Exploring the beliefs of Japanese mothers caring for a child with disabilities.

586551 research-article2015

JFNXXX10.1177/1074840715586551Journal of Family NursingSato et al.

Article

Exploring the Beliefs of Japanese Mothers Caring for a Child With Disabilities

Journal of Family Nursing 2015, Vol. 21(2) 232–260 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840715586551 jfn.sagepub.com

Naho Sato, RN, PHN, DNSc1, Akiko Araki, RN, PHN, DNSc, MBA2, Ryuko Ito, RN, PHN, DNSc3, and Kazuko Ishigaki, RN, PHN, PhD4

Abstract The purpose of this study was to describe the beliefs of Japanese mothers caring for a child with disabilities to advance knowledge about beliefs of Japanese families experiencing illness. A semistructured interview was conducted with eight mothers who had a child with disabilities (physical, intellectual, and/or developmental). The interview invited their reflections about “mutual thoughts of family members” and family relationships in the context of daily life of caring for a child with disabilities. Data were qualitatively analyzed inductively and deductively and compared with the Common Tentative Framework of Japanese Family Beliefs developed from previous research. The analyses highlighted new understandings of the influence of Japanese cultural and societal beliefs on the family’s experience of having a child with disabilities. Clinical implications are discussed and directions for future research suggested.

1Chiba

University Graduate School of Nursing, Chiba, Japan Rehabilitation Center, Chiba, Japan 3Juntendo University, Chiba, Japan 4Ishikawa Prefectural Nursing University, Kahoku, Japan 2Chiba

Corresponding Author: Naho Sato, Associate Professor, Chiba University Graduate School of Nursing, 1-8-1, Inohana, Chuo-ku, Chiba 260-8672, Japan. Email: [email protected]

Downloaded from jfn.sagepub.com at Bobst Library, New York University on May 24, 2015

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Keywords beliefs, family, mothers, children with disabilities, Japan, Illness Beliefs Model

Families Who Care for Children With Disabilities According to the Ministry of Health, Labour and Welfare (2011), 78,000 children in Japan younger than 18 years of age have physical disabilities and 159,000 children younger than the age of 18 have intellectual disabilities. There is a large body of research that documents the impact on families of having a child or multiple children with disabilities. Families who care for children with disabilities often confront numerous challenges that affect both the parents and the whole family, including the well siblings (Keller & Honig, 2004; Vermaes, van Susante, & van Bakel, 2012). Although each family is unique and there is a wide variation in the diagnosis of “disability” (including physical, developmental, and/or intellectual disability), families who have a child with disabilities report chronic sorrow and distress (Drotar, Baskiewicz, Irvin, Kennell, & Klaus, 1975), stress (Woodman, 2014), and negative changes in their health and family functioning (Lee, 2013; Raina et al., 2005). They also show great courage and resilience as they adapt and learn to manage the child’s disabilities and maintain daily routines and family life (McConnell & Savage, 2015; Rolland & Walsh, 2006; Swallow, Macfayden, Santacroce, & Lambert, 2012). In a recent meta-analysis, Dyches and her colleagues found that positive parenting has been associated with better child outcomes in families experiencing developmental disabilities of a child, with older parents having greater effects than younger parents (Dyches, Smith, Korth, Roper, & Mandleco, 2012). Carole Robinson’s early family research found that all family members do not experience the impact of chronic illness equally. Regardless of which family member was diagnosed with a serious chronic illness, it was the mother who bore the major responsibility for illness care and illness management, often with consequences to the mother’s health and well-being (Robinson, 1998; Robinson & Wright, 1995). The impact of a young child’s disabilities on the mother has been further supported in research by Lee (2013). In this study, higher levels of stress, depressive symptoms, and poor sleep quality remained high over time. Kimura and Yamazaki (2013) explored the lived experience of Japanese mothers who had multiple children with intellectual disabilities. In this phenomenological study, they uncovered three themes: “Abandoned hope for having an ordinary family,” “Accumulating physical and mental fatigue,” and “Searching for the positive experiences in parenting multiple children with disabilities.” Even


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though these mothers struggled to accept the reality of their situation, they searched for the positive experiences in parenting their children with disabilities. Similarly, Tanaka (2010) explored mothers’ perceptions of their children with severe motor and intellectual disabilities, and found that these mothers came to affirm their children’s lives and become aware of their own worth as a mother after confronting the uncertainty and the reality of their circumstances. Wakimizu, Fujioka, and Yoneyama (2010) interviewed 20 mothers about the empowerment process experienced by Japanese families caring for a child with developmental disabilities. Mothers reported that, over time, the family shifted from confusion and family conflict in caring for the disabled child to family unity, increased collaboration with health care providers and educational staff, and an expectation that their child would have a valuable life.

The Illness Beliefs Model (IBM) The IBM was developed from clinical scholarship and research with families experiencing illness as a model for advanced nursing practice with families. The original description of the IBM was developed by Lorraine Wright, Wendy Watson, and Janice Bell and first published in 1996 (Wright, Watson, & Bell, 1996). It was soon translated into Japanese by the late Dr. Chieko Sugishita, a professor at the University of Tokyo, and published in Japanese in 2002 (Wright, Watson, & Bell, 2002). The word, “beliefs,” is a very complex idea to translate into the Japanese language; nevertheless, family nurses in Japan became curious about the practice implications of the IBM and began a program of family research that later became known as the Japanese Family Belief Study Group. In 2009, Lorraine Wright and Janice Bell published an updated version about the IBM that was translated into Japanese by Dr. Nami Kobayashi in 2011 (Wright & Bell, 2011). Beliefs are the lenses though which we view the world, guiding the choices we make, the behaviors we choose, and the feelings with which we respond. Our beliefs are the blueprint from which we construct our lives and intertwine them with the lives of others. (Wright & Bell, 2009, p. 19)

Beliefs are individual cognitive-behavioral processes that can affect biopsychosocial-spiritual health and well-being (Wright & Bell, 2009). Illness beliefs may decrease possibilities for discovering solutions and enhance illness suffering or, conversely, may increase solution possibilities, decrease illness suffering, and invite healing (Wright & Bell, 2009).


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The IBM offers research-based, relational family-level interventions for creating a context for changing beliefs, distinguishing illness beliefs, challenging constraining beliefs, and strengthening facilitating beliefs (Bell & Wright, 2011; Wright & Bell, 2009). At the heart of the matter, advanced clinical practice using the IBM is focused on distinguishing illness beliefs held by family members, health care professionals, and the larger societal and cultural contexts within which individuals and families are nested, as a portal for exploring and softening illness suffering in individuals and families (Wright, 2015). The Japanese Family Belief Study Group brought together family nurse researchers from several universities in Japan who focus on diverse populations of families across the life span and across a broad range of illnesses. Beliefs about health and illness vary greatly across individuals, families, and cultures. The Japanese Family Belief Study Group has been qualitatively documenting and describing beliefs held by family members in Japan who are experiencing illness. They are also beginning to use this knowledge to examine family nursing interventions that promote family health and healing. The focus of this research report is on recent findings that extend an understanding of the IBM by highlighting the influence of Japanese culture and society on illness beliefs held by individuals and families.

Beliefs of Family Members Caring for Child With Disabilities Various studies have examined the lived experience of families with disabled children using the language of experiences, thoughts, feelings, values, meanings, and concerns. King et al. (2006) investigated the worldviews, values, and priorities of families of children with autism and Down syndrome. Families reported that raising a child with a disability can be a life changing experience that spurs the family to examine their belief system. Ichihara, Araki, Sato, Konno, and Nakamura (2007) focused on family decision making in tracheostomy of children with severe disabilities, and found that the family’s values/ beliefs of “there are difficulties and conflicts making a decision as the surrogate of my child” and “having value as parents and being the mother/father of a medically fragile child” (p. 81) affected the parents’ decision making. Few research reports have focused on the illness beliefs of families or parents of children with disabilities. Tanigawa and Nakamura (2009) explored the beliefs of mothers of children with the severe motor and intellectual disabilities. They found that mothers held many constraining beliefs that created difficulty in their acceptance of the child’s disabilities. They also found the


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existence of facilitating beliefs that seemed to be related to an increase in mothers’ acceptance of their child’s disabilities. Ito, Araki, Sato, and Ishigaki (2010) conducted a secondary analysis of family interview data to clarify the illness beliefs held by parents of disabled children during the phase of transition to home. In this study, the extracted beliefs were classified according to the nine categories of illness beliefs identified by Wright and colleagues (1996), which included (a) beliefs about diagnosis; (b) beliefs about etiology; (c) beliefs about healing and treatment; (d) beliefs about prognosis; (e) beliefs about mastery, control, and influence; (f) beliefs about religion-spirituality; (g) beliefs about the place of illness in our lives and relationships; (h) beliefs about the role of professionals; and (i) beliefs about the role of family members. The research team of Ito et al. found several beliefs that did not fit the IBM categories identified above. They became curious about the possibility that there might be illness beliefs held by individuals and families that are unique to the cultural and societal context of Japan. Thus, they decided to conduct research that used a modified framework for identifying beliefs that took into account the influence of the cultural context. The existing research provides strong rationale for extending the exploration of illness beliefs to consider the influence of larger systems beliefs of the culture and society on the beliefs held by individuals and families. Therefore, the purpose of this study was to describe the beliefs of Japanese mothers caring for a child with disabilities to advance knowledge about beliefs of Japanese families with more emphasis on the cultural context.

Method Development of a Study Framework Prior to undertaking the present study, a framework of illness beliefs was developed by the Japanese Family Belief Study Group (hereafter referred to as the study group) based on the findings from their program of research. The study group, which consists of researchers in various areas of nursing in Japan, has been conducting qualitative descriptive studies to explore and identify the illness beliefs of families of patients/clients in each professional practice area, that is, geriatric, home care, cancer, pediatric, adult chronic, and psychiatry. The principal investigator of the present study (Dr. K. Ishigaki) developed a Common Tentative Framework of Japanese Family Beliefs based on the existing data from several completed research projects. This plan of action was supported and inspired by Chiba University School of Nursing, Center


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Sato et al. Main Beliefs

Sub-Beliefs Relaonships with society

Beliefs about Relaonships

Relaonships with family members Relaonships with medical/social service professionals Degree of societal and own acceptance of disability/handicap

Beliefs about Death and illness

Meaning of disability/handicap Aributes of medical/social professionals Approach to coping with illness/disability, Approach to facing health decline, death, and grief

Beliefs about Role norms

Role-related-norms regarding childrearing Norms about family and the roles within it Physical condion

Beliefs about self

Self-assurance Self-concept

Figure 1. Common Tentative Framework of Japanese Family Beliefs.

for the Creation and Dissemination of a New Japanese Nursing Science incorporating “Culturally Appropriate Care.” An expert panel then examined and refined the tentative beliefs framework. The Common Tentative Framework of Japanese Family Beliefs consists of four main beliefs: (a) beliefs about relationships, (b) beliefs about death and illness, (c) beliefs about norms, and (d) beliefs about self. Each main belief has categories of subbeliefs (see Figure 1).


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Study Design This research used a qualitative descriptive design to describe the beliefs of mothers of children with disabilities.

Definition of a Belief For this study, the research team used the IBM definition of belief, that is, a belief is the “truth” of a particular reality that influences biopsychosocialspiritual structure and functioning. In our conversations, we speak and listen to one another from these domains of “truths”—explanations, values, and obligations based on our beliefs—that have arisen from the social, interactional, religious, and cultural domains in which we live. (Wright & Bell, 2009, p. 27)

A family belief was defined by the research team as the premise of values or convictions, which is shared by family members and influences the family unit as a whole. Interviews with the mothers invited their reflections about beliefs of family members and their perceptions about “mutual thoughts of family members” and family relationships in the context of daily life of caring for a child with disabilities.

Procedure This study was approved by the Ethics Review Board at the Chiba University Graduate School of Nursing and the Institutional Review Committee of the rehabilitation center in a suburban area in Eastern Japan. After receiving ethical approval, the investigators conferred with the clinician and social worker at the rehabilitation center to identify children and mothers who met the recruitment criteria: (a) the family lived with the disabled child in their home, (b) the child was 1 to 12 years old, (c) the child had a congenital or acquired disability that affected the child physically and/or developmentally, (d) the physical and mental status of both child and mother was stable, and (e) family members had lived a sufficient time with the disabled child to be able to reflect on their family’s daily life and experiences. Mothers who met the criteria were informed about the study by the clinician during a routine visit to the rehabilitation center that included a clinic service, rehabilitation service, and day care center. Mothers who agreed to receive more information about the study were introduced to the researcher. The researcher then offered a detailed description of the study aim and participation procedures to the mother, and arranged contact approximately 1 week


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later to confirm whether the mother wished to participate. This description included the following statements regarding informed consent: assurance of privacy, the guarantee of participation on a voluntary basis, the assurance of anonymity, and the security to choose not to participate as well as cancel participation at any time during the study without negative consequences to the services they were receiving. This information was given to each mother through both verbal explanation and written documentation prior to the interview, and each mother signed a consent form to confirm her agreement.

Study Participants Eight mothers, aged 36 to 43 years old, participated in this study (see Table 1 for demographic data about the mothers and children). All mothers were homemakers. The nine children with disabilities included two girls and seven boys aged 2 to 12 years (one family had twins who were both experiencing disabilities). The diagnoses of the children included physical, intellectual, and development disabilities: cerebral palsy, congenital malformation, chromosomal disease, and autistic spectrum disorder. Four of the nine children had been hospitalized in the neonatal intensive care unit (NICU) for 2 to 3 months after their birth. Only one child needed medical support on a daily basis. Two families lived in an extended family arrangement with the grandparents and the spouse’s siblings. Most of the mothers were receiving assistance with child care from grandparents and/or relatives—some of whom lived in the family and some who did not.

Data Collection and Management Data were collected at a location chosen by each mother, for example, the home, hospital, day care center, or the researcher’s office at the university. A semistructured interview was conducted with each mother, using a narrative approach to elicit the individual and family beliefs about maintaining daily family life with her child. At the interview, the mother was asked to recall two experiences: (a) when her child was discharged from the hospital and (b) the experiences in maintaining the family daily life with her child. To better understand each of these experiences, the research interview was guided by the following questions: How did your family feel at that time? Did your family have any concern or worries about the family’s daily life? What did your family consider important at that time? What events or experiences made you to change your way of thinking? How did the family cope with the disabilities, the thoughts and reactions of other family members, and unfulfilled hopes?


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Autistic spectrum disorder

Twins (both children have ASD) Nothing in particular Nothing in particular Medical care Respirator Tube feeding Suctioning CIC Hospitalized at NICU Diagnosed at 8 years old

Hospitalized at NICU Hospitalized at NICU

Hospitalized at NICU

Other family members who provide support for child rearing

Grandmother and relatives

Mother and father

Mother and father

Grandparents and mother’s sibling

Grandmother

Mother, father, and sibling None

Mother, father, and sibling None

Mother, father, and sibling Grandparents

Mother, father, and grandparents

None Mother (single), grandparents, mother’s siblings, and their family Mother, father, and sibling Grandparents

Family members living with child with special needs

Elementary School Day care service Attended at EIU

Junior high school Day care service Preparing for elementary school School for special need children Short stay service Home nurse visit

Day care service Preparing for nursery school Attended at EIU Preparing for kindergarten Day care service

Day care service

Day care service Attended at EIU

Social services/school, etc.

Note. NICU = neonatal intensive care unit; EIU = early intervention unit (inpatient); ASD = autistic spectrum disorder; CIC = clean intermittent self-catheterization.

H

G

10 years, male

12 years, Chromosomal male disease 6 years, male Autistic spectrum disorder 9 years, male Congenital malformation

E

F

4 years, male Autistic spectrum and female disorder

D

C

2 years, Cerebral palsy female 4 years, male Congenital malformation

A

B

3 years, male Cerebral palsy

Mother

Diagnosis/condition

Child’s age and gender

Medical information

Table 1. Demographics of the Participants.

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One research interview was conducted with each mother, lasting between 46 and 85 min (the first three authors conducted the research interviews). The interviews were audio-recorded with the mother’s consent and transcribed verbatim by the research team.

Data Analysis On the basis of the Common Tentative Framework of Japanese Family Beliefs mentioned earlier, qualitative analysis was performed both inductively and deductively: (a) The verbatim transcripts were read several times with careful attention to content, implying the existence of a belief; meaningful phrases having to do with beliefs were then extracted; (b) the phrases were then coded to extract the essential meaning about beliefs; (c) codes were compared and contrasted with each other, then grouped by similarity; (d) the research team chose the term concrete expression to explain how the family belief became visible; concrete expressions were developed for each group; and (e) the concrete expressions were compared with the Common Tentative Framework of Japanese Family Beliefs and then classified into subbeliefs. The process of analysis is shown in Figure 2. To assure trustworthiness, the first three authors of this article analyzed the interviews independently using the process identified above and then discussed their analyses with each other. The differences between the analyses were discussed until consensus was reached. The fourth author who was the principal investigator of the research group reviewed the process of analysis.

Results Analysis of the interview data revealed a number of noteworthy individual and family beliefs reported by mothers about their experience of having a child with disabilities. The research team chose the term concrete expression to explain how an individual or family belief became visible or observable. Within these concrete expressions, there were several new family beliefs that emerged, which were not previously accounted for in the Common Tentative Framework of Japanese Family Beliefs. The results are reported by listing each main family belief and then the subbeliefs that emerged from the analysis. Each subbelief is elucidated with concrete expressions using excerpts from the mothers’ narratives.

Beliefs About Relationship The main category of beliefs about relationships is composed of two subbeliefs: “Relationships with society” and “Relationships with family members.”


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Phase 1: Inducve analysis meaningful phrases in mother’s narrave “I think it was difficult for grandparents to learn a lot of new things. So if grandparents would help me to some extent, I am sasfied. It’s OK. It’s impossible for them to understand and do everything of my son.” “I don’t think my husband can understand enough about our son. He can’t be with him all the day like me. So, I almost give up to ask any support.”

codes

I am sasfied if grandparents help me to some extent.

concrete expressions

[Lowering hopes for other family members]

I almost give up to ask any support from my husband.

Phase 2: Deducve analysis Main Beliefs

Sub-Beliefs Relaonships with society

࣭࣭࣭࣭࣭

Relaonships with medical/social service professionals

[Feeling of cooperaon with their husband in raising our child] ࣭࣭࣭࣭࣭

Relaonships with family members

࣭࣭࣭࣭࣭

Beliefs about Relaonships

[Lowering hopes for other family members]

Common Tentave Framework of Japanese Family Beliefs

Figure 2. Example of the analysis process.

Table 2 identifies the subbeliefs and the concrete expressions of these subbeliefs, that is, how the family belief became visible. Relationships with society. The concrete expressions of this subbelief were extracted from the interview regarding mothers’ worries, concerns, difficulties, and isolation in the society in which the family belongs, for example, in the neighbor, at the kindergarten, in the public places. The concrete expressions that fit with the Common Tentative Framework of Japanese Family Beliefs include Feeling haji (ashamed) in our neighborhood,


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Sato et al. Table 2. Beliefs About Relationship: Subbeliefs and Concrete Expressions.

Concrete expressions, that is, how the family belief became visible

Subbelief Relationships with society

Relationships with family members

Feeling haji (ashamed) in our neighborhood Worrying about how we are viewed by society Becoming meiwaku (nuisance) to other people Difficulty in building relationship with parents of healthy children/feeling isolated Efforts to maintain relationships by making people understand the disability Forging and maintaining relationships in the community Being helped by other mothers of disabled children Living up to the hopes of family members Desire to continue the unchanged relationship from the past Lowering hopes about other family members Feeling of cooperation with my husband in raising our child The existence of an understanding and supportive husband Feeling reassured by being together as a family Making adjustments for my child

Worrying about how we are viewed by society, and Becoming meiwaku (nuisance) to other people. However, there were several concrete expressions of the subbelief of relationships with society that were new additions to the Common Tentative Framework of Japanese Family Beliefs. These included Difficulty in building relationships with parents of healthy children/Feeling isolated, Efforts to maintain relationships by helping people understand the disability, Forging and maintaining relationships in the community, and Being helped by other mothers of disabled children. Mother H, whose son was diagnosed with autistic spectrum disorder, talked about her difficult experience in her relationships with neighboring parents: . . . Well, I thought it wasn’t the thing [my son’s disabilities] to talk about with my friends. Actually, the conversation seemed to become more and more at cross-purposes, you know. For example, my friends said “our sons are at the rebellious age, aren’t they? I’m always irritated by his swear words nowadays”


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. . . but these things didn’t happen to my son. He was really obedient . . . I was different from them . . . my son was also different from other children . . . I felt so isolated. Moreover, I noticed they gossiped about my way of child rearing . . . But I had no words to explain myself. [Difficulty in building relationship with parents of health children/Feeling isolated]

Mothers reported that they made great effort to maintain and build a “new” relationship in their community. As mothers hoped their children could live in their own community with neighbors, they were challenged to lay the foundation for letting people know and understand their child and the child’s disabilities. Mother C talked about an episode when she told the neighbors about her child’s disabilities: When I confessed my son’s disability to the neighbors . . . I also spoke about some painful illness stories at that time, so I might have made them feel a burden . . . but my feeling was really relieved. And, even after hearing my story, they played with my son as before. I was able to feel we were supported. [Efforts to maintain relationships by helping people understand the disability]

As Mother F hoped that her son would go to the same elementary school as the neighbors’ children, she started preparing to expand these new relationships before entering the kindergarten: I wanted to send my son to a local kindergarten and elementary school like the neighboring children. My son has grown up and lives in this community, so I thought I had to let the neighbors know about my son. I had known another kindergarten near the day care center [of the rehabilitation hospital]. It might be comfortable to go there because many children with disabilities at the day care center go there. But it was out of our school district. I thought the neighbors would probably accept my son if the relationship with him started from when he was very young child. [Forging and maintaining relationships in the community]

Most of the mothers had chances to interact with other families of children with disabilities by being involved in social services (e.g., day care center, nursery home, short-stay service) and entering the inpatient early intervention unit at the rehabilitation center. These interactions with other families of children with disabilities helped mothers recognize that they were supported by their peers. The son of Mother G had severe motor and intellectual disabilities, and a respirator assisted him 24 hr a day. Mother G recalled when she and her son were hospitalized in the early intervention program:


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When we were admitted, he was the child with most severe disability in the unit. Of course there was no other child using a respirator. But I felt somehow comfortable because other mothers accepted my child very naturally. They accepted him even his appearance looked very severe. They were very kind . . . these were very good experiences for me. I think this experience affected me a lot. [Being helped by other mothers of disabled children]

Relationships with family members. The analyses revealed seven concrete expressions of the subbelief “relationships with family members.” Mothers reported they had reviewed the family relationships, especially their relationship with their husband, and considered their family in a new way. There were three specific concrete expressions that were new to the Common Tentative Framework of Japanese Family Beliefs: Lowering hopes about other family members, Feeling of cooperation with my husband in raising our child, and Feeling reassured by being together as a family. All mothers recognized the support offered by their family members, especially from father and grandparents of the child. However, mothers sometimes felt conflict about being supported by these family members because they had to accommodate differences in care approaches, for example, the best way to take care of the disabled child. Mother A divorced after her child was born and lived in her parent’s home. She talked about her experience of being helped by her parents (the child’s grandparents): I think it was difficult for grandparents to learn a lot of new things. Both of them are over 60 years old! So if grandparents would help me to some extent, I am satisfied. It’s OK. It’s impossible for them to understand and do everything for my son. [Lowering hopes about other family members]

Mother B reported that the relationship between she and her husband became stronger after they learned about their daughter’s disabilities: . . . about one week before her discharge, my husband and I came to see the doctor to have the consultation for discharge. At that time, we were informed that our child might have a severe condition. The doctor said he could not predict what kind of disability would appear in the future. I wasn’t able to imagine anything. But after we knew it, our relationship became stronger, I think . . . We were united like “Let’s do our best together!” [Feeling of cooperation with my husband in raising our child]

Mother C talked about a story that she heard from her mother. Mother C lived with her extended family, and one or both of her parents were in the house most of the time:


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I was at my parents’ home after my discharge from maternity unit . . . during the time my son was hospitalized in the NICU. I didn’t realize anything but my mother said they [my parents] were really afraid that I would commit suicide at that time. My parents were always watching me . . . Even now, I feel secure when other family members are in the house. [Feeling reassured by being together as a family]

Beliefs About Death and Illness The main belief about death and illness is comprised of five subbeliefs: “Degree of societal acceptance of disability/handicap,” “Degree of own acceptance of disability/handicap,” “Meaning of disability/handicap,” “Attributes of medical/social professionals,” and “Approach to coping with the illness/disability, Approach to facing health decline, death, and grief.” (Table 3 shows the subbeliefs and the concrete expressions of these subbeliefs.) Degree of societal acceptance of disability/handicap. Mothers reported wondering and worrying about the degree of social acceptance their child would experience, as well as what judgment society would have of the disabled child’s mother and family members. The concrete expressions in this subbelief were welcome additions to the Common Tentative Framework of Japanese Family Beliefs. They included My child’s disabilities exceed society’s acceptable range, Grandparents are unable to accept the disability, People never understand invisible disability, and Giving up expecting happiness like a normal child. Even if the family had positive experiences regarding their child’s disabilities, they also experienced that the disabilities of their child were not accepted easily by the societal context in which they lived. In particular, families of children with developmental disorders were distressed by the conflict and discord that were apparent within the societal context of health care and treatment. The child of Mother H reported it had taken a long time for her child to be diagnosed with autistic spectrum disorder. She reported the family had experienced great difficulty until a diagnosis was offered as no one understood her child’s challenges: It was hard days before he was diagnosed. There was no understanding or explanation. He differed in something. He was able to give an answer to my question. That was good. But . . . something was different. I was comfortable to talk with other children, rather than my son. So, I consulted the specialists at the social-welfare centers. I met many specialists and teachers. But some of them didn’t recognize my son’s condition. One specialist said to me, “Well, I


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Table 3. Beliefs About Death and Illness: Subbeliefs and Concrete Expressions. Concrete expressions, that is, how the family belief became visible

Subbelief Degree of societal acceptance of disability/handicap

Degree of own acceptance of disability/handicap

Meaning of disability/handicap

Attributes of medical/social professionals

Approach to coping with illness/ disability, Approach to facing health decline, death, and grief

My child’s disabilities exceed society’s acceptable range Grandparents are unable to accept the disability People never understand invisible disability Giving up pursuing the happiness for a normal child Difficult to accept the disability I cannot imagine the future Different from “normal” child Necessity to expand my range of capacity Adjust/change my attitude toward my child Lowering expectation for my child’s development Making up the cause/responsibility of the disability My child’s disability allows me to grow Fears regarding effects on other family members Reconfirming my child’s disability There are merits and demerits in social support Medical professional and specialists are helpful Having hope for social services Fearing the death of my child Keeping my child alive desperately

think there is nothing wrong with your son. He is really smart and well behaved. . . . I am afraid you are the one with problems”. . . . That was terrible. [My child’s disabilities exceed society’s acceptable range]

The mother also reported, I suppose children with invisible disabilities like my son have great difficulty to live. They are really good children as if there were nothing special. The more efforts a child with invisible disabilities makes, the more their disabilities go unrecognized . . . it’s unreasonable. [People never understand invisible disability]


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The son of Mother E had a chromosomal disease. The mother delivered her son at a maternity clinic near her parents’ home that is called Satogaeri, a traditional Japanese custom that involves a woman’s postpartum homestay with her parents. The mother and her husband were informed of their son’s diagnosis when the mother was discharged from the maternity clinic. The mother expressed her suffering after she was discharged to her parents’ home: It was . . . hopelessness. I was weeping the whole day . . . maybe three days . . . I couldn’t understand what was happening. I delivered my son at Satogaeri, so my son and I were always with my family. But I was unable to tell my parents that my son had a chromosomal disease. I couldn’t tell them about it . . . I was completely depressed in that period. Several days later, my parents finally asked me if there was something wrong with my son. [Grandparents are unable to accept the disability]

Mother F reported that she had suffered from pessimism following the diagnosis of her son’s autism. The doctor of pediatric neurology told me that my son had autism . . . he has autistic tendency. I asked many things: “Is that curable?” “Is he able to speak?” . . . I asked many questions. I also searched about autism on websites. And after that . . . I was depressed. I felt as if our future appeared dark . . . Now, I am not as distressed, but sometimes, I feel like hopeless . . . as everything looks pessimistic, such as “oh, he’ll never be able to get married.” [Giving up pursuing happiness for a normal child]

Degree of my own acceptance of disability/handicap. However, mothers also wondered to themselves about how able they were to adjust to the child’s disability. These concrete expressions also included very specific beliefs that were not previously accounted for in the Common Tentative Framework of Japanese Family Beliefs: Different from “normal” child, Necessity to expand my range of capacity, Adjust/change my attitude toward my child, and Lowering expectation for my child’s development. Mothers reported that these concrete expressions became evident at critical turning points during the family’s life such as being informed the diagnosis of the child and applying to a kindergarten or a school for the child. Mother F had expected that something different might occur to her disabled son compared with his sibling’s development: Until I took him to the regular medical check-up and consultation, I had thought that he had something strange. His growth was clearly behind compared with his elder brother. I suspected he wasn’t normal. I became more and more


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suspicious. At the consultation, the nurse recommended that we to go to pediatric neurologist. [Different from “normal” child]

Mother F took the child to the pediatric neurologist and received the diagnosis of autistic spectrum disorder. She gradually recognized the meaning of her son’s behavior: In my thought, he should be able to do the things that other child do. I was always angry with him. I tried to catch his behavior as the doctor said to me, then I felt I could become calm. I realized that all I could do was rethink everything from the different angle. [Adjust/change my attitude toward my child]

Mother A related her experience during the child’s hospitalization at an early intervention unit. She realized the importance of expanding her way of thinking about disability: When my child was hospitalized at the early intervention unit, I met other children with very severe conditions. Though I had seen those children at the outpatient clinic, I hadn’t interacted with the children with such severe disabilities until then, nor their mothers. That was a very good experience. The children and families inspired me to focus on the good points of my son. I discovered many new things about my son, like “Oh, he can do this! I didn’t know that” . . . [Necessity to expand my range of capacity]

Mother C explained that her family changed their expectations of their son: We don’t care about the normal developmental milestones. We don’t want to be troubled with why he doesn’t walk, or why he doesn’t speak. We just want to feel happy with anything that he can do. [Lowering expectation for my child development]

Meaning of disability/handicap. The concrete expressions of this subbelief were extracted from the expressions in which family put their child’s disability in the context of family daily life. The concrete expressions that were additive to those in the Common Tentative Framework of Japanese Family Beliefs included Making up the cause/responsibility of the disability and My child’s disability allows me to grow. Some mothers mentioned that they were able to “settle the cause of the disability,” which meant mothers held beliefs about the etiology of the child’s disability, despite the information they may have been offered by health care professionals. Mothers frequently explained that they believed they were “the


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cause” of the disability, implicating that the disability occurred during their pregnancy. Mother B expressed, “I feel very sorry for my husband. I made him a father of a child with disability . . . that was caused by my illness.” [Making up the cause/responsibility of the disability] Regardless of whether their child’s disabilities were diagnosed or not, mothers tried to obtain a great deal of information about their child’s disability and shared it not only with family members but also with their friends, relatives, and neighbors. Some of the mothers established an association to advocate for their children and negotiated with the board of education. Although these actions often brought them distress, mothers realized that they were growing up as parents as well as family. Mother F told the following story: I studied a lot. I read medical books, book of child rearing, essays by the mother of an autistic child, websites, and blogs . . . many things, and talked to other mothers about them. My husband sometimes says, “huh . . ., you seem to be overdoing,” but he supports me a lot. The more I studied about my son’s disability, the more I was able to grow as a human. Then, I am finally certain that there is no fault in my son, but in the environment. [My child’s disability allows me to grow]

Beliefs About Role Norms Table 4 shows the subbeliefs and concrete expressions of beliefs about role norms: “Role-related-norms regarding child rearing” and “Norms about family the roles within it.” Mothers renegotiated their roles both as caregiver and as a family member to maintain their daily life. Role-related norms regarding child rearing. Mothers decided to take care of their disabled child and devoted themselves to child rearing. The concrete expressions that extended knowledge within the Common Tentative Framework of Japanese Family Beliefs were Taking responsibility for child rearing, Feeling inferiority as a parent(s), Learning how I carry out my role from other persons, Reconfirming our roles as parents, and Longing for and supporting my child’s social development. Most mothers reported that they believed mothers had to take care of the child with disabilities by themselves. They hesitated to share the child rearing with their husband, grandparents, and other family members. Some mothers were reluctant to accept any advice, even from specialists. For example, Mother C made a firm resolution to carry out her role of mother after her son’s discharge and take full responsibility to care for him alone:


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Sato et al. Table 4. Beliefs About Role Norms: Subbeliefs and Concrete Expressions.


Subbelief Role-related norms regarding child rearing

Norms about family and the roles within it

Taking responsibility for child rearing Learning how I carry out my role from other persons Feeling inferiority as parent(s) Reconfirming our roles as parents Longing for and supporting my child’s social development in the future Raising the child together as a family Making child rearing roles more flexible Moving toward our image of an ideal family Gender roles in child rearing

I thought I should do my best. Because I was the person who was able to be with him most, I should concentrate in taking care of him. I should do it. I thought it was the best for my family. Everything would become OK if I could manage to take care for him. I didn’t accept any advice from family members, even from a PT of the locum tenens. I was not able to leave my child to other persons. [Taking responsibility for child rearing]

However, as she and her son used social services, her stance to child rearing was gradually softened: At the day care center, the way of care was completely different. I was able to observe and learn from the specialists and other mothers. They interacted with my child very well. I became very open to learn from them. [Learning how I carry out my role from other persons]

Some mothers talked about their experience during the time their child was in the NICU. As their child was seriously ill, there was no other option but to entrust their child to medical professionals. Mother G offered how she felt during her son’s hospitalization: “While my child was in the NICU, I had felt as if the hospital staff was raising my child. That thought made me feel inferior as a mother.” [Feeling inferior as parent(s)] Mothers reconsidered what the role of parents was in the process of child rearing. Having uncertainty about their child’s physical and developmental perspective, they were searching for how they could be or what they could do as parents. Mother H offered, “I learned about the disability. I took part in a


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class on parenting practices for children like him. If my child is able to live independently by what I have learned, then that is a parent’s duty.” [Reconfirming our roles as parents] Mother G hoped to give their son an environment to allow him to play with other children, though he needed some medical care including respirator assistance: From the beginning, I wanted him to play with other children. I wished to bring him up with many friends. When I heard he might be able to be discharged with a respirator, which was after a tracheostomy, I had a future view of my child. [Longing for and supporting my child’s social development]

Norms about family and the roles within it. The contents of this subbelief were extracted from the situations in which the family members united to carry out their roles. The concrete expression that was a useful addition to the Common Tentative Framework of Japanese Family Beliefs was Gender roles in child rearing. Mother G’s son needed several kinds of medical care in daily life: respirator management, suction, tube feeding, and so forth. She said, It’s difficult to ask fathers for help, especially, in the medical care. I think it’s the common problem of these families, isn’t it? It is easy to leave these responsibilities to the mother entirely. Husbands/men, can always use their job as an excuse to get out of things. [Gender roles in child rearing]

Beliefs About Self Table 5 shows the subbeliefs and concrete expression of beliefs about self: “Self-assurance” and “Self-concept.” There was another subbelief of “Physical condition” in the Common Tentative Framework of Japanese Family Beliefs; however, this did not appear in this present study. Self-assurance. The concrete expressions that were new to the Common Tentative Framework of Japanese Family Beliefs were Struggle to subside our feelings toward our child and I am capable as a mother. Mother D related a situation where, as parents, she and her husband scolded their disabled son when he showed some problematic behavior: Both my husband and I have understood it’s meaningless. We do know that scolding can have a contrary effect. But . . . you know, since I am also human, I also have feelings. Even though I know it [scolding] is meaningless, and


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Sato et al. Table 5. Beliefs About Self: Subbeliefs and Concrete Expressions.


Subbelief Self-assurance Self-concept

Struggle to subside the feeling toward my child I am a capable as a mother Denying even my own existence Searching my own child rearing Hoping someone will accept my child rearing

understand that it isn’t effective, I cannot stop raising my voice and scolding him. I know that isn’t good. When my husband does the same thing, I want to tell him it has no effect to our son, but . . . he [husband] has his feelings, too. There is no way to release our feelings. [Struggle to subside our feelings toward our child]

All of the mothers reported that they had developed confidence in their child’s care. Mother G reported that she felt pleasure when nursing students came with the visiting nurse: I love telling someone how to take care of my child. Sometimes nursing students come with the visiting nurse. I always explain his condition and how to care for him. I enjoy doing that. I think my son is also enjoying himself. [I am capable as a mother]

Self-concept. The concrete expressions that were added to the Common Tentative Framework of Japanese Family Beliefs were Denying even my own existence, Searching my own child rearing, and Hoping someone will accept my child rearing. Most of mothers reported suffering deep remorse in the early stages of child rearing for having a child with disabilities. In this suffering, the mother denied her own existence and considered the possibility that she would die with her child. [Denying even my own existence] Through taking care of their children at home, the family became confident in managing child rearing and their daily life. Parents carefully considered how they would like to be as parents, and reconfirmed their own child rearing ideas as they cared for their children. [Searching my own child rearing] Meanwhile, mothers desired to be recognized for their child rearing. Mother H said,


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For example, suppose I read a book about autism, but not everything would be useful to my child. I have to pick and choose from the ideas by myself. I’m always feeling my way in the dark. I wish someone would say to me “it’s OK. You’re all right.” [Hoping someone will accept my child rearing]

Discussion This research contributes to further understanding about the beliefs and experiences of mothers who are caring for children with disabilities in Japan. Mothers in this study reported that caring for a child with disabilities requires a high level of caregiving responsibilities assumed primarily by the mother. These caregiving responsibilities are stressful and demanding, and not only can they cause psychological distress but they are also experienced as rewarding and can lead to an increased sense of teamwork within the family as members learn to manage the challenges and joys that having a child with disabilities can bring. In this study, mothers were asked in the narrative interview to reflect on two different times in their experience and offer how they had “changed their thinking.” These findings support results documented in other child disability research that is moving away from a deficit focus to a strengths/resilience orientation (McConnell & Savage, 2015). The findings of this study are also similar to research by Knafl, Deatrick, and Havill (2012) who identified that the contextual influences of social networks, care providers and systems, and resources affect a family’s ability to manage a chronic illness. This study provides evidence for the salience of the Common Tentative Framework of Japanese Family Beliefs that is advancing knowledge by identifying beliefs held by Japanese families across the life cycle about illness. There were several new family beliefs that emerged, which were not previously accounted for in the Common Tentative Framework of Japanese Family Beliefs. The most interesting of these point to the predominant influence of the larger belief systems of Japanese culture and society on the family’s relationships with society. Mothers who were caring for children with disabilities reported feeling ashamed in their neighborhood, worrying about how they were viewed by others, and concerned that they might cause “nuisance” to others. Other beliefs included concern that the child’s disabilities exceeded society’s acceptable range that others, even close family members such as grandparents, had difficulty accepting or understanding the disability. These findings have been reported in other studies that have documented the unfortunate stigma and devaluing of children and adults with disabilities (McConnell & Savage, 2015).


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The IBM emphasizes that it is not the belief itself that is challenging or constraining—It is whether the belief invites illness suffering or diminishes/ softens illness suffering (Wright & Bell, 2009). Mothers in this study were interviewed about their experience of caring for their disabled children over time. Early in their experience of receiving a diagnosis of disability or noticing something unusual or alarming about their child, they reported what seemed like deep despair and illness suffering. These findings were similar to other parents’ experience in a recent study by Feudtner et al. (2015) who also found that having a child who is seriously ill invited parents to reevaluate their beliefs and life priorities and ask themselves, “What is a good parent?” The characteristics of a good parent reported by Feudtner et al. were shared by Japanese mothers in this study and included a focus on the child’s quality of life, advocating for their child with friends, neighbors, care providers, and educational systems, and putting their child’s needs above their own. This study had several limitations. The small convenience sample of mothers in Eastern Japan was adequate for this qualitative study, but the results have limited generalizabilty. Family beliefs were inferred through mothers’ narratives of their experiences of caring for a child with disabilities, and therefore the beliefs of fathers and other family members might not have been adequately reflected. Measures of illness beliefs are beginning to be developed that might be used in future studies with larger samples of families (Kazak et al., 2004). Publications and measures about illness beliefs are archived (http://www.illnessbeliefsmodel.com/publications) for the benefit of researchers and scholars. This study also had several strengths. The qualitative analysis revealed many new “concrete expressions” of individual and family beliefs about the experience of caring for a child with disabilities with the main belief categories being beliefs about relationships, beliefs about death and illness, beliefs about role norms, and beliefs about self. The findings highlight that Japanese mothers often hold a belief that a “good mother” must be the primary and sometimes only caregiver and relinquish or alter her life plans and goals to effectively care for her disabled child. There is important work that nurses and other health care providers with a systemic view of families and illness can do to engage and support families (Smith, Swallow, & Coyne, 2015), particularly over the long term of chronic illness and disability. A growing body of intervention knowledge is focused on prioritizing parent and family collaboration and empowerment in provision of care for all children with disabilities and medical complexity (Berry, Agrawal, Cohen, & Kuo, 2013; Kyzar, Turnbull, Summers, & Gomez, 2012). Wakimizu, Fujioka, Iejima, and Miyamoto (2014) recently examined the effectiveness of a group-based intervention for Japanese families caring for a child with


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developmental disabilities and found a significant intervention effect on the families in reducing behavioral problems in children, improving parenting practices, and enhancing the confidence, particularly of mothers, to care for their disabled child. Aston, Breau, and MacLeod (2014) persuasively argued about the importance of building effective therapeutic relationships that will foster effective collaboration between children with disabilities, their families, and health care providers. Nurses who care for the family of children with disabilities, particularly in discharge coordination and home care transition settings would benefit from learning the family nursing skills of the IBM for distinguishing beliefs and offering relational, family-level interventions to mothers and their families that will soften illness suffering (Wright & Bell, 2009; Wright & Leahey, 2013). Acknowledgments The authors would like to thank the mothers who participated in this study. They also acknowledge the members of the Japanese Family Belief Study Group: Dr. N. Yamamoto-Mitani, Dr. A. Honda, Dr. N. Hohashi, Dr. M. Tsujimura, Dr. M. Marutani, and Dr. N. Katakura for their support of this article.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was partially provided by the Grant-in-Aid for Scientific Research (B) from the Japan Society for the Promotion of Science (JSPS).

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Ministry of Health, Labour and Welfare. (2011). Seikatsu no shidurasa nadoni kansuru chosa [Fact-Finding Survey on Persons Having Difficulty in Daily Life at Home]. Retrieved from http://www.mhlw.go.jp/toukei/list/seikatsu_chousa.html [in Japanese] Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., . . . Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626-e636. doi:10.1542/peds.2004-1689 Robinson, C. A. (1998). Women, families, chronic illness, and nursing interventions: From burden to balance. Journal of Family Nursing, 4, 271-290. doi:10.1177/107484079800400304 Robinson, C. A., & Wright, L. M. (1995). Family nursing interventions: What families say makes a difference. Journal of Family Nursing, 1, 327-345. doi:10.1177/107484079500100306 Rolland, J., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18, 527-538. doi:10.1097/01. mop.0000245354.83454.68 Smith, J., Swallow, V., & Coyne, I. (2015). Involving parents in managing their child’s long-term condition—A concept synthesis of family-centered and partnership-incare. Journal of Pediatric Nursing, 30, 143-159. doi:10.1016/j.pedn.2014.10.014 Swallow, V., Macfayden, A., Santacroce, S., & Lambert, H. (2012). Fathers’ contributions to the management of their child’s long-term medical condition: A narrative review of the literature. Health Expectations, 15, 157-175. doi:10.1111/ j.1369-7625.2011.00674.x Tanaka, M. (2010). Perceptions of children among mothers raising children with severe motor and intellectual disabilities: Mothers’ experiences with how they perceive their children. Journal of St. Luke’s Society for Nursing Research, 14(2), 29-36. Tanigawa, R., & Nakamura, Y. (2009). The relationship between the beliefs of families of children with disabilities and the mothers’ response to the disability (2nd report): Facilitating beliefs and constraining beliefs. Collected Papers from the Japan Society of Nursing (Pediatric Nursing), 39, 260-262. [In Japanese] Vermaes, I., van Susante, A., & van Bakel, H. (2012). Psychosocial functioning of siblings in families of children with chronic health conditions: A meta-analysis. Journal of Pediatric Psychology, 37, 166-184. Wakimizu, R., Fujioka, H., Iejima, A., & Miyamoto, S. (2014). Effectiveness of the group-based Positive Parenting Program with Japanese families raising a child with developmental disabilities: A longitudinal study. Journal of Psychological Abnormalities in Children, 3(1), 113. doi:10.4172/2329-9525.1000113 Wakimizu, R., Fujioka, H., & Yoneyama, A. (2010). Empowerment process for families rearing children with developmental disorders in Japan. Nursing & Health Sciences, 12, 322-328. doi:10.1111/j.1442-2018.2010.00533.x Woodman, A. (2014). Trajectories of stress among parents of children with disabilities: A dyadic analysis. Family Relations, 63, 39-54. doi:10.1111/fare.12049


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Author Biographies Naho Sato, RN, PHN, DNSc, is an associate professor, Division of Child Health Care Nursing, Department of Advanced Practice Nursing, Chiba University Graduate School of Nursing, Japan. Her current research and clinical interests focus on promoting mutual support in parents of children with special needs, coparenting quality in caregivers of children with special needs, and nursing practice for families living in disaster-stricken areas. Her recent publications include, “The Beliefs of Parents of Children With Special Need in Transitioning to Home and Maintaining Daily Living” in Journal of School of Nursing, Chiba University (2010, with I. Ito, A. Araki, & K. Ishigaki); “The Relationship Between Parenting Alliance and Condition of Mutual Support in Parents of Preschool Children With Special Needs” in Journal of Chiba Academy of Nursing Science (2008). Akiko Araki, RN, PHN, DNSc, MBA, is the director of the Department of Nursing at Chiba Rehabilitation Center in Chiba, Japan. Her research and clinical interests focus on nursing of children and families with special needs, promoting mother–child interaction, and softening parenting stress. Her recent publications include, “Development of Tentative Clinical Ladder and Supporting Indicators for Certified Nurse Specialists” in Journal of Graduate School of Nursing (2012, with N. Nakamura, I. Usui, W. Naoko, & N. Matsuda); “The Beliefs of Parents of Children With Special Need in Transitioning to Home and Maintaining Daily Living” in Journal of School of Nursing, Chiba University (2010, with I. Ito, N. Sato, & K. Ishigaki); and “Family Decision-Making of Children With Disabilities: Difficulties, Supports and Expectations for Support in Family and Professionals” in Journal of School of Nursing, Chiba University (2008, with M. Ichihara, M. Konno, N. Sato, E. Nakanishi, & N. Nakamura). Ryuko Ito, RN, PHN, DNSc, is a professor in the Faculty of Health Care and Nursing, Graduate School of Health Care and Nursing, at the Juntendo University, Japan. Her research and clinical interests focus on the nurses’ ethical dilemmas in the care


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management process and moral distress experienced by home-visit nurses. Her recent publications include, “The Beliefs of Parents of Children With Special Need in Transitioning to Home and Maintaining Daily Living” in Journal of School of Nursing, Chiba University (2010, with A. Araki, N. Sato, & K. Ishigaki) and “Moral Distress Experienced by Japanese Nurses: A Meta-Synthesis of Japanese Studies” in Bulletin of Chiba Prefectural University of Health Sciences (2012, with Y. Kawasaki, M. Tsujimura, C. Yoshida, I. Miyuki, Y. Chiba, . . . K. Ishigaki). Kazuko Ishigaki, RN, PHN, PhD, is the president/professor of the Faculty of Nursing, Division of Community Health Nursing, Ishikawa Prefectural Nursing University, Japan. She is serving her third elected term as administrative director of the Japanese Association for Research in Family Nursing (JARFN) and has helped guide this national organization with more than 1,400 members since its inception in 1994: http://square.umin.ac.jp/jarfn/jarfn/. Her research and clinical interests focus on family beliefs, the development of a Theory of Culture–Based Nursing, and the construction of community of health nursing based on community types. Her recent publications include, “Developing an Assessment Tool to Prevent Aspiration Pneumonia in Respiratory Care: Development and Pilot Study of an Assessment Tool” in Japanese Journal of Nursing Art and Science (2013, with J. Fujita) and “Discussion on the Function of Public Center and the Role of Nurses in Korea and Japan” in Ishikawa Journal of Nursing (2013, with H. Tsukada, M. Tsujimura, C. Tsuduki, & K. Kanagawa).


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