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Support systems for parents of children with Down Syndrome Kelsey-Etmanski, Helen 1986

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SUPPORT SYSTEMS FOR PARENTS OF CHILDREN WITH DOWN SYNDROME by HELEN KELSEY-ETMANSKI B.A., Mt. Saint Vincent University, 1974 B. Ed., Mt. Saint Vincent University, 1975 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department of Educational Psychology and Special Education) We accept t h i s thesis as conforming to the requirevd standard THE UNIVERSITY OF BRITISH COLUMBIA July 1986 © Helen Kelsey-Etmanski, 1986 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6 (3/81) ABSTRACT This study investigated the sources of support available to mothers of children with Down syndrome. Three levels of s o c i a l interaction were examined: family support; informal support (friends and neigh-bours), and; formal support (professionals and s o c i a l i n s t i t u t i o n s ) . A questionnaire was ci r c u l a t e d to t h i r t y -two mothers of children with Down syndrome. The questionnaire surveyed those formal and informal systems which were potential sources of support for mothers. Findings indicated that mothers experiences were d i f f e r -e n t i a l l y affected by the i r setting. Mothers were generally s a t i s f i e d with th e i r sources of informal support. In two-parent families fathers were perceived as very supportive of th e i r spouses, while i n one-parent families the mothers r e l i e d on other sources such as friends, neighbours, and extended family for t h e i r support. Urban mothers expressed less s a t i s f a c t i o n with formal systems of support than did mothers l i v i n g i n non-urban areas. Findings indicated that perceiving systems of support as supportive may relate to the quality of the services as well as to the a v a i l a b i l i t y . Table of Contents P a g e Abstract i i L i s t of Tables v i i i Acknowledgement x CHAPTER 1: INTRODUCTION I. Introduction 1 A. Reasons for the Study 1 II . The Concept of Support 4 A. Support as a Construct 4 B. Theoretical Basis for the Present Study 5 1. Ecological Theory of Family Function 5 2. Social Network Theory 6 C. Other Relevant Concepts of Support 6 1. Cobb's Concept of Social Support 6 2. House 1s Concept of Support 7 3. Personal Social Services 7 D. The Need for Support for Families 8 1. ComServ Plan 9 CHAPTER 2: REVIEW OF THE LITERATURE I. Family Support 11 A. Family Acceptance of the Child 11 i i i P a g e B. Successful Adjustment Factors 11 C. The Effects of Family Environment on the Child's Growth 12 II. Informal Support 13 A. Parent to Parent Support 13 B. Neighbourhood Support 13 C. The Value of Informal Support 14 D. Parent Concerns Which Informal Supports Cannot Address 16 II I . Formal Support 19 A. The Need for Professional Help 19 B. The Quality of Professional Services 20 1. Program Evaluation 20 2. Counselling Practices 21 3. C l i n i c a l Services 21 4. Respite Care 22 5. Educational Services 22 C. Changes i n Services Needs Over Time 24 CHAPTER 3: METHODOLOGY AND RESULTS I. Methodology 2 5 A. Statement of the Problem 25 B. Definitions 25 1. Family Support 25 iv Page 2. Informal Support 25 3. Formal Support 26 C. The Present Study 26 1 . Method 26 a. Subjects 26 b. Procedure 26 c. D i s t r i b u t i o n of Questionnaire 27 d. Data Analysis 27 II . Results 28 A. Demography 28 B. Family Support 2 9 C. Informal Support Systems 32 D. Formal Support Systems 34 E. General S a t i s f a c t i o n with Informal and Formal Support 35 F. Urban and Non Urban Sa t i s f a c t i o n with General Support Systems Available 36 CHAPTER 4: DISCUSSION AND CONCLUSIONS I. Discussion 38 A. Introductory Statement 38 B. S i m i l a r i t i e s i n Formal and Informal Support 38 C. Differences Between Formal and Informal Support 3 9 v Page D. Family Support 40 1. Two-parent Families 40 2. One-parent Families 41 3. Siblings 41 4. Extended Family Members 42 E. Informal Support 43 1. Friends 43 2. Other Parents 44 3. Parent Groups 44 4. Neighbours 45 5. Babysitters 46 6. The Influence of an Informal Support Network 46 F. Formal Support 47 1. Characteristics of Positive Professional Support 47 2. Hindrances to Professional Functioning 47 3. Support by Physicians 48 4. Support by Teachers 49 5. Support by Clergy 49 6. Support by Professional Agencies 50 G. General Perception of Support 51 1. Informal and Formal Support Differences 51 v i Page 2. Urban and Non Urban Population Differences 51 I I . Limitations and Conclusions 52 A. Limitations of the Study 52 B. Implications for Further Research 53 C. Conclusions 54 Reference Notes 55 References 56 Appendix I 61 v i i L i s t of Tables Page I. R e s p o n s i b i l i t i e s and Challenges in the Stages of the Family L i f e Cycle 1 8 II . Demographic Information of Families Who Participated i n the Study 29 II I . Numbers of Mothers Who Reside i n Non-Urban Areas Who Perceive Family as Supportive, Not Supportive 30 IV. Percentage of Mothers Who Reside in Non-Urban Areas Who Perceive Family as Supportive, Not Supportive 30 V. Number of Mothers Who Reside i n Urban Areas Who Perceive Family as Supportive, Not Supportive 31 VI. Percentage of Mothers Who Reside in Urban Areas Who Perceive Family as Supportive, Not Supportive 32 VII. Frequency of Perceived Informal Supports from Souces Other Than Family 33 v i i i Page VIII. Percentage of Perceived Informal Supports from Sources Other Than Family 33 IX. Frequency of Perceived Formal Support for Mothers With a Child With Down Syndrome 35 X. Percentage of Perceived Formal Support For Mothers With a Child With Down Syndrome 35 XI. Frequency of Response to General Perception of Informal and Formal Support Systems 36 XII. Frequencies of Expressed S a t i s f a c t i o n / D i s s a t i s f a c t i o n with The General Support Systems for the Urban and Non-Urban Populations 37 ix Acknowledgement I would l i k e to express my appreciation to my thesis advisor, Dr. Sall y Rogow, and to the other members of my committee, Dr. Stanley Blank and Professor Bob Poutt for t h e i r encouragement and assistance. I would l i k e to thank the families who participated i n the study for sharing t h e i r time and personal experiences with me. I extend my thanks also to my friends and re l a t i v e s who offered continual support and encourage-ment, p a r t i c u l a r l y my husband Allan, my mother Marie, and my children Catherine and Theressa. I would l i k e to acknowledge the i n s p i r a t i o n offered by my daughter Elizabeth. x 1 CHAPTER ONE: INTRODUCTION I . I n t r o d u c t i o n A. Reasons f o r the Study There a r e more than e i g h t hundred c h i l d r e n w i t h Down syndrome l i v i n g i n B r i t i s h Columbia. As p a r e n t s t r y t o cope and adapt t o the needs of t h e i r c h i l d r e n , t hey r e a l i z e t h a t handicapped i n d i v i d u a l s p r e s e n t c h a l l e n g e s which consume e n e r g i e s and r e s o u r c e s over and above the demands made by t y p i c a l y o u n g s t e r s . P a r e n t s may a l s o e x p e r i e n c e a n x i e t y and g r i e f . C o n s e q u e n t l y , f a m i l i e s r e q u i r e s u p p o r t i n o r d e r t o m a i n t a i n and n u r t u r e t h e i r o f f s p r i n g w i t h Down syndrome. T h i s t h e s i s a d d r e s s e s two q u e s t i o n s : ( 1 ) Who i s s u p p o r t i n g p a r e n t s i n t h e i r c a r e g i v i n g r o l e s ? (2) What i s the p e r c e i v e d q u a l i t y of the s e s u p p o r t s ? Support has been d e f i n e d i n many ways. T h i s study d e f i n e s s u p p o r t as "a system of community-based r e s o u r c e s which a s s i s t f a m i l i e s i n the p r o v i s i o n o f c a r e t o t h e i r handicapped c h i l d r e n " . There i s a wide spectrum of b e h a v i o r s which i s c h a r a c t e r i z e d as s u p p o r t i v e . T h i s s t u d y was conducted t o i d e n t i f y and d e s c r i b e community r e s o u r c e s which p a r e n t s f i n d h e l p f u l . P a r e n t s were s u r v e y -ed on t h e i r s o u r c e s o f s u p p o r t . Support w i l l t a k e many forms. T h i s study examined 2 the assistance given to parents at three levels of s o c i a l i n t e r a c t i o n : family support; informal support (friends and neighbours), and; formal support (professionals and s o c i a l i n s t i t u t i o n s ) . The concept of support as i t relates to families with handicapped children i s an emerg-ing area of study. The catalyst i n B r i t i s h Columbia has been the decision to close p r o v i n c i a l i n s t i t u t i o n s and to re-allocate resources to the community. Families of children who have handicapping conditions are often faced with a unique set of problems. In addi-tion to the many psychological and emotional d i f f i c u l t i e s and adjustments that are frequently associated with the b i r t h of a handicapped c h i l d , families also are confronted with economic and management challenges. These include increased medical and other extraordinary expenses for health-related conditions and child-care, and time manage-ment d i f f i c u l t i e s r e s u l t i n g from unusual care demands. Nor are the families exempt from the pressures and tensions that a l l families experience to one degree or another i n contemporary Canadian society. Stresses and pressures combine and interact and take th e i r t o l l on the parents of handicapped children. Families derive support and assistance i n diverse ways and from various sources. There are both formal and informal networks that provide support. The extended family and friends form an informal network. Societal 3 i n s t i t u t i o n s such as c h u r c h e s , s c h o o l s , and f a m i l y s e r v i c e agencies:: a r e f o r m a l networks which i n c l u d e p h y s i c i a n s , t e a c h e r s , t h e r a p i s t s , and o t h e r p r o f e s s i o n a l s as an a d d i t i o n a l s o u r c e of s u p p o r t and a s s i s t a n c e . These s u p p o r t networks c o n t r i b u t e t o t h e a b i l i t i e s o f f a m i l i e s t o cope. When t h e s e s u p p o r t systems work w e l l , they p r o v i d e encouragement and s p e c i f i c forms of a s s i s t a n c e . T h i s a u t h o r b e l i e v e s t h a t f a m i l i e s who a r e in f o r m e d t h a t t h e i r c h i l d r e n f a c e s e r i o u s h a n d i c a p s such as Down syndrome b e n e f i t from knowing t h a t t h e r e a r e thos e o u t s i d e of t h e f a m i l y who can a s s i s t them t o a p p r o p r i a t e l y c a r e f o r t h e i r c h i l d r e n . Not o n l y do they need i n f o r m a t i o n and t h e r a -p e u t i c i n t e r v e n t i o n , they need t o f e e l t h a t t h e i r c h i l d r e n have a f u t u r e and a p l a c e i n s o c i e t y . Awareness o f the e x i s t e n c e o f s u p p o r t r e i n f o r c e s t h e i n t e r a c t i o n s which ar e a p a r t of a f a m i l y l i f e and p a r t o f the community l i f e . F u r t h e r m o r e , s u p p o r t t h a t i s p r o v i d e d i n t h e form of s e r v i c e s such as p h y s i o t h e r a p y , a f t e r - s c h o o l c a r e , and an i n f a n t development program a s s i s t s f a m i l i e s i n t h e i r r o l e s as c a r e g i v e r s o f persons w i t h Down syndrome. The encouragement and a s s i s t a n c e o f f e r e d by f a m i l y , f r i e n d s , v o l u n t e e r s , and p r o f e s s i o n a l s a l l f u n c t i o n i n the network o f s u p p o r t . 4 II . The Concept of Support A. Support as a Construct Support i s a multi-dimensional construct which encom-passes a wide spectrum of behaviors and resources, and relates to many f i e l d s of professional endeavour, and/or individual commitment and a c t i v i t y (Morris, 1977; Gallagher, Beckman, and Cross, 1983; Cobb, 1976; Wickler, Wasow, and H a t f i e l d , 1983; Marcus, 1977). The concept of support i s rooted i n the provision of care for persons in a society, and the supportive a c t i v i t i e s give sustenance and aid to individuals both on a day-to-day basis and i n times of c r i s i s . Those variables which have a posi t i v e influence on attitudes and behavior are also seen as supportive. The concept of support and services to families has a long history. In p a r t i c u l a r , the l i t e r a t u r e on adapta-tion to i l l n e s s or c r i s i s i s r i c h with documentation. Gallagher, Beckman, and Cross (1983) have reviewed the h i s t o r i c a l development of the concept of support as i t relates to i l l n e s s . The concept of support as i t relates to d i s a b i l i t y i s emerging as a new trend i n service delivery for persons with handicapping conditions and th e i r f a m i l i e s . 5 B. Theoretical Basis for the Present Study Two t h e o r e t i c a l frameworks provide the basis for t h i s study of support: the ecological theory a r t i c u l a t e d by Bronfenbrenner (1979) and the s o c i a l network theory postulated by Caplan (1976). These theories w i l l be b r i e f l y explained below. 1. Ecological Theory of Family Function Bronfenbrenner postulates an ecological system where the nuclear family i s represented as the inner c i r c l e in a series of concentric c i r c l e s . Neighbourhoods, schools, workplaces, and agencies form an ecological system i n which a family functions. The nuclear family i s affected i n a number of ways by the society of which i t i s a part. Values, attitudes and opportunities are created to a great extent by the larger society. No unit of society can operate i n complete i s o l a t i o n from another part. Bronfenbrenner has i d e n t i f i e d a series of large con-texts which influence events within the immediate family or microsystem. Outside t h i s immediate environment a larger system e x i s t s . In the mesosystem there are complex interactions between the developing person and the environ-ment. The mesosystem involves the i n t e r r e l a t i o n s among the major settings containing the developing person, for example, interactions among family, school, and peer group. Outside the mesosystem i s the exosystem. The exosystem 6 represents formal and informal s o c i a l structures which impinge upon the individual's immediate environment, such as the neighbourhood, and agencies of government. The macrosystem represents the overarching i n s t i t u t i o n a l patterns or general prototypes of the culture of which the micro-, meso-, and exosystems are concrete manifesta-1 tions. 2. Social Network Theory Social network theory describes linkages among individuals and groups. These interactions between individuals influence expectations, behavior, attitudes, and knowledge. Linkages are operationally defined i n terms of network c h a r a c t e r i s t i c s , including size, s a t i s -f a c t i o n , density, connectedness, and frequency of contact (Mitchell and T r i c k e t t , 1980). Social support networks function to nurture and sustain linkages among persons that are supportive on both a day-to-day basis and i n times of need and c r i s i s (Caplan, 1974; Cobb, 1976; Brim, 1975). Both the ecological and network theories share a great deal i n common and focus attention on interpersonal relationships as a source of support. C. Other Relevant Concepts of Support 1. Cobb's Concept of Social Support Support has been described in other ways. Cobb (1976) used the term " s o c i a l support" to describe the meaningful 7 interchange between people which i s based on information rather than on goods or services. This information, i t is suggested, enhances the individual's b e l i e f that he is loved and cared for, that he i s esteemed and valued, and that he belongs to a s o c i a l network. Cobb argues that s o c i a l support f a c i l i t a t e s coping with c r i s i s and adaptation to change, and that the moderating effects of s o c i a l support are found when major tra n s i t i o n s of l i f e or when unexpected cris e s a r i s e . 2. House's Concept of Support House (1981) has i d e n t i f i e d four types of support behaviors: emotional support which involves caring, trust and empathy; instrumental support which provides resources for the ind i v i d u a l i n carrying out his role; informational support which includes giving information or teaching a s k i l l ; and appraisal support which involves information which helps one i n evaluating personal performance. Emotional, instrumental, informational, and appraisal support help families to maintain and encourage th e i r children's development. 3. Personal Social Services "Personal s o c i a l services" (Hepworth, 1982) i s a concept developed to f a c i l i t a t e a caring environment for the delivery of s o c i a l services i n the community. Hepworth defined personal s o c i a l services as "professional 8 and voluntary services which complement, supplement, or are i n the place of services and care rendered by families or friends on an individual basis to r e l a t i o n s , friends, 2 or other in d i v i d u a l s " . A distinguishing c h a r a c t e r i s t i c of t h i s concept of support, as portrayed by the author, i s that e f f e c t i v e services demand personal delivery, with people responding to the needs of others i n a sensitive and appropriate way, preferably i n f a m i l i a r or home surroundings. Both formal and informal systems of support can be given i n personal ways. D. The Need For Support For Families The nature of the support for families of handicapped children may determine the ways in which a family per-ceives and enacts d i s t i n c t i v e areas of family function. The a v a i l a b i l i t y of support helps to form the attitudes and perceptions of the family and strengthens the a b i l i t y to cope with time commitments, pressures, and unfamiliar s i t u a t i o n s . When stress is'high and when there i s an underlying lack of control over the factors which govern one's l i f e , or when there i s a lack of information which needs to be either tapped or accommodated, there i s usually not time available for positive interaction between family members. Parent-child interactions, family structure, s o c i a l climate, interpersonal relationships, family harmony and quality of parenting roles are powerful influences 9 in s o c i a l i z i n g the c h i l d . In addition, parent-child play opportunities, educational and cognitive stimulation a v a i l -able i n the home, emotional support for learning, and cohesiveness of family members (Nihara, Mink, and Meyers (1981); Dunst, T r i v e t t e , and Cross (1986)) influence s o c i a l , psychological and educational growth of children. With support, parents of handicapped children learn to manage the time and energy demands of t h e i r role and they also learn to enhance t h e i r parenting a c t i v i t i e s . 1. ComServ Plan - A Support Plan For Families with  Handicapped Members The s p e c i f i c model of support proposed to meet the long-term needs of persons with developmental d i s a b i l i t i e s was conceptualized by The Canadian Association for Community Liv i n g , formerly The Canadian Association for the Mentally Retarded. The model, named the Comprehensive Community-Based Service Delivery Systems Plan (ComServ Plan, 1972), outlines the requirements for appropriate services for mentally handicapped people i n community settings. This concept of support suggests strategies for service delivery. Community-based services provided close to the home of the handicapped person, comprehensive services which ensure that a l l types of needs w i l l be met, and continuous services which would be available as needed throughout the l i v e s of handicapped people are key features of t h i s model. Also, an important component 1 0 i s a system of delivery which ensures that a wide range of i n d i v i d u a l i z e d services w i l l function as a coordinated unit. As part of the ComServ Plan, families are allocated services and resources which would enhance their a b i l i t i e s to maintain t h e i r children i n t h e i r own homes. This notion i s central to the discussion of support services which c o l l e c t i v e l y are the subject of t h i s thesis. The appropriate services are determined by the individual needs of the handicapped person and his family. Although the nature of services may vary over the l i f e - s p a n of the handicapped i n d i v i d u a l , the quality of services must be maintained i n order to be useful to the individuals. 11 CHAPTER TWO: REVIEW OF THE LITERATURE I • F a m i l y Support A. F a m i l y Acceptance o f the C h i l d P a r e n t s o f handicapped c h i l d r e n d i f f e r i n t h e i r a c c e p t a n c e o f the d i a g n o s i s o f t h e i r c h i l d ' s c o n d i t i o n . Watson and M i d l a r s k y (1979) and F e r r a r a (1979) suggest t h a t p r e v a i l i n g s o c i o - c u l t u r a l a t t i t u d e s i n f l u e n c e p a r e n t a l a t t i t u d e s and b e h a v i o r toward t h e i r m e n t a l l y handicapped c h i l d r e n . Molsa and Ikonen-Molsa ( 1 9 8 5 ) examined t h e a b i l i t y o f f a m i l y members t o a c c e p t a m e n t a l l y handicapped c h i l d i n t o a f a m i l y . They found t h a t 8 3 % of mothers and 86% of s i b l i n g s adapted w e l l t o the presence of a m e n t a l l y h a n d i -capped c h i l d . S i x t y - s e v e n p e r c e n t of f a t h e r s and 75% of g r a n d p a r e n t s were a b l e t o a c c e p t a c h i l d who had a mental h a n d i c a p . B. S u c c e s s f u l Adjustment F a c t o r s G a l l a g h e r , C r o s s , and Scharfman (1981) s t u d i e d the c h a r a c t e r i s t i c s o f p a r e n t s who have made s u c c e s s f u l a d j u s t -ment t o t h e b i r t h o f a handicapped c h i l d . The d a t a from t h i s s t u d y i n d i c a t e d t h a t major s o u r c e s o f s t r e n g t h were the p e r s o n a l c h a r a c t e r i s t i c s o f the p a r e n t s and the q u a l i t y o f the husband-wife r e l a t i o n s h i p . P e r s o n a l c h a r a c t e r i s t i c s a s s o c i a t e d w i t h s u c c e s s were m a t e r n a l ego 1 2 strength and self-confidence, and commitment to a set of supporting values ( i . e . strong r e l i g i o u s b e l i e f s ) . Farber (1959) studied the relationship between marital integration and the frequency of contact with the maternal grandmother. In parents where there was close contact between the mother of the c h i l d and the maternal grandmother, the relationship was found to be supportive to the family. Emotional support was seen as the powerful factor which encouraged the mothers to adapt to the role of parent of a handicapped c h i l d . C. The Effects of Family Environment on the Child's Growth Nuclear families approach the care of the i r mentally handicapped offspring i n various ways. Nevin, McClubbin and Birkebak (1983) found that low c o n f l i c t families with handicapped children possessed greater family strengths in mastery of family events and outcomes. They also showed better physical and mental health. High c o n f l i c t f a m i l i e s , however, were found to have many more stressors which continued over time as chronic s t r a i n . Nihara, Meyers, and Mink (1980) studied families of mentally handicapped children l i v i n g at home. They examined the home environment, family adjustment, and c h i l d c h a r a c t e r i s t i c s . Family adjustment and functioning were found to rel a t e not only to the severity of the child's mental handicap and behavior, but also to family demographic c h a r a c t e r i s t i c s , the climate of the home 1 3 (harmony, expressiveness, and family cohesion) and s p e c i f i c kinds of parental behavior toward th e i r mentally handicapped c h i l d . This study demonstrated the i n t e r -actional nature of the family and the functioning of the c h i l d with a mental handicap. The child's adaptive functioning was related to the parents' a b i l i t i e s to successfully cope with the challenges of mental handicap. I I . Informal Support A. Parent to Parent Support Meadow and Meadow (1971) suggest that parents of handicapped children are r e - s o c i a l i z e d into the new role of caregiver for a handicapped c h i l d . Individuals who may help in thi s process include other parents of handi-capped children and handicapped adults. Scott and Doyle (1984) describe a parent to parent support network offered to parents of newly diagnosed handicapped children. This program provides new parents with an opportunity to discuss problems and to expand th e i r network of support. Featherstone (1980) suggests that parent to parent support encourages new parents to redefine the image of themselves as parents of excep-t i o n a l children i n a more posit i v e way. B. Neighbourhood Support Riger and Lavrakas (1981) maintain that people's l i f e circumstances, p a r t i c u l a r l y t h e i r stage i n the l i f e cycle, may play a c r i t i c a l role i n determining th e i r degree of attachment to l o c a l community settings. Age, in p a r t i c u l a r , appears to distinguish among levels of physical attachment, while the presence of children distinguishes among those who are s o c i a l l y involved with-in a neighbourhood. Children serve as important informa-tion l i n k s among neighbours (Keller, 1968) and the i r presence may f a c i l i t a t e the development of functional as well as communicative t i e s . Fischer (1977) found that people with children were less emotionally attached to t h e i r neighbourhoods, but more strongly connected in terms of l o c a l organizational and s o c i a l t i e s . C. The Value of Informal Support German and Maisto (1982) studied the relationship of a perceived family support system to the i n s t i t u t i o n a l placement of handicapped children. One hundred twelve mothers were interviewed to assess the relationship of the placement of the c h i l d (home, respite care or r e s i -d e n tial care) to the mother's perception of the extent of her support system and of the stresses acting on the family. The results of thi s study indicated that families derive emotional support from a variety of sources, and that a major source of emotional support that enables a family to maintain the mentally handi-capped c h i l d i n the home i s the presence of both parents in the home. In addition, the mothers of families who chose to ret a i n t h e i r children at home perceived that they received more support from th e i r own parents, ex-tended family members, and had greater a v a i l a b i l i t y of s i t t e r s . Gallagher, Beckman, and Cross, (1983) describe a study by B r i s t o l (1979) i n which the mother's informal support networks were found to have s i g n i f i c a n t impact on maternal stress. Mothers who reported the least stress were receiving more help from a l l sources, includ-ing t h e i r spouse, friends, r e l a t i v e s , and parents of other handicapped children. Dunst, T r i v e t t e , and Cross (1986) examined the role of s o c i a l support on parental attitudes toward their mentally handicapped c h i l d , family i n t e g r i t y , and the child's behavior, development and functioning. Results showed that family support and resources make a d i f f e r -ence i n a handicapped child ' s opportunity for growth and development. Several areas of family functioning were s i g n i f i c a n t l y related to support and resources. Respondents who indicated more s a t i s f a c t i o n with t h e i r s o c i a l support networks indicated being less protective 1 of t h e i r children. Overprotection increased with increasing age of the c h i l d for respondents with low 2 support but not for respondents with high support. When s o c i a l supports are available, the c h i l d has more 1 6 opportunity for s o c i a l i n t e r a c t i o n . Results indicated that the e f f e c t s of diagnosis, physical problems and l i m i t a t i o n s of the c h i l d could be mediated by s o c i a l support. Respondents with children who had low develop-mental quotients or with children who were physically impaired indicated that t h e i r offspring had more l i m i t a -tions in both i n t r a - and extra-family opportunities. However, families with larger s o c i a l support networks had fewer l i m i t a t i o n s placed on them in terms of i n t r a -3 and^ extra-family opportunities. Limitations increased with increasing c h i l d age among families with limited s o c i a l support. Financial resources strengthen family i n t e g r i t y and have impact on the cognitive development of the c h i l d . Respondents from high socio-economic status families with larger incomes indicated that they had more integrated family units, more family opportuni-t i e s and fewer f i n a n c i a l problems. Children from high income families showed smaller developmental quotient losses between measurements. Children were more l i k e l y to show smaller developmental quotient losses i f they were of f s p r i n g of parents with supportive s o c i a l net-works. D. Parental Concerns Which Informal Supports Cannot  Address When a c h i l d i s born with, or aquires a handicapping condition, many stressors are present in the family. 1 7 In addition to the p o t e n t i a l l y s t r e s s f u l changes which occur as a res u l t of r e s p o n s i b i l i t y for the well-being of another person, r e a l l o c a t i o n of f i n a n c i a l resources, and s h i f t s i n the communication system to accommodate the new person i n the family (Wandersman, Wandersman, and Kahn, 1980), other s t r e s s f u l changes occur for the couple. Often there i s a need to interact with medical professionals with more frequency than would be expected with a t y p i c a l infant; decisions regarding medical i n t e r -vention must be made; changes i n values are required; s o c i a l supports may break down, and; time demands for infant care may increase beyond t y p i c a l or expected requirements. The usual physical i s o l a t i o n of a couple with a newborn may be exacerbated by the sit u a t i o n where the network i s too d i s s i m i l a r i n the experience and attitudes are too d i s s i m i l a r to a l l e v i a t e the uncertainty of the new parents (Wandersman, Wandersman, and Kahn, 1980). Stress may be present around issues of care for the c h i l d throughout his/her l i f e cycle. A table provided by Nevin, McCubbin, and Birkebak (1983) summarizes these concerns. ~* (See Table 1.) 1 8 TABLE I RESPONSIBILITIES AND CHALLENGES IN THE STAGES OF THE FAMILY LIFE CYCLE Infant Birth—2 years Pre-School 3—5 years School Age 6—12 years Adolescent 13—20 years Young Adult 21 Infant Initial Crisis Grieving-Intensive Medical Services; Diagnostic Period-Pre-School Ongoing Medical/Health Monitoring-Procurement of therapy services Prolonged dependency of child requiring added physical care— School age School Programming Ongoing Appraisal of Child's Development Establishment of member's Roles in the Family Dealing with Sibling Discrepancies re: abilities Parents' Instrumental and Maintenance Tasks Limited Involvement in Normal Social Engagements Adolescent Cognitive Grasping of "Permanence" with Disability Parental • Chi ld— • Identity, Issues of Child— "Marginality" Increased Physical Size of Child—Impact on Care More Involved Adaptive Equipment— often necessitated by complications, Sexuality Issues Discussion about Guardianship Issues Relating to Ongoing Care of Child • Young Adult Placement Plans—Depending upon feasibility of: employment self care mobility leisure Issues of parent-child interaction, s i b l i n g development, parental adjustment, and coping a b i l i t i e s have been discussed i n the l i t e r a t u r e . A comprehensive review of the l i t e r a t u r e by McNeill (1981) reveals many sources of concern for parents of a handicapped c h i l d . I l l . Formal Support A. The Need for Professional Help Brown (1978) addressed the question, "What group seeks professional help?". The data suggested that help-seekers experienced more troublesome events than i n d i -viduals who did not seek help. The magnitude of stress-f u l episodes i n the l i v e s of t h i s group was greater than in the other groups studied. The author suggested that professionals were contacted i n situations where stress-f u l events and higher levels of role s t r a i n were exhibit-ed. For t h i s group, the reliance on formal support systems seemed to r e f l e c t the inadequacies of informal supports, and a reluctance to keep asking informal asso-ciates for assistance. Lloyd-Bostock (1976) suggested that the perceptions of parents regarding services are closely t i e d to t h e i r r e l a t i o n s h i p with the individuals acting as agents of those services. She noted that the individuals with whom the parents came i n contact had importance i n parents' experiences of the service. Often contact with 20 a p a r t i c u l a r l y helpful of sympathetic individual marked a turning point i n understanding and coping with the c h i l d and family problems. As well as the help they offered, professionals were praised when the i r attitudes were p o s i t i v e , t h e i r acceptance of and sometimes affec-tion for the c h i l d as an individual were shown, and t h e i r encouragement to the family was such that the parents were helped to f e e l that the problems, though great, were not unique and insuperable.^ B. The Quality of Professional Services 1. Program Evaluation Program evaluators often recognize the need to include consumer information i n an assessment of how well a service i s being employed (Sommers et a l . , 1979). Within the general population, the majority of people who seek help from professional services are s a t i s f i e d with what they obtain (Gurin et a l . , 1960; H i l l , 1969). Rosenblatt and Mayer (1972), i n fact, found that for educated women needing assistance with family problems, the help received from professionals was more s a t i s f y i n g than that received from friends and r e l a t i v e s . Several studies have evaluated the consumer s a t i s f a c t i o n of programs for mentally handicapped children and t h e i r f a m i l i e s . These studies w i l l be reported below. 21 2. Counselling Practices Pueschel and Murphy (1976) assessed the counselling practices of physicians at the b i r t h of a c h i l d with Down syndrome. Four hundred fourteen parents were asked to respond to a questionnaire on the professional counselling practices at the b i r t h of the i r c h i l d . Nearly one half of the parents reported that professionals had presented the diagnosis i n a sympathetic manner, while twenty-five percent of parents said that t h e i r physicians were abrupt and blunt. Some parents commented that they were given very l i t t l e information and that t h e i r physicians were evasive; two parents were to l d of t h e i r c h i l d ' s condition by mail. The authors stressed the need for an awareness of counselling techniques at th i s sensitive period of parental adjustment. 3. C l i n i c a l Services Sommers and Nycz (1978) monitored consumer s a t i s -f a c tion with the c l i n i c a l services provided to exception-a l children. Parents and case coordinators were asked to rate the l e v e l of s a t i s f a c t i o n with c l i n i c a l services received at a comprehensive medical c h i l d care centre. Most parents indicated o v e r a l l s a t i s f a c t i o n with the service, however, s p e c i f i c suggestions included that there was a need to improve communication, c l i n i c a l follow-up, and to provide more educational advice on the children assessed. 22 4. Respite Care Ptacek et a l . ( 1 9 8 2 ) evaluated parental s a t i s f a c t i o n with respite care f a c i l i t i e s for families of children with severe handicaps. These services gave parents the opportunity to have time away from t h e i r children. A variety of respite options were evaluated. The data from a follow-up questionnaire indicated that the parents f e l t extremely posi t i v e about the service. 5. Educational Services Norman and Mullin ( 1 9 8 3 ) reported the results of two studies which assessed parents' attitudes and percep-tions of t h e i r severely mentally handicapped c h i l d and that chi l d ' s involvement i n education. The f i r s t study, the Pennsylvania Survey, examined the attitudes toward school placement by families of children either l i v i n g at home or l i v i n g i n i n s t i t u t i o n a l settings. For the families with children residing at home, the opportunity for school programming gave parents th e i r f i r s t consis-tent, regular time away from t h e i r children. Parents reported improvement i n parent-child interactions as a r e s u l t of t h i s "release time". Interactions between other family members were also generally perceived to be improved. Eighty-two percent of these parents f e l t that the family had adjusted well to the child's atten-7 dance i n public school. Skill-development on the part of the c h i l d was also 23 reported. Eighty-two percent of the parents or guardians reported improvement i n at least one of the child' s func-t i o n a l areas. The greatest improvement (49% of the responses) was shown i n areas of communication s k i l l s , followed by appropriate behavior (39% of the responses) 8 and play s k i l l s (34% of the responses). In the second study reported, the Alberta Study, two groups of parents were interviewed: parents with children remaining i n the home, and parents whose c h i l d -ren had been previously i n s t i t u t i o n a l i z e d . The ques-tionnaires asked for demographic data, parents' percep-tions of changes i n the i r child's functional a b i l i t y , parents' understanding of the goals and objectives of the program, and the parents' perceptions concerning the impact of the school program on individual family members as well as on the family dynamics. Of the parents with children l i v i n g at home, sixty-four percent reported that t h i s was the f i r s t time t h e i r c h i l d had been away from home for any extended period (except i n ho s p i t a l ) . Sixty-seven percent of the parents reported that the attendance of th e i r c h i l d i n the educational program p o s i t i v e l y influenced th e i r interactions with the i r c h i l d , increased posi t i v e family dynamics, and sixty percent indicated that the school experience better q met the needs of the i r c h i l d . Eighty-two percent of the parents f e l t the program, despite a perceived absence 24 of performance changes, was b e n e f i c i a l for the c h i l d in r e l a t i o n to general family attitude and better 1 0 presentation of th e i r c h i l d . The major outcome of the program for the parents whose c h i l d had been i n s t i t u -t i o n a l i z e d was i n the area of improved care and increased parent-child interactions ( v i s i t s ) . C. Changes i n Service Needs Over Time Suelzle and Keenan (1981) examined the a v a i l a b i l i t y of family support networks over the l i f e changes of children. Four stages of childhood were analyzed: pre-school, elementary school, teenage years, and young adult-hood. U t i l i z a t i o n of personal and professional support networks by parents varied over the l i f e stages of th e i r mentally handicapped children. In general, parents of younger children u t i l i z e d more services and support net-works, while parents of older children were less support-ed, more is o l a t e d , and more i n need of expanded services. 25 CHAPTER T H R E E : METHODOLOGY AND R E S U L T S I . M e t h o d o l o g y A . S t a t e m e n t o f P r o b l e m T h i s s t u d y a d d r e s s e s t h e q u e s t i o n s o f a v a i l a b i l i t y a n d q u a l i t y o f s u p p o r t f o r f a m i l i e s who h a v e a c h i l d w i t h Down s y n d r o m e . The s p e c i f i c q u e s t i o n a d d r e s s e d w a s : "What a r e t h e m a j o r s o u r c e s o f i n f o r m a l a n d f o r m a l s u p p o r t f o r f a m i l i e s ? " T h i s s t u d y i n v e s t i g a t e d t h e f o l l o w i n g c a t e g o r i e s o f s u p p o r t : 1 . F a m i l y s u p p o r t 2 . I n f o r m a l s u p p o r t s y s t e m s 3 . F o r m a l s u p p o r t s y s t e m s B . D e f i n i t i o n s 1 . F a m i l y S u p p o r t F a m i l y s u p p o r t i s d e f i n e d a s s u p p o r t c o m i n g f r o m t h e s p o u s e , o t h e r c h i l d r e n i n t h e f a m i l y , a n d e x t e n d e d f a m i l y m e m b e r s . 2 . I n f o r m a l S u p p o r t I n f o r m a l s o c i a l s u p p o r t i s t h a t w h i c h i s t h e r e s u l t o f i n t e r p e r s o n a l r e l a t i o n s h i p s w i t h s i g n i f i c a n t p e r s o n s o t h e r t h a n r e l a t i v e s , who a r e w i t h i n t h e f a m i l y ' s s o c i a l c o n t a c t s . N e i g h b o u r s , b a b y s i t t e r s , c o - w o r k e r s , f r i e n d s , a n d o t h e r p a r e n t s o f c h i l d r e n w i t h h a n d i c a p p i n g c o n d i -t i o n s w o u l d a c t a s i n f o r m a l s o c i a l s u p p o r t s . 26 3. Formal Support Formal s o c i a l support comes from relationships with a s o c i a l agency, i n s t i t u t i o n , and/or individual profes-sionals such as physicians, therapists, or teachers who may or may not work out of a s o c i a l agency. The profes-sional person may function as administrator of a program which employs other s t a f f members to carry out a particu-l a r task, or as a di r e c t service provider. C. The Present Study This study was modelled aft e r the American study by Fewell, Belmonte, and Ahlersmeyer (1982). Question-naires were di s t r i b u t e d to mothers of children with Down syndrome throughout B r i t i s h Columbia. This section w i l l describe the population surveyed, the questionnaire, methods of data analysis, and the results obtained. 1. Method a. Subj ects The population was mothers of children with Down syndrome. The participants were contacted through B r i t i s h Columbians for Mentally Handicapped People. The data was based on the responses to the questionnaires. b. Procedure The questionnaire was adapted from the Fewell, Bel-monts and Ahlersmeyer study (1982) who used this question-naire to survey four hundred families of children with 27 Down syndrome i n United States. Data pertaining to r e l i a -b i l i t y and v a l i d i t y were not available i n the American study. The Vancouver-Richmond Association's Research Committee suggested s l i g h t r e v i s i o n to the Fewell et a l . questionnaire i n order to accommodate the B r i t i s h Columbian population. The questionnaire was revised to be relevant to the B r i t i s h Columbian population. See Appendix I for the questionnaire. c. D i s t r i b u t i o n of Questionnaire An envelope containing a cover l e t t e r , the question-naire, and a stamped return envelope was sent to each subject. Most questionnaires were returned to the re-searcher by mail. Of the one hundred questionnaires d i s t r i b u t e d thirty-two were returned. Data are based on these r e p l i e s . d. Data Analysis The data from the questionnaires were analyzed for the following information: demography, family support systems, informal support systems, and formal support systems. The researcher attempted to discover what supports were available to families and how important these supports were perceived to be. The number of respon-dents choosing each alternative i n a question was t a l l i e d , t o t a l s were converted to percentages. A chi square test was carried out to discern the general perception of informal and formal support systems. A chi square test 28 was also used to evaluate the general s a t i s f a c t i o n with support systems i n the urban and non urban populations. II . Results A. Demography Thirty-two mothers responded to the questionnaire. Fif t e e n of these parents resided in the urban area, eleven in small c i t i e s , and six in r u r a l areas. Of the t h i r t y -two families, twenty-nine families were two parent families and three were single parent families. In twenty-seven of the families the father was employed f u l l - t i m e ; i n ten of the families the mother had f u l l -time employment. Six mothers were employed part-time. Twenty of the fathers and twenty-two of the mothers were high school graduates. In seventeen of the families the c h i l d with Down syndrome was male; i n f i f t e e n of the families the c h i l d with Down syndrome was female. See Table II for the demographic information of families who participated i n the study. 29 TABLE II DEMOGRAPHIC INFORMATION OF FAMILIES WHO PARTICIPATED IN THE STUDY Urban Small Rural City 1. Number of Families 15 11 6 2. Two Parents in the Home 12 11 6 3. One Parent in the Home 3 0 0 4. Father Employed Fulltime 11 10 6 5. Mother Employed Fulltime 6 3 1 7. Father High School Graduate or Above 11 7 2 8. Mother High School Graduate or Above 12 7 3 9. Child With D.S. Male 8 5 4 10. Child with D.S. Female 7 6 2 B. Family Support Data regarding family support was c l a s s i f i e d into two groups: non-urban and urban populations. See Tables III through VI for the tabular data described below. Seventeen (100%) mothers from the non-urban areas report-ed that they were highly supported by the i r spouses. Thirteen (76%) reported that t h e i r other children were very supportive, one parent (6%) reported that s i b l i n g s were not available, and three parents (18%) indicated that the s i b l i n g s were neither very supportive nor unsupportive. Nine (53%) respondents reported that t h e i r extended families were very supportive, two respondents (12%) stated that t h e i r extended families were not 30 available, and six respondents (35%) indicated that th e i r extended families were neither very supportive nor un-supportive. TABLE III NUMBERS OF MOTHERS WHO RESIDE IN NON-URBAN AREAS WHO PERCEIVE FAMILY AS SUPPORTIVE, NOT SUPPORTIVE Spouse Siblings Extended Family Frequency Frequency Frequency Very Supportive 17 13 9 Not Supportive 0 0 0 Not Available 0 1 2 Other 0 3 6 TABLE IV PERCENTAGE OF MOTHERS WHO RESIDE IN NON-URBAN AREAS WHO PERCEIVE FAMILY AS SUPPORTIVE, NOT SUPPORTIVE Spouse Siblings Extended Family • Very Supportive 100% 76% 53% Not Supportive 0% 0% 0% Not Available 0% 6% 12% Other 0% 18% 35% In the urban population twelve mothers (80%) reported that t h e i r spouses were very supportive i n the parenting r o l e . Three mothers (20%) reported that they did not 31 l i v e w i t h t h e i r s p o u s e s . T e n o f t h e m o t h e r s (67%) r e p o r t -e d t h a t t h e i r o t h e r c h i l d r e n w e r e v e r y s u p p o r t i v e , o n e m o t h e r (7%) r e p o r t e d t h a t h e r o t h e r c h i l d r e n w e r e n o t s u p p o r t i v e , a n d f o u r m o t h e r s (26%) i n d i c a t e d t h a t t h e i r o t h e r c h i l d r e n w e r e n e i t h e r v e r y s u p p o r t i v e n o r u n s u p p o r -t i v e . E i g h t f a m i l i e s (53%) i n d i c a t e d t h a t t h e i r e x t e n d e d f a m i l i e s w e r e v e r y s u p p o r t i v e , f o u r m o t h e r s (27%) i n d i c a t -e d t h a t t h e i r e x t e n d e d f a m i l i e s w e r e n o t a v a i l a b l e , a n d t h r e e m o t h e r s (20%) i n d i c a t e d t h a t t h e i r e x t e n d e d f a m i l i e s w e r e n e i t h e r v e r y s u p p o r t i v e n o r u n s u p p o r t i v e . T A B L E V NUMBER OF MOTHERS WHO R E S I D E I N URBAN A R E A S WHO P E R C E I V E F A M I L Y AS S U P P O R T I V E , NOT S U P P O R T I V E Spouse Siblings Extended Family Frequency Frequency Frequency Very Supportive 12 10 8 Not Supportive 0 1 0 Not Available 2 0 4 Other 1 4 3 32 TABLE VI PERCENTAGE OF MOTHERS WHO RESIDE IN URBAN AREA:: WHO PERCEIVE FAMILY AS SUPPORTIVE, NOT SUPPORTIVE Spouse Siblings Extended Family Very Supportive 80% 67% 53% Not Supportive 0% 7% 0% Not Available 13% 0% 27% Other 7% 26% 20% C. Informal Support Systems Twenty-six of the mothers (81%) reported that friends were very supportive of th e i r parenting r o l e , six mothers (19%) indicated that t h e i r friends were neither very supportive nor unsupportive. Twenty-one respondents (66%) indicated that other parents were very supportive, eleven mothers (34%) indicated that other parents were neither very supportive nor unsupportive. Fourteen mothers (44%) indicated that parent groups were very supportive, one mother (3%) reported that parent groups were unsupportive, and seventeen mothers (53%) indicated that parent groups were neither very supportive nor un-supportive. Sixteen mothers (50%) reported that neigh-bours were very supportive, f i v e mothers (16%) indicated that neighbours were unsupportive, and eleven mothers (34%) indicated that they were neither very supportive nor unsupportive. Fi f t e e n respondents (47%) reported 33 that babysitters were very supportive, two mothers (6%) reported that t h e i r babysitters were not supportive, and f i f t e e n mothers (47%) reported that t h e i r babysitters were neither very supportive nor unsupportive. See Tables VII and VIII for the tabular data on informal support systems. TABLE VII FREQUENCY OF PERCEIVED INFORMAL SUPPORTS FROM SOURCES OTHER THAN FAMILY Friends Other Parent Neighbours Babysitters Parents Groups Very Supportive 26 21 14 16 15 Not Supportive 0 0 1 5 2 Other 6 11 17 11 15 TABLE. VIII PERCENTAGE OF PERCEIVED INFORMAL SUPPORTS FROM SOURCES OTHER THAN FAMILY Friends Other Parent Neighbours Babysitters Parents Groups Very Supportive 81% 66% 44% 50% 47% Not Supportive 0% 0% 3% 16% 6% Other 19% ' 34% 53% 34% 47% 34 D. Formal Support Systems Twenty-four mothers (75%) r e p o r t e d t h a t the c h i l d ' s p h y s i c i a n was v e r y s u p p o r t i v e , two mothers (6%) r e p o r t e d t h a t t h e p h y s i c i a n s were not s u p p o r t i v e , and s i x mothers (19%) i n d i c a t e d t h a t t h e i r p h y s i c i a n s were n e i t h e r v e r y s u p p o r t i v e nor u n s u p p o r t i v e . Twenty-four respon d e n t s (78%) i n d i c a t e d t h a t t e a c h e r s were v e r y s u p p o r t i v e , seven mothers (22%) i n d i c a t e d the t e a c h e r s were n e i t h e r v e r y s u p p o r t i v e nor u n s u p p o r t i v e . Twelve mothers (38%) r e p o r t -ed t h a t t h e i r c l e r g y were v e r y s u p p o r t i v e , two mothers (6%) i n d i c a t e d t h a t the c l e r g y were u n s u p p o r t i v e , and e i g h t e e n mothers (56%) d i d not use the s e r v i c e o r d i d not f e e l e i t h e r v e r y s u p p o r t e d o r unsupported. Twelve mothers (38%) r e p o r t e d t h a t p r o f e s s i o n a l a g e n c i e s were v e r y s u p p o r t i v e i n t h e i r p a r e n t i n g r o l e , two mothers (6%) r e p o r t e d t h a t they d i d not f e e l s u p p o r t e d by p r o -f e s s i o n a l a g e n c i e s , and e i g h t e e n mothers (56%) d i d not use t h e s e r v i c e o r d i d not f e e l e i t h e r v e r y s u p p o r t e d o r u n s u p p o r t e d . See T a b l e s IX and X f o r the d a t a r e p o r t -ed on f o r m a l s u p p o r t systems. 35 TABLE IX FREQUENCY OF PERCEIVED FORMAL SUPPORT FOR MOTHERS WITH A CHILD WITH DOWN SYNDROME Physicians Teachers Clergy Professional Agencies Very Supportive 24 25 12 12 Not Supportive 2 0 2 2 Perceived E f f e c t Unknown or Service 6 7 18 18 Not Used TABLE X PERCENTAGE OF PERCEIVED FORMAL SUPPORT FOR MOTHERS WITH A CHILD WITH DOWN SYNDROME Physicians Teachers Clergy Professional Agencies Very Supportive 75% 78% 38% 38% Not Supportive 6% 0% 6% 6% Perceived E f f e c t Unknown or 19% 22% 56% 56% Service Not Used E. General S a t i s f a c t i o n with Informal and Formal Support Table XI indicates the frequencies of response to questions pertaining to general s a t i s f a c t i o n with informal and formal supports. Thirty-one of the respondents were s a t i s f i e d with general informal supports for t h e i r parent-ing r o l e . One respondent was not s a t i s f i e d . Fourteen respondents were s a t i s f i e d with general formal support. 36 F i f t e e n respondents were not s a t i s f i e d with the general formal support they received. When a chi square was calculated on t h i s data, the difference between the groups was s i g n i f i c a n t (p < . 0 1 ) . TABLE XI FREQUENCIES OF RESPONSE TO GENERAL PERCEPTION OF INFORMAL AND FORMAL SUPPORT SYSTEMS YES NO General S a t i s f a c t i o n With Informal Support 31 1 General S a t i s f a c t i o n With Formal Support 14 15 F. Urban and Non-Urban S a t i s f a c t i o n with General  Support Systems Available Within the urban population two respondents i n d i c a t -ed general s a t i s f a c t i o n with the support systems a v a i l -able to them. Thirteen respondents indicated a lack of s a t i s f a c t i o n with the support systems available to them. In the non-urban population, ten respondents reported general s a t i s f a c t i o n with the support systems avai l a b l e . Seven respondents indicated a lack of s a t i s -f a c t i o n with the support systems available to them. See Table XII. A chi square was calculated on thi s data. The difference between the responses of the two groups was s i g n i f i c a n t (p < .01). 37 TABLE X I I FREQUENCIES OF EXPRESSED SATISFACTION/DISSATISFACTION WITH THE GENERAL SUPPORT SYSTEMS FOR THE URBAN AND NON URBAN POPULATIONS General General S a t i s f a c t i o n D i s s a t i s f a c t i o n With Support With Support Urban Population 2 13 Non-Urban Population 10 7 38 CHAPTER FOUR: DISCUSSION AND CONCLUSIONS I. Discussion A. Introductory Statement In t h i s study the author examined the a v a i l a b i l i t y and perceived quality of support provided to mothers of children with Down syndrome. Three areas of support were considered: family support, informal support, and formal support. The results of thi s research lend support to the position advanced by Wandersman et a l . (1980) which suggests that an analysis of the network of support must include the many relationships a family experiences in a family's s o c i a l environment. B. S i m i l a r i t i e s i n Formal and Informal Support In both formal and informal support systems there i s an underlying p r i n c i p l e of provision of care for per-sons i n a society. Supportive a c t i v i t i e s , behaviors, attitudes, and procedures give sustenance, opportunity, and aid to individuals on a day-to-day basis and i n times of c r i s i s . The support and resources offered to an individual or family may be provided through many channels, and i t i s the composite impact of many sources of p o s i t i v e comment, helpful behavior, and general accept-ance which enables parents to f e e l supported. The multi-dimensional nature of the concept of support i s apparent 39 i n both the informal and formal systems of support. House's (1981) four types of support are present i n both systems: emotional support, instrumental support, informa-t i o n a l support, and appraisal support. C. Differences Between Formal and Informal Support Formal support i s based upon provision of care i n s p e c i f i c areas of need. The requests and expectations made of professionals are inherently d i s s i m i l a r from requests and expectations made of r e l a t i v e s and friends. The professional or agency i s responsible for the provi-sion of a service to the i n d i v i d u a l . This service i s defined in terms of the d i s c i p l i n e of the professional or the mandate of the agency. The scope of behavior i s usually narrow, and i s often performed with an element of professional distance. The services rendered are placed within time parameters, and the relationship be-tween the c l i e n t and the professional /agency i s placed within the same time constraints. The scope of behavior i n informal support i s not defined to the same extent as i n formal support. Because there i s not a mandate or d i s c i p l i n e to define the i n t e r -action, the relationship may take any course. There i s not an element of distancing beyond that of i n t e r -active constraints found i n any relationship. Therefore, both persons i n the relationship have the opportunity for mutual s a t i s f a c t i o n . Time r e s t r i c t i o n s are not placed 40 on the interaction in an informal relationship. The opportunities for an ongoing interaction are present, with factors determining longevity of a relationship open to the same sources of mutual s a t i s f a c t i o n or d i s -s a t i s f a c t i o n as i n any relationship. The underlying cohesive factor i s the bond of the relationship, which, when i t i s strong, w i l l enable the relationship to be maintained i n d e f i n i t e l y . D. Family Support This study demonstrated that support from family i s offered to mothers of children with Down syndrome, and that there are several factors which determine the a v a i l a b i l i t y and quality of support. The presence in the home of a spouse, the presence of other accepting children i n the home, and the opportunity to interact with extended family members are factors which give support to mothers. 1. Two-Parent Families In two-parent families mothers receive considerable support from th e i r spouses. When fathers are available, there i s a natural sharing of r e s p o n s i b i l i t y for the child's well-being. Fathers may provide an active adult involvement with the c h i l d , an opportunity for the presence of a mutual interest i n the offspring, role d i v i s i o n , and, in some cases, access to monetary and 41 s o c i a l resources. It i s helpful to mothers to know that there i s another adult who i s deeply interested i n the l i f e events, health, and development of the handicapped c h i l d . 2. One-Parent Families In one-parent families mothers receive support from sources other than a spouse. Involvement with friends, family, acquaintances, church, and community resources may have a meaningful role in the l i f e of a single mother of a handicapped c h i l d . There are vast differences in the personal strengths and resources i n single parents and i t i s necessary to consider the opportunities a v a i l -able when evaluating the support system. Women who have f i n a n c i a l resources are often able to gain access to respite and assistance, information, and services which women who l i v e in poverty cannot afford. The lack of shared r e s p o n s i b i l i t y , e s p e c i a l l y f i n a n c i a l r e s p o n s i b i l i t y may, as Holroyd (1974) suggested, be a source of stress to single mothers. 3. Siblings Siblings are generally very supportive of the i r mothers. However, family circumstance may dictate the degree of involvement a s i b l i n g has with the family. In several cases the c h i l d with Down syndrome was the youngest family member and often there was a considerable 42 age difference between the youngest and oldest c h i l d . Also, i n some instances the children in the family were a l l young and would not be considered either supportive or unsupportive. In the si t u a t i o n where the s i b l i n g was reported as unsupportive, the mother indicated that there was s i b l i n g r i v a l r y related to the closeness i n age of the two children. 4. Extended Family Members This study demonstrated that extended family members may not have the personal resources necessary to be very supportive to families r a i s i n g a handicapped c h i l d . Many families reported that t h e i r extended families l i v e d at considerable distance from them or were not available to the family. Older parents often reported that t h e i r own parents were deceased. In one case the mother's parent was chronically i l l and the family members needed support for th e i r own s i t u a t i o n . In another case the contact with the husband's extended family had been with-drawn afte r the couple had divorced. Those families who reported that t h e i r extended families were supportive indicated a wide spectrum of behaviors which were described as h e l p f u l . Some extended family members exhibited attitudes and caring gestures which showed th e i r understanding and empathy for the s i t u a t i o n . Other family members provided babysitting opportunities for the parents. In one case a large extended family provided 43 many s o c i a l opportunities for the handicapped c h i l d . Fotheringham and Creal (1974) suggest that i t i s through outside relationships that parents perceive acceptance or r e j e c t i o n , and receive assistance and encouragement for the ways i n which various situations are handled. E. Informal Support Results of thi s study indicated that mothers of children with Down syndrome received support from informal sources such as friends, other parents, parent groups, neighbours, and babysitters. Dunst, T r i v e t t e , and Cross (1986) suggest that personal, family, and c h i l d function-ing i n families with a handicapped c h i l d are mediated by s o c i a l support. Personal well-being and parental attitudes are influenced by the s o c i a l support a family receives. 1. Friends The respondents indicated that friends were very supportive of them in the i r role as parent of a handi-capped c h i l d . Friendships provided a wide variety of supportive actions such as babysitting, advocacy, s o c i a l opportunities for the mother and the handicapped c h i l d , and demonstration of acceptance of the si t u a t i o n . Many friends acted as confidants. Some individuals p a r t i c i p a t -ed i n helpful acts such as transporting the other children, sharing material items, or introducing the 44 family to new s o c i a l contacts. Those respondents who indicated that the perceived e f f e c t was other than "very supportive" had friendships through work or i n situations which were not family oriented. The friendships were outside the realm of family function and children were not a main topic of conversation. 2. Other Parents Other parents were also very supportive of the respondents. The mothers indicated that other parents were w i l l i n g to share some of the r e s p o n s i b i l i t i e s i n -herent i n the parenting r o l e . They would pick-up or drop-off children at school i n an emergency si t u a t i o n , or cooperate with babysitting. Also,there was a w i l l i n g -ness to share toys and other resources such as books or a r t i c l e s of in t e r e s t , and to give information on services which would be helpful to the family. Those respondents who indicated that the perceived e f f e c t was other than "very supportive" were parents of older individuals who were more s o c i a l l y i s o l a t e d , or were parents in one-child families who did not have contacts i n the community. Many of the respondents indicated that other parents were sometimes helpful but that they did not perceive them as "very supportive". 3. Parent Groups The majority of respondents did not perceive parent 45 groups as very supportive. The results of th i s finding were confounded because of a lack of d e f i n i t i o n of "parent groups". The author intended t h i s category to include only parent groups for parents of exceptional children such as the l o c a l association for mentally handi-capped persons, a parent group for mutual support, or a group i n i t i a t e d to teach a s p e c i f i c s k i l l for working with the handicapped youngster. However, the category was interpreted more broadly by some respondents to include school consultative meetings, preschool meetings and other general groups. The findings cannot be i n t e r -preted as a r e s u l t . 4. Neighbours Neighbours were perceived as very supportive in one half of the respondents. Some neighbours were w i l l -ing to befriend the c h i l d and to support the parents in t h e i r r o l e . Many respondents indicated that neigh-bours were sometimes h e l p f u l , but often urban dwellers had less opportunity for interaction with th e i r neigh-bours. Three of the respondents indicated that there was no interchange between themselves and the i r neigh-bours. While the urban population had less interaction with t h e i r neighbours, the r u r a l population did not have neighbours available to them. 46 5. Babysitters Many babysitters were very supportive of the parents, however some were considered only somewhat h e l p f u l . The babysitters who were very supportive showed care for the c h i l d , and were available when required. They were w i l l i n g to undertake the extraordinary demands of caring for an exceptional c h i l d . Those babysitters who were described as unsupportive were less f l e x i b l e and more reluctant to carry out at y p i c a l requests. Some parents reported d i f f i c u l t i e s i n finding a suitable baby-s i t t e r , e specially for older children. 6. The Influence of an Informal Support Network Positive attitudes i n friends and family members influence the degree of support a family may experience. The informal supports which are present in a network strengthen the resolve to encourage and guide the child's development (German and Maisto, 1982). This support helps parents to carry through i n the therapeutic pro-cedures and medical treatments, and to make the personal s a c r i f i c e s necessary to ensure adequate care for the c h i l d . Friends, family, and neighbours, in t h e i r support-ing roles, encourage the parents to sustain growth i n the c h i l d , and they may also a s s i s t i n basic care require-ments. In addition, babysitters o f f e r respite to the parents. Parents i n the study were adequately supported by 47 t h e i r informal support system. The respondents indicated a general s a t i s f a c t i o n with the informal supports a v a i l -able to them. F. Formal Support 1 . C haracteristics of Positive Professional Support In making the adjustment to parenting a handicapped c h i l d , s p e c i f i c kinds of support are required for each area of adjustment to be made. Professionals may be very helpful i n bridging the gap between the known and the unknown (Peuschel and Murphy, 1976; Sommers and Nycz, 1978). With t h i s knowledge comes a broader understanding of the special needs of the c h i l d . In addition to t h e i r role requirements within t h e i r d i s c i p l i n e s , supportive personnel are able to a l l e v i a t e fears, clear misconcep-tions, and focus parental actions. Professionals may a s s i s t parents i n acquiring the resources, s k i l l s , and p o s i t i v e attitudes and supports to maintain and enrich the l i f e of the handicapped c h i l d . An encouraging word, an enquiry about family concerns, or a positive attitude toward the c h i l d w i l l make considerable difference to a parent who i s adjusting to the new challenges a handi-capped c h i l d may bring (McAndrew, 1976). 2. Hindrances to Professional Functioning Professionals often are forced to function in an unresponsive milieu. If the resources are not available 48 w i t h i n a system, p r o f e s s i o n a l s f e e l unable t o a d e q u a t e l y s u p p o r t t h e i r c l i e n t . T h i s l a c k of r e s o u r c e s o f t e n r e s u l t s i n f r u s t r a t i o n f o r the p a r e n t s and r o l e c o n f l i c t f o r t h e p r o f e s s i o n a l who i s t r y i n g t o a p p r o p r i a t e l y meet the needs o f the c h i l d . 3. Support by P h y s i c i a n s P a r e n t s p e r c e i v e d p h y s i c i a n s as v e r y s u p p o r t i v e i n most s i t u a t i o n s . Those p h y s i c i a n s who were d e s c r i b e d as v e r y s u p p o r t i v e showed i n t e r e s t and con c e r n f o r the w e l l - b e i n g of the c h i l d . P o s i t i v e comments were made about t h e c h i l d ' s growth and development o r t h e c h i l d ' s a c hievements. The e m o t i o n a l needs as w e l l as t h e p h y s i c a l needs were a d d r e s s e d . Very s u p p o r t i v e p h y s i c i a n s made a p p r o p r i a t e r e f e r r a l s when n e c e s s a r y , and d i d not q u e s t i o n the c h i l d ' s r i g h t t o a c c e s s t o m e d i c a l p r o c e d u r e s . Very s u p p o r t i v e p h y s i c i a n s a s s i s t e d p a r e n t s i n t h e i r r e q u e s t s f o r a p p r o p r i a t e m e d i c a l s e r v i c e s ' f o r t h e i r c h i l d . Some p h y s i c i a n s were d e s c r i b e d as u n s u p p o r t i v e . These p r o f e s s i o n a l s i n d i c a t e d t o p a r e n t s a l a c k of i n t e r e s t i n c h i l d r e n w i t h Down syndrome. One p h y s i c i a n suggested t o the p a r e n t t h a t the o n l y a p p r o p r i a t e s e t t i n g f o r a c h i l d w i t h Down syndrome was i n an i n s t i t u t i o n . Some p a r e n t s r e p o r t e d t h a t r e f e r r a l s f o r i m p o r t a n t m e d i c a l p r o c e d u r e s , t h o s e which a r e recommended f o r a l l c h i l d r e n w i t h Down syndrome such as s c r e e n i n g f o r h e a r i n g problems, were not made. P a r e n t s f e l t t h a t u n s u p p o r t i v e p h y s i c i a n s 49 made t h e i r r o l e as c a r e g i v e r f a r more d i f f i c u l t . P h y s i c i a n s who were n e i t h e r v e r y s u p p o r t i v e nor u n s u p p o r t i v e were u s u a l l y d e s c r i b e d as " g e n e r a l l y h e l p -f u l " . They f o l l o w e d t h r o u g h w i t h p r o c e d u r e s i n ways t h a t m a i n t a i n e d t h e h e a l t h o f the c h i l d , but d i d not e x h i b i t the a d d i t i o n a l q u a l i t i e s which made f a m i l i e s f e e l p a r t i c u l a r l y s u p p o r t e d by them. 4. Support by Teachers Teachers were g e n e r a l l y p e r c e i v e d t o be v e r y suppor-t i v e . The t e a c h e r s were d e s c r i b e d as knowledgeable i n t h e i r d i s c i p l i n e and were a b l e t o communicate w e l l w i t h t h e p a r e n t s . The t e a c h e r s took t h e r e s p o n s i b i l i t y f o r e d u c a t i n g the c h i l d r e n s e r i o u s l y and p r o v i d e d a p p r o p r i a t e l e a r n i n g o p p o r t u n i t i e s f o r them. I n some cases t h e c h i l d r e n were not o f s c h o o l age and d i d not e x p e r i e n c e " t e a c h e r s " . A l s o , some p a r e n t s d e s c r i b e d t h e i r c h i l d r e n ' s t e a c h e r s as "sometimes h e l p -f u l " . I n o t h e r cases the s c h o o l system d i d not educate th e c h i l d r e n i n the way t h a t the p a r e n t s e x p e c t e d . One p a r e n t s t a t e d t h a t she had been r e q u e s t i n g an i n t e g r a t e d s e t t i n g f o r her c h i l d f o r n i n e y e a r s . 5 . Support by C l e r g y S e v e r a l r e s p o n d e n t s i n d i c a t e d t h a t they were v e r y s u p p o r t e d by t h e i r clergymen. Some responde n t s wrote i n g r e a t d e t a i l about t h e d i s t i n c t i o n between t h e su p p o r t 50 they r e c e i v e d from t h e i r b e l i e f i n t h e i r r e l i g i o n and t h a t from t h e i r c h u r c h l e a d e r s . I t was i n d i c a t e d t h a t f o r some i n d i v i d u a l s a s t r o n g b e l i e f i n a r e l i g i o n a s s i s t -ed them t o put the b i r t h of t h e i r handicapped c h i l d i n t o a p e r s p e c t i v e t h a t was h e l p f u l i n s u s t a i n i n g t h e i r e f f o r t s f o r t h e i r c h i l d . However, one respondent com-p l a i n e d t h a t t h e r e was no p l a c e on the q u e s t i o n n a i r e t o r e g i s t e r her l o s s o f f a i t h as a r e s u l t of the c i r c u m -s t a n c e o f her handicapped o f f s p r i n g . Many re s p o n d e n t s d i d not have a r e l i g i o u s a f f i l i a -t i o n and i n d i c a t e d t h a t a r e l i g i o u s l e a d e r was n e i t h e r s u p p o r t i v e nor u n s u p p o r t i v e . One respondent i n d i c a t e d t h a t she wished t h a t she had had a s t r o n g f a i t h a t the time o f her c h i l d ' s b i r t h . Some respondents i n d i c a t e d t h a t t h e i r clergyman was "sometimes h e l p f u l " i n the adjustment t o t h e r o l e of p a r e n t of a handicapped c h i l d . 6. Support by P r o f e s s i o n a l A g e n c i e s P r o f e s s i o n a l a g e n c i e s were not a v a i l a b l e o r were not used by most respon d e n t s o f the q u e s t i o n n a i r e . Many of t h e p a r e n t s r e p o r t e d t h a t t hey d i d not have c o n t a c t w i t h p r o f e s s i o n a l a g e n c i e s such as h e a l t h c e n t r e s , s o c i a l s e r v i c e s , o r mental h e a l t h s e r v i c e s . Some p a r e n t s d i d not r e a l i z e t h a t the s e r v i c e s wre a v a i l a b l e t o them. P a r e n t s who r e p o r t e d t h a t t h e s e a g e n c i e s were unsuppor-t i v e had not had t h e i r r e q u e s t s f o r s e r v i c e s met. 51 For the respondents who described the services as very supportive, there had been considerable e f f o r t made by the professionals to meet the needs of the c h i l d . One parent reported that she had been given access to a drug her daughter required for maintenance of health. Another parent had used speech therapy services for her c h i l d through public health. G. General Perception of Support 1. Informal and Formal Support Differences When the general perception of ov e r a l l informal and formal systems was examined, maternal response cl e a r -ly indicated a s a t i s f a c t i o n with the informal system, but did not indicate that t h i s s a t i s f a c t i o n extended to the formal system as well. Many respondents f e l t unsupported by the formal system. It i s the opinion of the author that the necessary services parents need to f e e l supported by the formal system are not presently in place, or i f they are available, parents do not know how to gain access to them. 2. Urban and Non Urban Population Differences Urban and non urban populations had very d i f f e r e n t perceptions of the i r general support systems. The majority of the urban population had a general d i s s a t i s -f a ction with support, whereas the non urban population indicated a general s a t i s f a c t i o n with their support. 52 It i s the opinion of the author that the families i n the urban area are often not f a m i l i a r with neighbours, and must u t i l i z e more complex systems i n order to gain access to formal support networks. More e f f o r t on the part of the family must be made to have the s o c i a l , educa-t i o n a l , emotional, and health needs met in the urban area, and t h i s may influence the attitudes of the mother in how she perceives her support systems. II . Limitations and Conclusions A. Limitations of the Study The study was limited by the nature of the popula-ti o n surveyed. The parents who j o i n support groups are those who already have resources and personal s k i l l s which enable them to seek out sources of support. Association members would also have personal resources available which the majority of parents of children with Down syndrome may not possess. The researcher was un-able to locate parents of children who were not a f f i l i a t -ed with a parent organization. There i s not a method available to reach families who are not members of an organized group. The population size was very small. The respondents reported that t h e i r informal supports were adequate. A larger, more diverse population i s required in order to analyze the support available to families who do not 53 have the personal and f i n a n c i a l resources necessary to maintain a c h i l d with Down syndrome. The study was also limited by the lack of consistency and a v a i l a b i l i t y of services to parents throughout the province. Services which are available i n the metro-poli t a n area of Vancouver may not be available to parents in other regions of the province, p a r t i c u l a r l y the opportunity for medical consultation and access to f a c i l i t e s . Information of the v a l i d i t y and r e l i a b i l i t y of the questionnaire was unavailable to the researcher. The research tool was also altered to accommodate the Canadian population. B. Implications for Further Research An area of research which i s necessary i s the study of i n d i v i d u a l i t y of families i n their perception of support systems. What ch a r a c t e r i s t i c s i n individuals and i n families help them to perceive gestures, services, and systems as supportive? Also, what l i f e experiences shape the individuals so that they perceive t h e i r support systems i n either positive or negative ways? Are there ways that formal systems delive r services which parents perceive as being unsupportive? Are there c r i t i c a l periods when formal support i s necessary for families? The role of parent associations i n f a c i l i t a t i n g 54 access to services must be addressed. Do presently established parent associations give d i r e c t i o n to parents regarding the a v a i l a b i l i t y of services in the community? How do parents learn about services and resources that are available to the i r children? Who i s lobbying for the co-ordination of services and for the services to be made accessible to the families of children with special needs? C. Conclusions Although families f e e l generally supported by the i r informal systems of support, there i s a general d i s s a t i s -f a ction with the formal system of support. There i s a great need to assess what services are presently a v a i l -able, to catalogue these services, to examine the ways in which parents are made aware of these services, and to help parents f i n d the services they require. Systems which co-ordinate professional e f f o r t , such as a provin-c i a l c l i n i c for persons with Down syndrome, would be a d i r e c t way to provide appropriate care for the children. There may also be gaps i n service which need to be addressed. Parents of children with handicapping condi-tions require the support of the community to make the role of caregiver a manageable task. 55 R e f e r e n c e N o t e s C h a p t e r 1 1 B r o n f e n b r e n n e r , U . The e c o l o g y o f human d e v e l o p m e n t : E x p e r i m e n t s b y n a t u r e a n d d e s i g n . C a m b r i d g e : H a r v a r d U n i v e r s i t y P r e s s , 1979. 2 H e p w o r t h , P . F o r m a l a n d i n f o r m a l c o m m u n i t y s u p p o r t s e r v i c e s : The e l d e r l y i n C a n a d a . The S o c i a l  W o r k e r , 1982, 50, 1, 10. C h a p t e r 2 D u n s t , C , T r i v e t t e , C . , a n d C r o s s , A . M e d i a t i n g i n f l u e n c e s o f s o c i a l s u p p o r t : P e r s o n a l , f a m i l y a n d c h i l d o u t c o m e s . A m e r i c a n J o u r n a l o f M e n t a l D e f i c i e n c y , 1986, 90, 4, 409. 2 I b i d . , 409. 3 I b i d . , 4 1 1 . 4 I b i d . , 413. ^ N e v i n , R . , M c C u b b i n , H . , B i r k e b a k , R . A s s e s s m e n t a n d p r o m o t i o n o f f a m i l y c o p i n g w i t h s t r e s s o r s o f d i s a b i l i t y . P e d i a t r i c S o c i a l W o r k , 1983, 13, 1, 25. L l o d y - B o s t o c k , S . P a r e n t s e x p e r i e n c e o f o f f i c i a l h e l p a n d g u i d a n c e i n c a r i n g f o r a m e n t a l l y h a n d i c a p p e d c h i l d . C h i l d : C a r e , H e a l t h , a n d D e v e l o p m e n t , 1976, 2, 333. 7 N o r m a n , C . a n d M u l l i n s , J . P a r e n t s p e r c e p t i o n s c o n -c e r n i n g t h e i m p a c t o f e d u c a t i o n o f f e r e d t o t h e i r r e t a r d e d c h i l d . The M e n t a l R e t a r d a t i o n a n d L e a r n -i n g D i s a b i l i t i e s B u l l e t i n , 1983, 11, 99. 8 I b i d . , 98. 9 I b i d . , 98. 1 0 I b i d . , 99. 56 References Brim, 0. Macro-structural influences on c h i l d develop-ment and the need for childhood s o c i a l indicators. American Journal of Orthopsychiatry, 1975, 45 (4), 516-524. B r i s t o l , M. "Maternal coping with a u t i s t i c children: adequacy of interpersonal supports and effects of c h i l d c h a r a c t e r i s t i c s . 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F a m i l i e s o f d e v e l o p m e n t a l l y d e l a y e d c h i l d r e n : A r e v i e w o f t h e l i t e r a t u r e a n d a s t u d y o f t h e B . C . I n f a n t D e v e l o p m e n t P r o g r a m . U n i v e r s i t y o f B r i t i s h C o l u m b i a : M a s t e r o f S o c i a l Work T h e s i s , 1 981 . M a r c u s , L . P a t t e r n s o f c o p i n g i n f a m i l i e s o f p s y c h o t i c c h i l d r e n . A m e r i c a n J o u r n a l o f O r t h o p s y c h i a t r y , 1977, 47, 3, 388-399. M e a d o w , K . a n d Meadow, L . C h a n g i n g r o l e p e r c e p t i o n s f o r p a r e n t s o f h a n d i c a p p e d c h i l d r e n . E x c e p t i o n a l  C h i l d r e n , 1971, 38, 1, 21-27. M i t c h e l l , R . E . a n d T r i c k e t t , E . J . S o c i a l n e t w o r k s a s m e d i a t o r s o f s o c i a l s u p p o r t : A n a n a l y s i s o f t h e e f f e c t s a n d d e t e r m i n a n t s o f s o c i a l n e t w o r k s . C o m m u n i t y M e n t a l H e a l t h J o u r n a l , 16, 27-45. M o l s a , P . , a n d I k o n e n - M o l s a , S . The m e n t a l l y h a n d i -c a p p e d c h i l d a n d f a m i l y c r i s i s . J o u r n a l o f M e n t a l  D e f i c i e n c y R e s e a r c h , 1985, 29, 4, 309-314. M o r r i s , R . C a r i n g f o r v s . c a r i n g a b o u t p e o p l e . S o c i a l  W o r k , 1977, 22, 5, 353-359. N e v i n , R . , M c C u b b i n , H . , a n d B i r k e b a k , R . A s s e s s m e n t a n d p r o m o t i o n o f f a m i l y c o p i n g w i t h s t r e s s o r s o f d i s a b i l i t y . P e d i a t r i c S o c i a l W o r k , 1983, 3, 1, 23-30. N i h a r a , K . , M e y e r s , C . E . , a n d M i n k , I . Home e n v i r o n m e n t , f a m i l y a d j u s t m e n t , a n d t h e d e v e l o p m e n t o f m e n t a l l y r e t a r d e d c h i l d r e n . A p p l i e d R e s e a r c h i n M e n t a l  R e t a r d a t i o n , 1980, 1, 5-24. N i h a r a , K . , M i n k , I . , a n d M e y e r s , C . E . R e l a t i o n s h i p b e t w e e n home e n v i r o n m e n t a n d s c h o o l a d j u s t m e n t o f TMR c h i l d r e n . A m e r i c a n J o u r n a l o f M e n t a l D e f i c i e n c y , 1981, 86, 1, 8-15. 59 Norman, C., and Mullins, J. Parents' perceptions con-cerning the impact of education offered to t h e i r retarded c h i l d . The Mental Retardation and Learning  D i s a b i l i t i e s B u l l e t i n , 11, 96-101. Ptacek, L., Sommers, P., Graves, J., Lukowicz, P., Keena, E., Haglund, J., Nycz, G. Respite care for families of children with severe handicaps: An evaluation study of parent s a t i s f a c t i o n . Journal of Community  Psychology, 1982, 10, 20-23. Pueschel, S. and Murphy, A. Assessment of counselling practices at the b i r t h of a c h i l d with Down syndrome. American Journal of Mental Deficiency, 1976, 81, 4, 325-330. Riger, S. and Lavrakas, P. Community t i e s : Patterns of attachment and s o c i a l interaction i n urban neigh-bourhoods. American Journal of Community Psychology, 1 981 , 9, 1 , 55-66. Rosenblatt, A., and Mayer, J. Helpseeking for family problems: A survey of u t i l i z a t i o n and s a t i s f a c t i o n . American Journal of Psychiatry, 1972, 28, 126-130. Scott, S. and Doyle, P. Parent-to-parent support. The  Exceptional Parent, 1984, 14, 1, 15-22. Sommers, P. and Nycz, G. Monitoring consumer s a t i s f a c -t i o n with the c l i n i c a l services provided to excep-t i o n a l children. American Journal of Public Health, 1978, 68, 9, 903-905. Sommers, P., Griese, A., Theye, G., and Jones, W. Medical-educational interaction for exceptional children. Wisconsin Medical Journal, 1979, 78, 2, 1-5-19. Suelzle, M. and Keenan, V. Changes in family support networks over the l i f e cycle of mentally retarded persons. American Journal of Mental Deficiency, 1 981 , 86, 267-271 . Wandersman, L., Wandersman, A., and Kahn, S. Social support i n the t r a n s i t i o n to parenthood. Journal  of Community Psychology, 1 980, 8, 332-342. Watson, R. and Midlarsky, E. Reactions of mothers with mentally retarded children: A s o c i a l perspective. Psychological Reports, 1979, 45-309-310. c k l e r , L., Wasow, M., and H a t f i e l d , E. S e e k i n g s t r e n g t h s i n f a m i l i e s of d e v e l o p m e n t a l l y d i s a b l e d c h i l d r e n . S o c i a l Work, 1983, 28, 4, 313-315. 61 APPENDIX I Quest ionnai re on Family 5upport Systems Demographics 1. D3te t h i s form was completeds / / mo. day year 2. C h i l d ' s s e x : male female 3. C h i l d ' b i r t h d a t e : / / 4. mother's b i r t h d a t e : / / 5. F a t h e r ' s b i r t h d a t e : / / 6i. E t h n i c / R a c i a l Background: Father or Mother o r male guardian female guardian Black _____ _ Caucasian O r i e n t a l _____ Other '  (p lease s t a t e ) 7. Type of a r e a : Inner c i t y Urban (population o( 50,000) Smal l c i t y (popula t ion 2,500 to 49,99i) Rural (2, 500 o r l e s s ) _____ Olr.ar (popula t ion ) 8. Indicate the guardians in the home of the c h i l d : Female Wale None Natura l parent Adoptive parent Fos te r parent Other r e l a t i v e (Please s t a t e r e l a t i o n s h i p ) Parents' / Guardians' Education: Check highest attained: Father some high school high school diploma some college diploma bachelor's degree some graduate work master's degree ^ post-master's work unknown ^ Employment and Income of Parents / Guardians: Employment Status Father Mother. f u l l time part time . unemployed never worked can't work r e t i r e d deceased other 64 11. Occupation Father Mother professional own/manage c l e r i c a l sales craftsman ' blue c o l l a r service worker • not applicable •_ other ' 12. How many s i b l i n g s does the c h i l d have? 13. The c h i l d ' s health i n general i s : good f a i r pour State the health problems your c h i l d has (which you consider serious) 14. At what age did your c h i l d begin receiving educational services at l e a s t once a week? n £ • « „4.w, 49-60 months 0-6 months after 60 months 7-12 months 13-24 months 25-36 months 37-48 months 65 y 15. Please l i s t the age and sex of your child's.other s i b l i n g s : yrs. mos. brother s i s t e r yrs. mos.' brother s i s t e r _yrs. mos. brother s i s t e r yrs. mos. brother s i s t e r 16. Check the following services ycur c h i l d has received from s p e c i a l i z e d personnel i n educational programs: . physical therapy _____ occupational therapy language therapy health care services ' other _ none 17. In how many educational programs has your c h i l d been enrolled? none one two three four or more 18. In our family, d i s c i p l i n e i s : _ very s t r i c t • s t r i c t sometimes s t r i c t , sometimes easy easy going very easy going R e l i g i o u s A f f i l i a t i o n 19. Do you have, a r e l i g i o u s a f f i l i a t i o n ? 1 Yes No If you answered ques t ion 19 with " N o M , r . p lease do not answer quest ions 20, 21, 22, 23. 20o What i s your cur ren t r e l i g i o u s a f f i l i a t i o n ? C a t h o l i c m Jewish P r o t e s t a n t , Please s p e c i f y denomination Other , Please s p e c i f y ' 21 . I was r a i s e d : • ' With no r e l i g i o n ' — C a t h o l i c Jewish / P ro tes tant (please s p e c i f y denomination Other (p lease s p e c i f y ' 22. How o f t e n do you p a r t i c i p a t e i n r e l i g i o u s s e r v i c e s ? not at a l l l e s s than once a month at l e a s t once a month weekly more than once a week 23. I am s a t i s f i e d with the support I rece ive from t h i s r e l i g i o u s group as i t p e r t a i n s to my handicapped c h i l d : — not at a l l very h e l p f u l _ sometimes h e l p f u l extremely h e l p f u l 1 1 . . I 1 - C . . 1 . . . . . . FAMILY SUPPORT Listed below are sources of support that often are helpful to members of families r a i s i n g a young c h i l d . Please c i r c l e the response that best describes how helpful these sources have been to your family during the past three to s i x months. - . Key: -1 Not applicable 0 Not available to us 1 Not at a l l helpful 2 Sometimes helpful 3 Generally helpful 4 Very helpful 5 Extremely helpful 1. lYly parents -1 M Li 1 2 3 4 5 2. My spouse's parents -1 0 1 2 3 4 5 3. My r e l a t i v e s / kin -1 LI 1 2 3 4 5 4 . My spouse's r e l a t i v e s / kin -1 0 1 2 3 4 5 5. Husband or wife -1 0 1 2 3 4 5 6 ' My friends -1 D 1 2 3 4 5 7. My spouse's friends -1 0 1 2 3 4 5 8. My own children -1 0 I 2 3 4 5 9. Other parents -1 0 1 2 3 4 5 10. Professional helpers -1 0 1 2 3 4 5 11. My family or c h i l d ' s physician -1 0 1 2 3 4 5 12. Co-workers -1 0 1 2 3 4 5 68 -1 0 1 2 3 4 5 -1 0 1 2 3 4 5 _ 1 0 1 2 3 4 i 5 -1 0 1 2 3 i 4 5 13. Parent groups - 1 0 1 2 3 4 5 14. School / day care centre - 1 0 1 2 3 4 5 15. Professional agencies - 1 0 1 2 3 4 5 (public health, s o c i a l services, mental health) \ 16. Family, Infant, or Preschool . - 1 0 1 2 3 4 5 Program : \ 17. S o c i a l groups / clubs 18. Church 19. Neighbours 20. Babysitters EDUCATIONAL For these items, consider your "family , : as the i n d i v i d u a l ( s ) with whom you usually l i v e . If you l i v e alone, consider family as those with whom you have the strongest emotional t i e s . Key: D Not applicable 1 5trongly disagree 2 Moderately disagree 3 Neither agree nor disagree 4 Moderately agree 5 Strongly agree Please c i r c l e the answer that best describes your s i t u a t i o n . 1. I t has been d i f f i c u l t to obtain the educational services my c h i l d needs. 0 1 2 3 4 5 2. I t has been d i f f i c u l t to obtain the extra therapy services my c h i l d needs. 0 1 2 3 4 5 69 3. I was not provided the information and tr a i n i n g y necessary to work with my c h i l d at home during my c h i l d ' s early l i f e . 0 1 2 3 4 5 4. I t has been my experience that I have d i f f i c u l t y i n communicating with my c h i l d ' s teachers. . 0 1 2 3 4 5 5. Educational personnel have been supportive i n nurturing and providing guidance for my c h i l d . 0 1 2 3 4 5 6. Outside of my spouse, members of my family are not helpful or involved i n my child's education. 0 1 2 3 4 5 7 . I worry about my ch i l d ' s education, p a r t i c u l a r l y the type and qu a l i t y of programs available to my c h i l d i n the future. 0 1 2 3 4 5 .8. If I could choose my ch i l d ' s teacher, I would select one who i s very s t r i c t with the students. 0 1 2 3 4 5 9. I f e e l that integration of handicapped and non-handicapped chi l d r e n i s an unimportant i.--sue facing the educational system. . 0 1 2 3 4 5 10. I need to have close contact with my c h i l d ' s teacher i n order to ensure s k i l l development. 0 1 2 3 4 5 11. A major contribution to my family has been the opportunities For me to get to know other •.' parents with s i m i l a r concerns. 0 1 2 3 4 5 12. In my chi l d ' s case, educational involvement and program p a r t i c i p a t i o n i s primarily tho mother's r e s p o n s i b i l i t y . 0 1 2 3 4 5 / ' " *' 13. If given the opportunity, I would work with my c h i l d and his/her teacher i n my c h i l d ' s educational program. 0 1 2 3 4 5 /' 14. A focus i n the public school system should be a knowledge and awareness of handicapping conditions by non-handicapped students. 0 1 2 3 4 5 * 7, / . h SPECIAL EDUCATIONAL CONCERNS 1. If I had had a better understanding of s k i l l development, teaching techniques, and reasons for methods employed, I would have worked more . e f f e c t i v e l y with my c h i l d during the early years. 0 1 2 3 4 5 2. My c h i l d ' s teachers do not believe me when I t e l l them what my c h i l d does at home. 0 1 2 3 4 5 j 3. Members of the educational s t a f f help us get the i services we f e e l our c h i l d needs. • 0 1 2 3 4 5 4. I worry about the type and qua l i t y of the educational programs available to my c h i l d i n the future. 0 1 2 3 4 5 5. I f I could choose my ch i l d ' s teacher, I would select one who has a strong background i f ! c h i l d development and progression of s k i l l s . 0 1 2 3 4 5 6. I w i l l be very disappointed i f nan-handicapped classmates are not included i n my ch i l d ' s educational program. 0 1 2 3 4 5 7. I w i l l need to have closer contact with my chi l d ' s teacher than I would i f my c h i l d were not handicapped. 0 1 2 3 4 5 8. A major contribution of my c h i l d ' s educational program has been the opportunities i t provides parents to get to know parents with s i m i l a r concerns. 0 1 2 3 4 5 RELIGION IF you do not have a r e l i g i o u s a f f i l i a t i o n , p lease do not answer these q u e s t i o n s . Please go on to the next page. 1. ITIy clergyman was h e l p f u l to me when my c h i l d was b o r n . 2. My r e l i g i o n has helped me to understand and accept my c h i l d . 3. I am s a t i s f i e d that my r e l i g i o n i s f u l f i l l i n g my f a m i l y ' s s p i r i t u a l needs. 4 . Having t h i s c h i l d has brought me c l o s e r to God and my r e l i g i o n . 5. I am s a t i s f i e d with a v a i l a b i l i t y of r e l i g i o u s i n s t r u c t i o n f o r my c h i l d . 6. I f e e l comfortable i n tak ing my c h i l d to c h u r c h . 7. I am more a c t i v e i n my church s i n c e my c h i l d was b o r n . 8. I f I had problems a s s o c i a t e d with my c h i l d , I would seek help and guidance from members of my church o r c l e r g y . 9 . I seek comfort through p r a y e r . 10. ffly f a i t h cont inues to be a source of help and support i n r a i s i n g my c h i l d . 11. The church has been more suppor t ive to me than o ther agencies i n our community by p r o v i d i n g the help I need as the parent of t h i s c h i l d . 12. l i ly church i s a source of persona l and fami ly s t r e n g t h i n everyday l i v i n g . 13. Most of my s o c i a l a c t i v i t i e s invo lve members of my c h u r c h . 0 1 2 3 4 5 0 1,2 0 1-2 3 3 0 1 2 3 4 0 1 0 1 0 0 2 2 3 3 2 2 3 3 3 3 4 5 4 5 5 4 4 4 4 5 5 0 1 2 3 4 5 5 5 0 1 2 3 4 5 4 5 4 5 2 3 4 5 73 FAMILY'S SOCIAL SUPPORT 1. I am s a t i s f i e d that I can turn to my family for help when something i s troubling me. 0 1 2 3 4 5 2. I am s a t i s f i e d with the way my family talks things over with me and shares problems with me. 0 1 2 3 4 5 3. I am s a t i s f i e d that my family accepts and supports my wishes to take on new a c t i v i t i e s or directions. 0 1 2 3 4 5 4. I am s a t i s f i e d with the way my family expresses a f f e c t i o n and responds to my emotions, such as anger, ' sorrow, or love. 0 1 2 3 4 5 5. I am s a t i s f i e d with the way my family and I share time together. 0 1 2 3 4 5 5. Often I f s e l very lonely. 0 1 2 3 4 5 7. I v i s i t my friends whenever I want. 0 1 2 3 4 5 8. I am s a t i s f i e d with the relationships I have with ,-my neighbours. —. 0 1 2 3 4 5 9. 1 am s a t i s f i e d with the amount of time I spend away from my c h i l d , for s o c i a l reasons (example: movies, v i s i t i n g friends, concerts). 0 1 2 3 4 5 10. My neighbours and I s o c i a l i z e a great deal together. 0 1 2 3 4 5 11. My co-workers are a large part of my s o c i a l l i f e . 0 1 2 3 4 5 12. I am s a t i s f i e d with the a v a i l a b i l i t y of professional persons (counselors, doctors, teachers) to talk to about my c h i l d . 0 1 2 3 4 5 13. I f e e l better after I talk to a professional about my c h i l d . - 0 1 2 3 4 5 74 14. I d G n't f e e l the professionals I have dealt with understand my problems or concerns. 0 1 2 3 4 5 15. I am s a t i s f i e d with the amount and q u a l i t y of services provided to my c h i l d i n my community. 0 1 2 3 4 5 16. I think the support services i n my community adequately meet the needs of myself and my c h i l d . 0 1 2 3 4 5 17. I am s a t i s f i e d with the relationships I have with my co-workers. x 0 1 2 3 4 5 / / f OPTIONAL INFORMATION \ Please do not F i l l i n t h i s page unless you f e e l comfortable i n doing s o . I f you do provide the i n f o r m a t i o n , the researcher w i l l endeavour to send you a summary of research f i n d i n g s . Name* .  Address? Telephone Numbsr: Comments s 

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