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1.
Background The aim of this study was to explore parents’ experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. Materials and methods A qualitative study design was employed. The study was conducted in two phases. (i) Secondary analysis of ecocultural interviews with 12 parent‐carers of more than one child, including an adolescent (10–21 years) with intellectual disabilities. (ii) In‐depth, semi‐structured interviews with a sub‐sample (n = 4) of parent‐carers. Data was analysed using Strauss & Corbin’s (1998) constant comparative method. Results Parents balanced their children’s needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children’s needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritized the needs of the adolescent with disabilities or siblings. Conclusions Findings add to knowledge on what families of adolescents with disabilities do day to day and specifically reveal how these parents meet the needs of their children. Practitioners, together with disability and mainstream services and systems, need to recognize parents’ goals, beliefs and values and the needs of the adolescent with disabilities. This will effectively aid the adolescent with disabilities, their siblings, parents and the whole of family life.  相似文献   

2.
Background Previous research has identified various dimensions of social support that are positively associated with parental well‐being. However, most research does not include multiple measures of social support and uses heterogeneous samples in terms of child characteristics such as age and severity of intellectual disability. Methods Thirty‐three parents of adolescent children with moderate–profound intellectual disabilities completed measures of parental well‐being (stress, anxiety and depression, and caregiving satisfaction), social support (informal and formal sources, and practical and emotional support), and child characteristics (adaptive and problem behaviours). Results Correlation analyses showed that parental well‐being was associated with the child's adaptive and problem behaviours and with the child's autism diagnosis. Parents’ ratings of the helpfulness of informal sources of support (spouse, extended family, friends, etc.) was most reliably associated with parental well‐being, and remained so after controlling for child characteristics. Parents’ access of service and professional support was not associated with parental well‐being, but there was some evidence that it was related to their child's needs. Conclusions The research emphasizes the significance of including multiple measures of social support in research with families of children with an intellectual disability. Furthermore, the possibility that parents, during their child's adolescence, may be especially vulnerable to the disruption of their informal support networks is an important practical consideration.  相似文献   

3.
Background Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method Semi‐structured in‐depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual disabilities and additional mental health problems. Results Parents described far reaching negative consequences of the young person’s mental health problems. In many parents these re‐evoked intense past feelings of grief and triggered feelings of helplessness and despair. Conclusions Parents’ experiences appear to be characterized by confusion, loss and hardship. Services do not seem to be attuned to the high level of emotional and practical needs of these parents.  相似文献   

4.
This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.  相似文献   

5.
Background Despite the distinctive physical, cognitive, personality and behavioural characteristics associated with Williams syndrome, few studies to date have examined parental experiences of raising a child with this genetic syndrome. Methods This explorative pilot study employed predominantly qualitative methodologies via face‐to‐face semi‐structured interviews with parents. Results Participants’ responses indicated a variety of daily challenges faced by parents of a person with Williams syndrome. Parents also noted challenges unique to this aetiological group that were derived from the oversensitive and highly empathetic nature of the person with Williams syndrome. Parental perceptions relating to the positive impact that a person with Williams syndrome can have on the family were also reported. Discussion While some of the findings regarding the daily challenges faced by families with a person with WS appear to be similar to the experiences of families who have children with other genetic syndromes and developmental disabilities, the findings indicate that certain daily challenges may also be unique to parents of this aetiological group. In addition, the present study makes a valuable contribution to the research literature focusing on the positive aspects of raising a child with a disability. Future theoretical and practical applications of the present study are also suggested.  相似文献   

6.
Background In recent years, community based therapy service providers have explored different service delivery models to optimize child and family outcomes. This qualitative study aimed to explore parents’ experiences of one particular service team that adopted a strengths approach, utilizing natural learning environments. Materials and methods Nine parents undertook in‐depth, semi‐structured interviews that were taped, transcribed, and examined using thematic content analysis. Rigour was ensured through peer and member checking, field journals and an audit trail. Results Several key themes emerged including; families’ initial experiences of the service, their views of their child with a disability, their hopes for the future, and their experiences of receiving intervention from the team. Conclusions Parents were generally positive about the adoption of a strengths approach. ‘Working together’, ‘being positive’ and ‘information exchange’ were the main themes that parents’ attributed to their positive experiences with the service.  相似文献   

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8.
Parents’ expectations are known to be a central component in children’s development through multiple pathways; however, limited information exists regarding expectations of parents of children with developmental disabilities. The purpose of the current study was to examine future expectations of parents of children with cerebral palsy (CP), as well as the differences in expectations between mothers and fathers. Forty-nine mothers and fathers of children with CP (6–12 years) participated in this study. Parents completed a Parental Future Expectations Questionnaire for Children with Disabilities, and a Perception of Child’s Ability questionnaire, as well as the Pediatric Evaluation Disability Inventory (PEDI). The Gross Motor Function Measure-66 (GMFM-66) was completed by physical therapists. Parental differences in future expectations were analyzed and multiple-stepwise regressions established parental expectations’ predictors. Parents’ expectations correlated with their child’s characteristics. Parents of children with lower levels of functioning reported lower expectations. No differences were found between mothers’ and fathers’ future expectations; however, differences were found between expectations’ predictors. Predictors of mothers’ expectations were their perceptions of their child’s abilities as well as child’s performance. Fathers’ predictors were child’s level of functional impairment and their perceptions of their child’s abilities. The results indicate that parental expectations relate to their child’s functional ability and differ between parents in relation to the child’s level of impairment (fathers) or child’s actual performance (mothers). These differences should be acknowledged by clinicians when they provide specific support for children with chronic physical disabilities and their families.  相似文献   

9.
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.  相似文献   

10.
Background It is important to determine how programmes serving the individual with intellectual disability may also help to reduce stress in parents of adult children with intellectual disabilities. The aim of this study was to test whether parents who frequently watch their children at Special Olympics (SO) competitions report less stress than those who watch with less frequency. Methods A total of 57 mothers and 39 fathers completed the Parenting Stress Index in reference to their children with intellectual disability, whose ages ranged from 17 to 42.3 years. Frequency of parental attendance at competition and volunteering for SO was also assessed. Results Parents who frequently attended their children's competitions reported less stress than those who attended with less frequency. Mothers who volunteer, reported more child‐related stress than those who did not. A number of other gender‐specific relations were found. Conclusions These results support the hypothesis that parents who frequently see their children compete in SO have a more positive parent–child experience than those who do not attend with the same frequency. Experimental research, with controlled pre–post designs, is needed to directly assess any causal effect.  相似文献   

11.
Aims and objectives. This study sought to discover bereaved parents’ perspectives and experiences of a nurse‐led, ward‐based, telephone support programme in a children’s oncology unit. Background. Parental grief is especially intense and long‐lasting, and many parents can experience serious psychological problems. The oncology team learned that some parents felt ‘forgotten’ or ‘abandoned’ following their child’s death and addressed this concern by initiating and subsequently evaluating a telephone bereavement support programme. Design. An interpretive phenomenological investigation of the experiences of six parents who participated in the programme. Methods. Parents shared their experiences and perceptions of the programme in individual interviews. Interpretive phenomenology and thematic analysis guided the interviews’ interpretation to ascertain both the parents’ experiences of the programme and their understandings of everyday clinical terms such as ‘support’ or ‘reassurance’. Results. Parents found the programme supportive, especially valuing ongoing contact with a nurse who ‘knew them’. Telephone contact was preferred to visiting the hospital, which brought back painful memories. Calls were important elements in helping parents create meaning and memory around their deceased child. Conclusions. Regular telephone contact over an agreed period from a familiar member of the child’s treating team can create a more positive and supportive bereavement experience for parents in the year following their child’s death. The specific findings are discussed in the context of the death of a child as a crisis of meaning. Relevance to clinical practice. Clinical nurses are ideally placed to use existing close relationships to extend care and support to bereaved parents. This study shows how nurses can identify service gaps, work with interdisciplinary team colleagues to initiate appropriate actions and participate in the essential evaluation subsequently required.  相似文献   

12.
In Finland, support for families with children is given, as far as possible, as part of basic services. However, to support basic services, services of this kind have also been generated as the result of several projects. The public sector itself has been reorganized and reformed to more resemble a project. In this article, the experiences of parents with children receiving project‐based support are studied qualitatively. Preventive support was offered via child health and maternity clinics in the form of home visiting. The reform of the municipal and service structure has made the development of preventive services an issue of even greater current relevance. The purpose of the study was to collect and explore the experiences of parents as reported in their own voices. The research question is, how did families experience this novel support model in practice? The data consist of interviews with six client families, including mothers and fathers, nine parents in all. A qualitative and narrative approach to the interview data was used. Analysis of the interviews yielded the following themes: being critical about the support given, building trust between parents and the professionals and empowering parents through support. According to the results, parents experienced receiving early support, and especially home visiting, as useful. The purpose of home visiting was not always clear to begin with, and consequently, some parents had reservations about them. Experiences of maternity and child health clinics varied. In addition to the health professionals' skills, their personality, familiarity and supportive and trustful way of working was felt to be most important. Parents felt that their parenting skills and relationships met with approval during the family work. Further research is needed on this kind of early support, especially support delivered at home, to develop these services.  相似文献   

13.
The purpose of the study was to know the meaning of parents' experiences of being supported by professionals when having a child with disability. Data were obtained through unstructured interviews with 16 parents within 10 families and analyzed by a phenomenological-hermeneutic approach. Parents narrated experiences of being supported and not being supported, and the findings are presented as contrasting meanings. Being supported by professionals means gaining confidence as a parent and having the child seen as valuable. This is interpreted as being invigorated in parenthood, where sharing the mutual task and goal, which is the child's best, with professionals is a crucial aspect. The meaning of experiences of lack of support illuminates the consequences for the entire family's well-being and the struggle parents experience to gain confidence as parents and recognition of the child as valuable.  相似文献   

14.
Aims and objectives. To explore the perceptions of families in Taiwan of living with a child who have learning disability and the parents perspectives on the cultural influences on their spiritual experiences. Background. Traditionally, the family is the most important unit of society, family functioning is a key field of interest among helping professionals who provide family interventions. Design. This study adopted qualitative research with semi‐structured interviews. The study analysis used content analysis which was a process of identifying, coding and categorizing the themes in the data. Methods. Semi‐structured interviews were conducted with 117 parents in their homes and were interpreted by using content analysis to extract key conceptual themes from the transcribed interview texts. Results. The findings revealed that the perceptions of families with learning disability children were wide‐ranging. The stressors did not occur in a fixed order, they were different in degree and importance from one family to another. Conclusions. The results showed that the experience of analysing qualitative data was extremely valuable for parents in that it aided their own understanding of the real‐life experiences of the parents and in coming to know the parents in a richer, more meaningful way. In doing so, nurses need to be aware of their own thoughts and environment without letting it influence others. Relevance to clinical practice. The nurse should demonstrate knowledge and understanding of the family's culture and be able to show respect for cultural difference to assess and identify culturally acceptable health‐care interventions.  相似文献   

15.
The aim of this study is to produce concepts to describe criteria for good quality of support groups for families with children. The research questions were, what is a good support group like according to parents’ experiences and what are the criteria for the good quality from the perspective of families? The study sample consisted of 13 small groups. The study participants consisted of 63 mothers and 14 fathers, who accounted for 63% of the small group attendance. Data were collected in Finland through 13 group interviews. Qualitative content analysis of manifest and latent content was used as the method of analysis. Parents appreciated the availability of information, the ability of the parents to discuss matters, the activities, interaction and good group supervision. As the parental views of the characteristics of a good support group are concrete, they can be easily taken into account with implementing family‐oriented support group programmes. The concepts of the present study can be used in the future to construct instruments to evaluate quality of support groups from the perspective of families. Further studies should pay more attention to the experiences of drop out families and families that are not satisfied with group services.  相似文献   

16.
Background Although grandparents are recognized as an important source of support for families of children with intellectual and other disabilities, there has been very little research in this area. The aim of the present paper is to present a brief overview of the literature, and to present data from a preliminary study of relationships between parental stress and grandparent support and conflict. Methods Sixty‐one parents of children with Down's syndrome (34 mothers and 27 fathers) completed questionnaires on grandparent support and conflict. Parents also completed the Friedrich Short Form of the Questionnaire on Resources and Stress (QRS) with scoring amended to include a depression sub‐scale. Results The main findings were: (1) grandparent support and conflict were associated with mothers' but not fathers' ratings of stress on the QRS, and (2) both grandparent support and conflict made independent contributions to the prediction of mothers' stress on at least one dimension of the QRS. Conclusions Practical implications of the results for interventions designed to encourage grandparent support for families are discussed. Issues for further research and methodological problems with the study are also identified.  相似文献   

17.
Pediatric cancer patients and their families face significant physical, emotional, and psychosocial challenges. Few studies have investigated how children manage these challenges and how parents may help in the process. This qualitative study aimed to explore common cancer-related stressors for children and to examine child coping and parental assistance in coping with these stressors during treatment. Fifteen children undergoing cancer treatment and their parents participated in semistructured interviews. Four themes emerged capturing cancer-related stressors: cancer treatment/side effects, distressing emotions, disruption in daily routines, and social challenges. Six themes emerged regarding child coping strategies that were classified within an approach/avoidance coping framework. Approach coping strategies included the following: cognitive restructuring, relaxation, practical strategies, seeking social support, and emotional expression. Distraction was the only avoidant coping strategy. Parents tended to encourage approach coping strategies (eg, cognitive restructuring, social support). Within families, few coping strategies were reported (child: M = 1.47, SD = 0.99; parent: M = 3.33, SD = 1.18), suggesting that early family-based interventions teaching coping techniques for cancer-related stressors may be beneficial.  相似文献   

18.
PROBLEM: Schizophrenia, which frequently strikes during adolescence or young adulthood, can have devastating effects on the family. Parents, who are primary caregivers for mentally ill adolescents, often lack the information and skills necessary to cope with the multiple and complex consequences of a major psychiatric disorder. Moreover, parents are ill‐ prepared to help their other children cope with the unpredictable changes that accompany having a mentally ill sibling. Asian American parents face similar issues in dealing with their schizophrenic adolescents. However, there is limited information available about this population. METHODS: The purpose of this qualitative study was to examine the experiences of four Asian American parents who participated in a community‐based, family‐centered, self‐management intervention program for youth with schizophrenia. Participants were interviewed using semistructured interviews and language interpreters. Data were analyzed utilizing content analysis. FINDINGS: Four themes were identified: (a) same, but different; (b) sharing and learning; (c) using skills learned; and (d) working with interpreters. CONCLUSIONS: Results indicate that Asian American parents valued their participation in the group intervention and emphasized their similarities with non‐Asian American families who have a mentally ill youth.  相似文献   

19.
Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries.  相似文献   

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