Parental Experience with Treatments for Autism

Nineteen parents of children with autism were interviewed about their experiences with autism treatments. These parents had originally participated in an Internet survey of treatments for autism and were randomly selected to participate in the follow-up telephone interview. The questions focused on three current treatments that have varying empirical support in the research literature, namely Applied Behavior Analysis, Sensory Integration therapy, and a combination of Vitamin B6 and Magnesium. Most parents received information about these treatments from the Internet, other parents, and occupational therapists. In addition to recommendations from professionals and other parents to use a particular treatment, the study showed that ease of implementation, time commitment, and perceived effectiveness may also contribute to the continued use of treatments that lack empirical support. The findings highlight the need for parents to have access to unbiased, scientifically validated information about treatments for autism.     

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.     

The link between gastroenterology and autism.

References in the popular literature and media support a theory that gastrointestinal pathology may relate to autism. Parents often report their children as having gastrointestinal symptoms that surfaced about the same time autistic symptoms also appeared. The scope and range of information concerning autism available to the public is very extensive. Parents with children having autism are seen in gastroenterology and may request information related to the publicized connection between gastroenterology and autism. It is important for healthcare providers to be able to answer these questions based on the most recent research. The purpose of this article is to review an example of the current literature available to parents on this subject and compare this literature to relevant medical research.     

Anxiety and postoperative pain in children who undergo major orthopedic surgery.

Anxiety and pain are major concerns not only for children who undergo surgery, but also for their parents and health care professionals. A convenience sample of 74 adolescents who underwent major orthopedic surgery for repair of idiopathic scoliosis and their parents was used to investigate the relationships among children's and parents' preoperative and postoperative anxiety and children's postoperative pain. Age-appropriate versions of Spielberger's State-Anxiety scales measured children's and parents' anxiety, and a visual analog scale assessed children's pain intensities. Children's state anxiety increased from preoperative to postoperative levels, and their postoperative anxiety levels positively related to their pain intensities on days 2 and 4 following the operation. Parents' anxiety decreased from preoperative to postoperative levels, and their postoperative anxiety positively related to their children's postoperative anxiety. Studying both parents and children helped to explain the variance in children's self-reported anxiety. Parents' emotional states are important indicators of children's emotional states and, subsequently, their pain experience. The results of this study suggest that allowing children to assist in the assessment of their postoperative pain may help health care professionals better understand the subjective component of pain. The findings also emphasize the importance of including parents in future studies in which the aim is to understand children's behavioral responses and recovery outcomes.     

Examining unconscious bias embedded in provider language regarding children with autism

In healthcare settings, language used by healthcare providers can influence provider–patient encounters with individuals with autism spectrum disorder, impacting feelings of stigma and marginalization. This study highlights the unconscious biases healthcare providers might have regarding their patients with autism spectrum disorder and how those beliefs are articulated. Seven pediatric dentists participated in two focus groups to describe strategies to improve oral care for children with autism spectrum disorder. While completing the primary analyses, additional codes emerged related to healthcare provider biases; these data are the focus of this study. Three themes were identified: (i) “healthcare microaggressions” describe how healthcare providers portray their patients in subtly negative ways; (ii) “marginalization” denotes the use of exclusionary language identifying children with autism spectrum disorder as different; and (iii) “preconceptions” include comments that highlight biases about patients. The findings provide insight into the implicit biases that might be held by healthcare providers and how they manifest in language. Despite increased emphasis on cultural competency, healthcare providers might unconsciously use language that could negatively impact patient–provider rapport and increase stigma in already marginalized populations. Further research is necessary to explore how these biases could relate to quality of care.     

Health professionals' beliefs related to parental involvement in ambulatory care: an international inquiry

Changes in health care delivery in Canada and Europe, especially the shift to ambulatory care, have modified the care that children and parents receive and have prompted the need for a partnership alliance. The objectives of this exploratory study were to identify Canadian and Belgian health professionals' beliefs and attitudes towards parental involvement in their child's ambulatory care and to determine if these beliefs varied according to cultural background. Health professionals from both countries generally were in favor of parental involvement in their child's care, but are uncertain about its advantages and disadvantages. Facilitators and barriers mentioned by the health care providers were related to parents' abilities or their attitudes toward partnership, and they also expressed a need for more education on the subject. Results of this study indicate that health professionals working in ambulatory care are not fully ready to utilize parents as true partners in their interventions with children and families. Staff education is an important step towards the establishment and maintenance of a real partnership.     

Parents with first time major depression: perceptions of social support for themselves and their children

The aim of this study was to ascertain the perceptions of parents, with first time major depression, regarding the social support for themselves and their children. Eighteen parents, with children under the age of 19, were interviewed on admission to an inpatient unit and of these 16 were followed up 1 year later. In addition, the severity of parents' depression and their functional status was measured. The results showed that although the parents did regain their mental health and functional capacity to a certain extent, they nevertheless remained in a vulnerable position, increasing the strain on the whole family. The parents' and their children's social support was low and came mostly from outside the family. The parents were worried about their children, due to problems related to the depressive episode as well as ordinary teenage rebellion. Important questions concerned practical problems such as whether there was someone to take care of the children if the parent is incapable of doing so. There were also concerns pertaining to how the changed family situation might interfere with the child's natural development or whether depression was a question of heredity. This highlights the need to investigate the importance of social support for the family as a whole when one of them suffers from depression. There is a need for improved treatment of parental depression to reduce symptoms such as decreased functional status that may impair parenting. The study also emphasises the need for healthcare practitioners to assess multiple aspects of social support so that care planning will target all relevant domains.     

Raising an Autistic Child: Perspectives From Turkish Mothers

PROBLEM: Autism is an illness with severe deficits in reciprocal social interactions, imagination, communication, and restricted or unusual behavioral repertories that affect all areas of a child's life such as daily living activities, home/school life, and relationships with family members and others. Yet, there is much to be learned about the impact of this disorder on parents' experiences, and ways in which their lives are altered and ways that they can be assisted to better manage the home environment. METHODS: The purpose of this study was to explore and categorize the experiences of mothers having an autistic child using a phenomenological design in the qualitative tradition. Semistructured interviews were conducted with 43 mothers regarding their experiences with their autistic children. Data were analyzed with deductive content analysis based on coding, and were grouped into categories based on common themes. The distributions of common responses in categories were presented as percentages. FINDINGS: Based on this qualitative study, mothers expressed feelings of burden and stress because of their child's behaviors associated with autism, as well as their own role and future expectations, and the complexity of care needed by their children at home. CONCLUSIONS: This study provided new knowledge about the difficulties and experiences of mothers of autistic children in Turkey. The results underscored the needs of mothers who require support from family members, healthcare organizations, and society. The findings support the need for training programs for mothers and parents conducted by nurses and other healthcare professionals who have special knowledge and skill to provide education and modeling of therapeutic interventions.     

Comparisons of parent cardiovascular knowledge, attitudes, and behaviors based on screening and perceived child risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

The ergonomics of caring for children: an exploratory study.

BACKGROUND: Caring for one's children is among the most ubiquitous of occupations. However, few studies have examined the ergonomic risks involved in parents caring for children at home. PURPOSE: The purpose of this study was to identify the frequency, type, and severity of musculoskeletal symptoms in parents of children less than 4 years old. The study further examined the factors that contribute to musculoskeletal pain in this sample. METHODS: A convenience sample of 130 parents with children younger than 4 years old completed a seven-page survey that included questions related to the parents' demographics, their musculoskeletal discomfort, their performance of child-care tasks with high biomechanical risks (such as carrying a child in a car seat), and parents' perceived psychological strain related to caring for their children. RESULTS: Ninety-two percent (92%) of the providers were mothers. Sixty-six percent (66%) of the sample reported the presence of musculoskeletal pain. The parts of the body most affected were the low back (48%), neck (17%), upper back (16%), and shoulders (11.5%). Factors associated with musculoskeletal pain were performing child-care tasks defined as having high biomechanical risks (p = .001), the perception that caring for children is highly demanding (p = .003), and performing hobbies less than 1 hour per week (p = .04). Parents' working status, age, and participation in other daily activities were not significantly related to musculoskeletal discomfort. CONCLUSION: This study demonstrates the high prevalence of musculoskeletal pain in parents of children under the age of 4 years. It underscores the association between physical and psychological factors in the development of musculoskeletal discomfort. It suggests the need for occupational therapy wellness programs that focus on preventing musculoskeletal discomfort and providing support for the parenting role.     

Pilot of a workbook for children visiting a loved one in a hospice

A palliative care counsellor developed a workbook for use by children aged 5 to 14 years visiting a loved one in a hospice. This article reports the findings of a small qualitative pilot study exploring how children used the workbook, their views on it and the views of their families and hospice staff. The seven children in the study all enjoyed having the workbook. It provided opportunities for them to interact and build relationships with the staff and to become more involved in their visits to the hospice. Nurses and staff thought the workbook had the potential to help nurses and parents respond to questions or to stimulate discussion. Children used the workbook in different ways, highlighting the need for a flexible approach. It is essential when using such a tool that individual and family needs are respected. The study also raised issues regarding the need for training and emotional support for staff.     

孤独症患儿父母心理需求的调查分析

目的探讨孤独症患儿父母的心理需求及相应护理对策。方法运用自行设计的患儿家属心理状态调查表对80名不同职业、不同文化程度的儿童孤独症患儿父母的心理需求进行调查。结果调查对象最迫切需要的是能及早纠正孩子的异常行为。学历层次较低的患儿父母,他们更注重的是孩子异常行为的纠正,而对于与患儿间的交流时机、方式、内容和技巧运用方面的需求意识还有待提高。结论对患儿父母进行有效的心理干预及健康宣教能提高患儿父母对儿童孤独症的认知水平,促进父母与患儿的情感交流,减轻家长的焦虑。     

健康教育对首发精神分裂症患者预后的改善

目的 探讨孤独症患儿父母的心理需求及相应护理对策。方法 运用自行设计的患儿家属心理状态调查表对80名不同职业、不同文化程度的儿童孤独症患儿父母的心理需求进行调查。结果 调查对象最迫切需要的是能及早纠正孩子的异常行为。学历层次较低的患儿父母，他们更注重的是孩子异常行为的纠正，而对于与患儿间的交流时机、方式、内容和技巧运用方面的需求意识还有待提高。结论 对患儿父母进行有效的心理干预及健康宣教能提高患儿父母对儿童孤独症的认知水平，促进父母与患儿的情感交流，减轻家长的焦虑。     

Supporting parents of children with autism spectrum disorders to become informed consumers of evidence on speech pathology practice

The aim of this pilot study was to evaluate the effectiveness of an intervention program designed to help parents of children with autism spectrum disorders (ASD) to become informed consumers of evidence for speech pathology services. The program comprised an interactive workshop and the provision of written materials aimed at increasing the participants’ knowledge of evidence-based practice (EBP) principles and confidence discussing EBP with their children's speech pathologists. Using a repeated measures within-group design (pre/post) and mixed methods of analysis, the results indicate that the participants’ knowledge and confidence increased following their participation in the program. Qualitative analysis revealed that parents differed with regard to which component (workshop or written information) was most helpful. The results provide preliminary evidence to support the further development and testing of intervention programs aimed at supporting parents of children with ASD to become informed consumers of evidence-based speech pathology services.     

Exploring the role of partnership in the home care of children with special health needs: qualitative findings from two service evaluations

BACKGROUND: Advances in therapeutics and the increasing survival rate among premature infants means that more parents now have to adapt to caring at home for children with special health needs. Community paediatric nurses require a wide range of specialist skills and the concept of partnership appears to be foundational to their care of parents and children. OBJECTIVES: Drawing on data gathered during the course of two service evaluations of community paediatric nursing care of children with special health needs, this paper explores the extent to which a concept analysis of partnership can be verified empirically. EVALUATION METHODS: In-depth interviews were carried out with parents, a range of professionals and members of different agencies who received training from the nursing team. The sample comprised 17 parents and 20 professionals. FINDINGS: Respect for parental routine was strongly evidenced in both areas, was highly valued in the training of carers and contributed to mothers' confidence. Parents acknowledged that nurses' interactional strategies engendered trust, demonstrated respect for them and empathy for their child. These features of care resonate strongly with partnership attributes identified in the conceptual analysis. Nursing support of parents demonstrated a deep understanding of different styles of adult learning, of how to alleviate psychological and emotional stress and of parental vulnerability. In addition, there was evidence of extensive partnership working across health and social care boundaries. The findings demonstrated the wide range of such collaboration, the time necessary to make it work and the benefit that accrues to the families. CONCLUSIONS: It was possible to make empirical links with the partnership attributes identified in the concept analysis although the data highlight the complexity of some of the individual attributes. While there may be overlap between professional-parent partnership and partnership at the level of service co-ordination, there may also be important differences which merit further enquiry. In terms of policy and practice, findings suggest that partnership in the community setting is central to effective service delivery but is knowledge, skill and resource intensive.     

“More than blowing bubbles”: What parents want from therapists working with children with autism spectrum disorder

Purpose: Providing therapy to children with autism spectrum disorder (ASD) often requires therapists to work closely with both the child with ASD and their family. Although there is evidence outlining best practice for therapists when working with families of children with disabilities, few studies have examined the parental perspective. This study investigated the qualities parents seek in therapists who work with their children with ASD.

Method: Semi-structured interviews were conducted with 14 parents of children with ASD. Thematic analysis was undertaken to analyse the data, with emergence of two core themes; Partnership and Effective Therapy.

Result: The parents of children with ASD interviewed for this study valued both working in partnership with therapists and therapists delivering effective therapy. Parents ultimately wanted therapists to produce positive outcomes for their children and were willing to sacrifice other desired qualities, as long as the therapy program was effective.

Conclusion: While parents of children with ASD identified a range of qualities that they want in therapists, a therapist being able to produce positive outcomes for their child was considered most important. The implications of these findings are discussed both in terms of clinical implications for therapists and directions for future research.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.