Parents of Children with Disabilities:... (PDF Download Available)

May 16, 2017 | Author: Anonymous | Category: Documents
Share Embed


Short Description

Jan 4, 2018 - Full-Text Paper (PDF): Parents of Children with Disabilities: Resilience, Coping, and Future Expectations....

Description

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

April 17, 2002

8:32

C 2002) Journal of Developmental and Physical Disabilities, Vol. 14, No. 2, June 2002 (°

Parents of Children With Disabilities: Resilience, Coping, and Future Expectations1 Tali Heiman2,3

On the basis of characteristics of family resilience, the study examined the perspectives of parents of children with an intellectual, physical, or learning disability. Thirty-two parents were interviewed as to past, present, and the modes of coping. The questions examined various aspects of family ecology domains: parents’ responses to the child’s diagnosis; patterns of adjustment; family support and services used by parents; and parents’ feelings and future expectations. Although, it was found that most parents had to make changes in their social life and expressed high levels of frustration and dissatisfaction, many try to maintain their routine life. The majority expressed the need for a strong belief in the child and in the child’s future, an optimistic outlook, and a realistic view and acceptance of the disability. The study highlighted the importance of social resources and support, and the need for effective programs of intervention. KEY WORDS: parents; disability; coping; expectations; resilience.

Definitions of the concept of resilience usually include the ability to withstand and rebound from crisis and distress. A systemic view of resilience within ecological and developmental contexts seeks to identify elements that enable families to cope more effectively and emerge hardier from crises or persistent stresses (Hawley and DeHaan, 1996; Walsh, 1996). A similar 1 This paper is based on a presentation at the 11th World Congress of the International Associa-

tion for the Scientific Study of Intellectual Disabilities (IASSID), Seattle, Washington, August 2000. 2 Department of Education and Psychology, The Open University of Israel, Ramat Aviv, Tel Aviv, Israel. 3 To whom correspondence should be addressed at Department of Education and Psychology, The Open University of Israel, 16 Klausner Street, Ramat Aviv, 61392 Tel Aviv, Israel; e-mail: [email protected] 159 C 2002 Plenum Publishing Corporation 1056-263X/02/0600-0159/0 °

Style file version Nov. 19th, 1999

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

160

T1: GYK

PP443-370912

April 17, 2002

8:32

Style file version Nov. 19th, 1999

Heiman

concept of hardiness grew out of another line of research on stress and coping. Although there are no exact terms or variables that define resilience, several different researches have examined diverse terms associated with it, such as a sense of mastery, optimism, and reliance on God (Littrell and Beck, 1999), resilience as successful adjustment in terms of self-esteem, social support, various aspects of social life, problem-solving, and coping strategies (Dumont and Provost, 1999), notions of social integration, interdependence, and close relationships (Lyons et al., 1998). Another study on resilience revealed three constitutional factors that include measures of self-efficacy, well-defined faith lives, and the ability to reframe barriers and obstacles (Bachay and Cingel, 1999). A child’s disability is a triadic experience, involving three-way interactions among the child who experiences the dysfunction, the family that is affected by it, and the external environment where the disability is manifested (Falik, 1995). The crisis engendered by the first intimation or diagnosis that something is wrong with their child is probably the parents’ most difficult and shocking experience. In most cases, parents’ initial reactions are likely to be negative, and similar to those related to bereavement (Blacher, 1984; Marvin and Pianta, 1996). Families either adapt flexibly and mobilize into effective action or freeze in various degrees of rigid, ineffective reactions, whereas others tend to resist or even deny the diagnosis itself (Falik, 1995). The findings of Bower and Hayes’ study suggest that families without a child with a disability, families with a child with an intellectual disability, and families with a child with a physical disability are characterized more by similarities than by differences (Bower and Hayes, 1998). Changes of life routines are necessary in order to provide for the child’s care, which have been found to have significant effects on family functioning (Marvin and Pianta, 1996; Turnbull and Turnbull, 1990; Waggoner and Wilgosh, 1990). The difficulties encountered by parents coping with a child with a disability and their familial relationships have been cited as a source of anxiety, overprotection, rigidity (Lardieri et al., 2000), as well as an explanation for lower levels of coherence, less emphasis on the personal growth of other family members, and a greater emphasis on control within the family (Margalit and Heiman, 1986). Parents of children with disabilities experience greater stress and a larger number of caregiving challenges, such as more health problems, greater feelings of restriction, and higher levels of parental depression than parents of nondisabled children (Quine and Paul, 1985; Roach et al., 1999; Valentine et al., 1998). Some families experience difficulties in financial assistance or claimed on inadequate and insufficient support, others had the impression of a lack of coordination between different social departments, agencies, and authorized workers (Freedman and Boyer, 2000). Mothers of children with mental handicaps reported a higher

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

Parents: Coping, Expectations, Resilience

April 17, 2002

8:32

Style file version Nov. 19th, 1999

161

social burden than did those of children with physical handicaps (Tangri and Verma, 1992), especially when the children with disabilities grow up (Rimmerman and Duvdevani, 1996). Parents expressed their personal concern about their child’s ability to function in a less restrictive environment or in less sheltered settings, and were concerned about the child’s future (Waggoner and Wilgosh, 1990). Families with children with special needs face both the normal pressures and tensions of family life and, in addition, adjustment to the presence of the child with a disability. Such families usually require assistance in order to reorganize their lives toward positive adaptation (Werth and Oseroff, 1987). How does the resilience of parents emerge in a family with a child with a disability? The present research examined this question by interviewing parents in such families, specifically about their reactions to the birth of their child, their present concerns and support resources, and their future expectations.

METHOD Participants Thirty-two parents of children with special needs participated in the study. Participants were parents of children who lived at home, with their families, in a large metropolitan district in central Israel. The families were selected from three special education schools, each of which was oriented toward dealing with one special type of disability: intellectual, physical, or learning. Demographic data for the parents were obtained from school counselors. The families were matched by age, education, and socioeconomic levels: parents’ ages ranged from 31 to 57 (M = 41.74, SD = 7.64); parents’ education ranged from graduated from high school (n = 3, 18.8%) to graduated from college (n = 13, 40.6%), with the remainder not reporting (n = 16, 50%); socioeconomic levels ranged from middle to upper-middle class. The criteria for selection of families were (a) only one child with a specific disability, (b) other siblings living at home are between 0 and 18 years of age and with no known disabilities or disorders, and (c) the parents speak and understand the country’s language (Hebrew). The families were then divided into three groups: 16 families (50%) with children with intellectual disabilities, including moderate to severe mental retardation, autism, Down’s syndrome; nine families (28%) with children with physical disabilities or handicaps such as cerebral palsy; and seven families (22%) with children

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

162

April 17, 2002

8:32

Style file version Nov. 19th, 1999

Heiman

with learning disabilities. All of the children, 23 boys (71.9%) and 9 girls (28.1%), ranging in age from 7 to 16 years (M = 10.92, SD = 6.25) were studying in special education schools.

Instrument The interview was designed by the researcher to tap into the parents’ experience with a child with a disability living at home. The questions were set to identify the facilitators and barriers to implementing the family’s routine life and to identify the composition of the parents’ resilience. Once the initial survey was developed, it was field tested by a panel of experts in the area of inclusion, among whom were a special education teacher, a university lecturer, a social worker, and a psychologist. The survey instrument was refined using feedback from them before being distributed. The Parents’ Perception Interview consisted of three topics related to the past, the present, and the future. The past questions (1, 2, and 3) asked the parents about their suspicion of their child’s disability; parents’ reactions to the diagnosis of a disability and their reactions of other family members to the diagnosis. The next four presents questions (4, 5, 6, and 7) that were included to provide a specific indicator of benefits and problems rearing the child; the effect the child has on the parent’s life; services mostly used by parents; and current feelings involved in raising a child with a disability. The last topic (Questions 8 and 9) used in this study were about the future concerns and expectations and parent’s activity for the welfare of their child in the future.

Procedure Parents were contacted by telephone to set up an interview in their home. Prior to the participants responding, they were briefed on the purpose of the study. The interviews, each of which took 30–40 min, were audiotaped. Qualitative data analysis procedures were used to examine the participants’ perceptions, and the constant comparative method of analysis was applied as a method of coding and categorizing the data (Lincoln and Guba, 1985). In order to classify the categories of each item, the answers were examined separately by three evaluators: all graduates with a second degree in special education and psychology and familiar with the study. For each question the evaluators listed the categories they identified. The categories were then compared and reviewed to identify consistencies and to reconcile discrepancies. The categories were re-analyzed on the basis of this revision.

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

Parents: Coping, Expectations, Resilience

April 17, 2002

8:32

Style file version Nov. 19th, 1999

163

Exact agreement on all the units belonging in each category was found to be between 85 and 98%. The reliability score for the categories for the entire sample was 96%. RESULTS Qualitative and quantitative data analyses were conducted. The data results are reported according to each of the nine questions posed in the interviews. The past 1. Parent’s suspicion. Half of the parents (16 parents, 50%) suspected their child had a disability due to a birth condition such as birth ataxia, premature birth, abnormal blood test, Down’s syndrome, or sensory system developmental delay. Ten parents (31.3%) noticed a delay in the child’s motor development (“She wasn’t holding her head up yet,” “He wasn’t yet walking”), or observed unexpected motor movements. Five parents (15.6%) observed a development regression, a communication disorder or a delay in communicating. Most of the parents (n = 22, 68.8%) observed that something was wrong with their child from 1 month after birth to 4 years; a smaller number (n = 5, 15.6%) noticed this between the child’s birth to 1 month, whereas a few (n = 4, 12.5%) observed regression only after the age of 4. For example, the mother of a 5-year-old boy with mild mental retardation told us “Gil is our fist child. I didn’t suspect anything. His birth weight was excellent. During his first three months he didn’t succeed in raising his head. Then, we observed other motor problems. Unfortunately, no one told us that he was injured at birth until he was three years old, and no one discussed Gil’s diagnosis with us.” There were no significant correlations or significant results of Chi-square analyses between the time and the cause of the parents’ suspicion (r = .02, ns, χ 2 = 4.79, df = 4, p = .310, ns). 2. Parents’ responses. Four main categories regarding parents’responses to child’s diagnosis were provided. The most frequent category found was a negative emotional response (n = 27, 84.4%), which included feelings of depression, anger, shock, denial, fear, self-blame, guilt, sorrow, grief, confusion, despair, hostility, emotional breakdown. Daniela, a 36-year-old mother of a 4-year-old girl with Down’s syndrome explained “I felt as if the whole world had fallen on me. I didn’t understand how this could be happening to me, and I thought,

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

164

T1: GYK

PP443-370912

April 17, 2002

8:32

Style file version Nov. 19th, 1999

Heiman

how will I return home?” The second most common category (n = 10, 31.3%) was a negative physiological response. Parents described reactions such as crying, not eating, cold sweat, trembling, fear, physical pain (headache, stomach ache), and breakdown. The mother of a 15-year-old boy with autism said “I cried a lot, a lot of terrible thoughts came into my mind. I was covered with cold sweat, and my heart beat very fast. I was afraid I’d have a heart attack.” A third category (n = 4, 12.5%) was coded as a positive emotional reaction. In the words of the parents of a child with cerebral palsy, “We were prepared for a diagnosis like this. We weren’t surprised. We expected it. We just wanted to hear from the doctors what we could do, what treatment we should provide him with.” A few parents (n = 3, 9.4%) had a nonspecific response or did not remember what they had felt or done. 3. The reactions of other family members to the diagnosis. Most of the parents (n = 24, 75%) talked to members of their family, including grandparents, sisters, brother-in-law, or their other children. Some parents (n = 6, 18.75%) told only their spouse and a few (n = 2, 6.25%) talked only to a friend. According to the parents’ answers about the reactions of others, three categories were found. Most of the people (n = 17, 53.12%) reacted in a positive way, encouraging the parents, (e.g., “Don’t worry,” “It’ll be all right”), and expressing a lot of understanding, support, and love. Another group (n = 9, 28.12%) had a negative reaction. They were shocked, or expressed deep sorrow or grief. One neighbor said, “Me? I’d kill myself.” A few of the responses were practical and offered help to the parents (n = 6, 18.75%). Using Chi-square analysis, no significant correlations or differences were found between the three groups with whom the parents talked (family, spouse, friend) and the three types of disability (intellectual, physical, learning) (r = −.09, ns, χ 2 = 8.69, df = 4, p = .069, ns). Furthermore, no significant correlation were obtained between the three types of interlocutors and the three types of responses (r = .38, ns), nor were any significant differences found between the three types of responses and the three types of disability (χ 2 = 7.68, df = 4, p = .104, ns). No unique profile was found for the persons with whom parents consulted and a type of response, or regarding the specific disability. This suggests that parents shared their feelings or thoughts about their child’s disability with the people to whom they felt most close, had the greatest confidence in, or from whom they expected understanding, rather than according to the severity of the child’s disability.

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

Parents: Coping, Expectations, Resilience

T1: GYK

PP443-370912

April 17, 2002

8:32

Style file version Nov. 19th, 1999

165

The present 4. Concerns or problems in rearing your child. After coding, the parents’ answerswere classified into four main categories: (a)parent-oriented; (b) parents–disabled child oriented; (c) parents–nondisabled child oriented; and (d) parents with no special problems or concerns. Most of the parents expressed concerns in more than one of these categories. (a) Parent-oriented. Most of the parents spoke about the various difficulties they themselves have to cope with. Most parents (n = 26, 81.25%) mentioned never-ending emotional and/or physical fatigue, social isolation, and the feeling of a lack of freedom, “I can never leave him alone” or “I have to take her with me everywhere.” More than three-quarters (n = 25, 78.12%) mentioned their financial problems. The special expenses entailed usually constitute a heavy burden for the entire family. These include private teachers, specific learning courses, various consultations, private doctors, and different therapies. Another issue that bothers many parents (n = 15, 46.8%) is their feeling that they lack accurate information regarding educational settings, and social and psychological help: “We have to seek out the exact place or organization that can advise us,” or “We have to fight for things like reductions in payments, special dentists, therapy, special instruments, computer, and vocal tapes that our child is supposed to receive.” (b) Parents–disabled child oriented. Parents expressed medical concerns and extra stress when the child with a disability is ill or has to pass a medical examination (n = 28, 87.5%). The parents were concerned about the social adjustment of their child, and felt that he or she is socially isolated or rejected (“He has no friends”), and that there were not enough after-school recreational opportunities or services for children with developmental disabilities (n = 13, 40.62%). (c) Parents–nondisabled child oriented. Almost half of the parents (n = 14, 43.75%) were worried about the impact of the disability on the special-needs child’s siblings and the heavy burden that may fall on them when they have to take care of or take responsibility for their brother or sister with a disability. Parents were also worried about the social lives of these siblings, of the amount of their interactions with peers, and their social and behavior adjustment (n = 12, 37.5%). (d) Parents who claimed they have no special problems (n = 8, 25%).

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

April 17, 2002

166

8:32

Style file version Nov. 19th, 1999

Heiman

Fig. 1. The disability effect on the family life.

5. The child’s influence on the parents’ life. The majority of the parents (62%) believe that they are the ones most affected by their child’s disability, whereas others (44%), thought that the family’s other children were the most affected. Although many felt that it affected the nuclear family (40%), and the extended family (20%), some parents reported their lives were not affected by the disability (26.9%). Figure 1 shows the effect of the disability on family life: most of the parents (61.5%) reported that the disability of their child strengthened parental relations (“Communication between us is better now than before”). Some of the parents (23.1%) claimed that the child’s disability created new problems, conflicts, and impatience between the parents, and the dyadic relationship was weakened. The presence of a disabled child affects the parents’ social life and their relationships with friends (26.9%). For example, the parents or other family members rarely spend time with friends, friends ask the parents not to bring their child to social events, parents did not participate together in out-of-the-home activities or social events, and siblings tend to avoid bringing friends home. Some parents claimed they have completely lost contact with friends, relatives, or even with their extended family (30.8%). 6. Services used by parents. During the interviews the parents were asked about the main services they referred to for assistance. Most of the parents (93.5%) noted they used psychological services either for the relevant child, themselves, or siblings. These services are referred to for psychological testing or for guidance and emotional

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

Parents: Coping, Expectations, Resilience

April 17, 2002

8:32

Style file version Nov. 19th, 1999

167

support. Other services are also referred to educational (80.6%); medical, including doctors (71%); paramedical services, including physiotherapy, speech, music, or art therapy (51.6%); municipal services, especially for refunds and reductions for various expenditures (12.9%). Few parents (6.5%) needed help and support from organizations that provide assistance for handicaps, most were interested in acquiring special equipment, instruments or computers, or in summer camps suitable for their child. 7. Parents feelings. Most of the parents (75%) conclude that their initial negative reactions and feelings have turned into positive and optimistic feelings of love, joy, and acceptance, as well as the satisfaction and strength that accompany success in rearing their special child. However, 28% of the parents admitted that they still feel anger, sorrow, frustration, guilt, and pain especially when comparing their special child with others. The future 8. Parents’ concerns and expectations. Parents’ concerns and expectations were mixed. As Fig. 2 shows, many parents (55%) were concerned about their child’s inclusion in society, including her or his financial and physical independence; others (50%) were concerned about the child’s education, finishing school, ability to acquire a profession, and have economic independence; some parents (30%) pondered the question of how, in the future, their then grown-up child would manage without them, where he or she would live, and what kind of financial and emotional support he or she would receive. Parents of younger children with a disability (15%) were concerned with how they would deal with their children’s adolescence and puberty, whereas those with such children already at adolescence (15%) were concerned with their children’s future difficulties in building

Fig. 2. Parents’ future concerns.

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

168

April 17, 2002

8:32

Style file version Nov. 19th, 1999

Heiman

a family, and the possibility that their child would be unable to do so. 9. Parent’s activity for their child’s future welfare. Finally, the parents were asked what they were doing at present to ensure their child’s welfare in the future. Although their responses to the previous questions indicated concern about their children’s future welfare and security, most of the parents (70%) were not, at present, taking any practical steps to do so. The others 30% looked for hostels’ information, examined vocational facilities, or wrote to different organizations for advice.

DISCUSSION The study focused on the parents of children with an intellectual, physical, or learning disability who are living at home. It examined parent’ responses to the diagnosis, their patterns of adjustment, and their future concerns and expectations. In this way it sought to examine the qualities of resilience that enable parents to function and to maintain their morale and optimism during crises and to be able to cope in a productive way with regard to both the present and the future of their child. Most of the parents in this study tended to react in an emotionally and physiologically negative way to the diagnosis of their child’s disability. These results contribute to theories (e.g., Blacher, 1984; Marvin and Pianta, 1996; Seligman and Darling, 1989) about parents’ reactions when faced with a child with a disability. We found that the transition in a family with a special-needs child brought about significant changes in that family’s social life. Many parents had to make changes in their social life of frustration and dissatisfaction. Some experienced considerable stress, as well as feelings of depression, anger, shocks denial, self-blame, guilt, or confusion. It would, nevertheless, be incorrect to view such families as pathological because of their disabled child; it is of greater benefit to examine the strong and positive relationships that develop between the parents and that challenge and strengthen them. A larger sample would undoubtedly provide a clearer picture of the parents’ experiences and feelings, and significant differences between the families might then emerge. The findings of this study provide a greater understanding of the effect of various types of support that answer the needs of families caring for individuals with developmental disabilities. Parents try to maintain their routine life, sometimes drawing on or even initiating support from nuclear

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

Parents: Coping, Expectations, Resilience

T1: GYK

PP443-370912

April 17, 2002

8:32

Style file version Nov. 19th, 1999

169

family members, grandparents, and other relatives. Almost all of the parents (93.5%) used a combination of different types of supports and benefits from psychological services and psychiatric consultation, support groups, social workers, educational advisors, or support provided by voluntary organizations or special education system. Seeking for support, can enlightened on how informed resilience is expressed, that is, by doing something actual or practical about the situation. Singly and together, these may help to construct their resiliency. Parents expressed the need for a strong belief in the child and in the child’s future, in maintaining an optimistic outlook along with a realistic view and acceptance of the situation. They evinced their resilience from the holistic perspective “the importance of looking holistically at the child as part of the family, not as a separate entity,” was noted by some parents. Furthermore, parents emphasized the idea of accepting the child, who “has the right to live like our other children,” analyzing the situation in an objective way, and trying to obtain practical and efficient solutions. We can assume, in terms of Blacher’s theory (Blacher, 1984), that parents who participated in the current study were all at that stage when they have already accepted the full meaning and implications of the child’s disability and had adapted themselves to it. Having achieved this realistic approach to such disability, they were able to function well, or at least adequately, within the family system. On the basis of characteristics of family resilience, viewed as “the ability to bounce back or to return to a previous way of functioning” (Hawley and DeHaan, 1996, p. 284), three main factors that enable parents to function “in a resilient way” were identified in this study: (a) an open discussion and consultation with family, friends, and professionals; (b) a positive bond between the parents, that supports, and strengthens them; and (c) a continuous and intensive educational, therapeutic, and psychological support for family members. Another characteristic that was found to clarify the sense of resilience in these families was comprised of positive parental feelings toward their child, toward coping, and toward family relationships. The majority of the parents expressed such feelings as joy, love, acceptance, satisfaction, optimism, and strength, although 28% expressed such negative feelings as anger, frustration, or guilt about rearing a child with a disability. The study presented here enhances our knowledge and understanding of how—despite the difficulties in rearing a child with a disability, with the financial, emotional, and social problems it entails, and the concerns about family conflicts and sibling adjustment—families respond with strength and fortitude (i.e., with resilience). The findings of this study demonstrate that it would be advantageous to enhance coping strategies that may contribute to parents’ competencies, particularly in relation to the future welfare of their

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

T1: GYK

PP443-370912

April 17, 2002

170

8:32

Style file version Nov. 19th, 1999

Heiman

children. Furthermore, it highlights the importance of social resources and the need for effective programs of intervention. In future studies, relationships between parents, siblings, and the special child with a disability, would be better understood within a longitudinal design, in which the emotional, social, and behavioral adjustment of each member of the family is examined. APPENDIX: THE PARENT’S PERCEPTION INTERVIEW The past 1. Parent’s suspicion of their child’s disability: “When and why did you first suspect that something was wrong with your child?” 2. Parents’ reactions to the diagnosis of a disability: “How did you respond or react when you heard the diagnosis?” 3. Reactions of other family members to the diagnosis: “With whom did you talk after receiving the diagnosis? How did they react?” The present 4. Concerns or problems rearing the child: “What are your daily concerns in rearing your child?” 5. The effect the child has on the parent’s life: “How does your child’s disability affect your family life?” 6. Services used by parents: “What services do you mostly use, and for what?” 7. Present feelings: “Can you describe your feelings about your daily involvement in raising a child with a disability?” The future 8. Future concerns and expectations: “Please describe your main expectations or the difficulties that you anticipate regarding your child’s future?” 9. Parent’s activity for the welfare of their child in the future: “What are you doing to ensure your child’s welfare in the future?” ACKNOWLEDGMENT I thank Ruth Ruzga for her editorial contribution. REFERENCES Bachay, J. B., and Cingel, P. A. (1999). Restructuring resilience: Emerging voices. Affilia 14: 162–175. Blacher, J. (1984). Sequential stages of parent adjustment to the birth of a child with handicaps: Facts or artifact? Ment. Retard. 22: 55–68.

P1: GOG/GLS/GOG

P2: GKW/GAQ

QC: GYK/GAQ

Journal of Developmental and Physical Disabilities [jodd]

Parents: Coping, Expectations, Resilience

T1: GYK

PP443-370912

April 17, 2002

8:32

Style file version Nov. 19th, 1999

171

Bower, A. M., and Hayes, A. (1998). Mothering in families with and without a child with disability. Int. J. Disabil. Dev. Educ. 45: 313–322. Dumont, M., and Provost, M. A. (1999). Resilience in adolescents: Protective role of social support, coping strategies, self-esteem, and social activities on experiences of stress and depression. J. Youth Adolesc. 28: 343–363. Falik, L. H. (1995). Family patterns of reaction to a child with a learning disability: A mediational perspective. J. Learn. Disabil. 28: 335–341. Freedman, R., and Boyer, N. C. (2000). The power to choose: Support for families caring for individuals with developmental disabilities. Health Soc. Work 25: 59–68. Hawley, D. R., and DeHaan, L. (1996). Toward a definition of family resilience: Integrating life span and family perspectives. Fam. Process 35: 283–298. Lardieri, L. A., Blacher, J., and Swanson, H. L. (2000). Sibling relationships and parent stress in families of children with and without learning disabilities. Learn. Disabil. Q. 23: 105–116. Lincoln, Y. S., and Guba, E. G. (1985). Naturalistic Inquiry, SAGE, Beverly Hills, CA. Littrell, J., and Beck, E. (1999). Perceiving oppression: Relationships with resilience, selfesteem, depressive symptoms, and reliance on God in African-American homeless men. J. Sociol. Soc. Welfare 26: 137–158. Lyons, R. F., Mickelson, K. D., Sullivan, M. J. L., and Coyne, J. C. (1998). Coping as a communal process. J. Soc. Pers. Relation. 15: 579–605. Margalit, M., and Heiman, T. (1986). Family climate and anxiety of families with learning disabled boys. J. Am. Acad. Child Psychiatry 25: 841–856. Marvin, R. S., and Pianta, R. C. (1996). Mothers’ reactions to their child’s diagnosis: Relations with security and attachment. J. Clin. Child Psychol. 25: 436–445. Quine, L., and Paul, J. (1985). Examining the causes of stress in families with severely mentally handicapped children. Br. J. Soc. Work 15: 501–517. Rimmerman, I., and Duvdevani, A. (1996). Parents of children and adolescents with severe mental retardation: Stress, family resources, normalization, and their application for outof-home placement. Res. Dev. Disabil. 17: 486–494. Roach, M. A., Ormond, G. I., and Barratt, M. S. (1999). Mothers and fathers of children with Down Syndrome: Parental stress and involvement in children. Am. J. Ment. Retard. 104: 422–436. Seligman, M., and Darling, R. B. (1989). Ordinary Families Special Children, Guilford Press, New York. Tangri, P., and Verma, P. (1992). A study of social burden felt by mothers of handicapped children. J. Pers. Clin. Stud. 8: 117–120. Turnbull, A. P., and Turnbull, H. R., III (1990). Families, Professionals, and Exceptionality: A Special Partnership, Rev. edn., Merrill, Columbus, OH. Valentine, D. P., McDermott, S., and Anderson, D. (1998). Mothers of adults with mental retardation: Is race a factor in perceptions of burdens and gratification? Fam. Soc. 79: 577–584. Waggoner, K., and Wilgosh, L. (1990). Concerns of families of children with learning disabilities. J. Learn. Disabil. 23: 97–113. Walsh, F. (1996). The concept of family resilience: Crisis and challenge. Fam. Process 35: 261– 281. Werth, L. H., and Oseroff, A. B. (1987). Continual counseling intervention: Lifetime support for the family with a handicapped member. Am. J. Fam. Ther. 15: 333–342.

View more...

Comments

Copyright © 2017 DOCIT Inc.