated bibliography

Positive parenting is built on respect for children and helps develop self-esteem, inner discipline, self-confidence, responsibility, and resourcefulness. Positive parenting is also good for parents: parents feel good about parenting well. It builds a sense of dignity. Positive parenting can be learned. Understanding normal development is a first step, so that parents can distinguish common behaviors in a stage of development from "problems." Central to positive parenting is developing thoughtful approaches to child guidance that can be used in place of anger, manipulation, punishment, and rewards. Support for developing creative and loving approaches to meet special parenting challenges, such as temperament, disabilities, separation and loss, and adoption, is sometimes necessary as well. This annotated bibliography offers resources to professionals helping parents and to parents wishing to develop positive parenting skills.     

Parenthood experiences during the child's first year: literature review

BACKGROUND: Raising a child is probably the most challenging responsibility faced by a new parent. The first year is the basis of the child's development and is significant for growth and development. Knowledge and understanding of parents' experiences are especially important for child health nurses, whose role is to support parents in their parenthood. AIM: The aim of this review was to describe mothers' and fathers' experiences of parenthood during the child's first year. METHOD: A literature search covering 1992-2002 was carried out using the terms parenthood, parenting, first year, infancy and experience. Of the 88 articles retrieved, 33 articles (both qualitative and quantitative) met the inclusion criteria and corresponded to the aim of this review. The data were analysed by thematic content analysis. FINDINGS: Being a parent during the child's first year was experienced as overwhelming. The findings were described from two perspectives, namely mothers' and fathers' perspectives, since all the included studies considered mothers' and fathers' experiences separately. The following categories were identified concerning mothers: being satisfied and confident as a mother, being primarily responsible for the child is overwhelming and causes strain, struggling with the limited time available for oneself, and being fatigued and drained. The following categories were found for fathers: being confident as a father and as a partner, living up to the new demands causes strain, being prevented from achieving closeness to the child is hurtful, and being the protector and the provider of the family. The unifying theme for these categories was 'living in a new and overwhelming world'. CONCLUSION: There is a need for nurse interventions aimed at minimizing parents' experiences of strain. A suggested intervention is to find a method whereby child health nurses' support would lead to parents becoming empowered in their parenthood.     

Management of childhood constipation: parents' experiences

BACKGROUND: Constipation in childhood is common and places a burden on child health services. Whilst constipation can have a variety of causes, for most children it is usually non-organic and requires limited intervention. It has been suggested that health professionals can resent consultations for such a common problem, believing them to be inappropriate. However, they can underestimate the impact of this condition, leading to adverse clinical effects, as well as parental dissatisfaction. Little research has explored parents' experiences of consulting health professionals about the management of childhood constipation. AIM: To explore parents' experiences of consulting health professionals about management of childhood constipation and to use the findings to inform more effective therapeutic encounters when responding to parental concerns. METHODS: A phenomenological approach was adopted, using in-depth interviews with parents of 14 children receiving health interventions for constipation. FINDINGS: Six themes emerged from analysis including: 'enduring and extreme constipation', which reflected the substantial and sustained impact of the child's constipation; 'dismissed and fobbed off', which captured parents' feelings that their concerns were frequently dismissed by health professionals; 'asserting the need for action', a perception that they had reached a point at which they had to demand some intervention; and 'validation and acknowledgement', which reflected acknowledgment that, finally, their concerns for their child had been taken seriously and acted on. DISCUSSION: The findings indicate a failure by some health professionals to appreciate fully the significance of childhood constipation, thereby appearing to be unconcerned and insensitive to the needs of child and family. The impact of this is a potential loss of trust in health professionals by parents, which can then have implications for how they perceive and access health services for management of this common childhood problem. The findings offer an insight into parental experiences and indicate the need for a more sensitive approach during health consultations.     

The relationship between parent emotion, parent behavior, and health status of young African American and Latino children

The purpose of this study was to examine the relationship between parent emotion and behavior and the functional health status of young African American and Latino children. Parents were interviewed, in English or Spanish, about their child's functional health status, parents' depression, and their parenting behaviors. Standard measures used included the Functional Status IIR, the Center for Epidemiologic Studies Depression Scale, and the Parent Behavior Checklist. One hundred ninety-six children's parents attending a nurse-managed, primary care clinic in an underserved area of San Francisco participated. Multivariate analysis showed that higher functional status was related to more nurturing (p < .05). Lower functional status was related to more discipline (p < .01) and increased parental depression (p < .01). Nurses, across all settings, play an integral role in assessing and promoting healthy child development and family functioning. Implementing a rapid screening test for depression and further assessment of parenting behaviors could identify those needing more assistance in developing positive parenting skills.