Filipino Mothers' Experiences of Chronic Sorrow

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Ywas to describethe chronic sorrow experience of Filipino mothers oj children with a .... stress was more tolerated and the ability to derive positive ... types of coping strategies: (1) action, such as engaging in ... school teacher, until she decided to become a full-time ..... behaviors and tendency to rebel to their level of maturity.
Filipino Mothers' Experiences of Chronic Sorrow Ma. Concepcion C. Cabatan Jennifer Anne J. Danar Jenny Lyn S. Mitra Maria Andrea G. Adriano Crizel Yvette P. Martinez

Keywords: mothering spirituality- emotions

- developmental

disabilities -

Abstract OBJECTIVES: The purpose of this stuc!Y was to describe the chronic sorrow experience of Filipino mothers oj children with a developmentaldisability (DD) and the copingstrategiesthry emplqy. METHOD: The stuc!Y used a qualitative design using the phenomenological approach (Creswel4 2007; Moustakas, 1994). Six (6) mothers of children with DD were interviewed using the Burke/NCRCS Chronic Sorrow Questionnaire Caregiver version. Interviews were audio-taped and transcribed. Themes were drawn from the lived experiencesof the 6 mothers. RESULTS: The mothers describedtheir chronic sorrow experience through 4 themes namelY initial reactions, recurring nature, coping strategiesand looking towards thefuture. Thry experienced recurring emotions of sadness, disappointment, frustration, guilt, anger,pity, fear, depression and hopelessness through trigger events. Coping strategies helped them joumry through the experience that allows them view their child'sfuture with optimism and positivity. . CONCLUSION: Chronic sorrowis a real and genuine experience for the 6 Filipino mothers of children with developmental disabilities. The chronicsorrow experience of the Filipino mothers is describedas a range of emotions brought about initiallY as a reaction upon diagnosis of their children, recurring, and tn"ggered!?y events and other persons. Part of their expen'ence was their discovery of their ability to copeand view the future with renewed strength and ener;gy.Ma'!Y of their experiencesare similar to what is describedin literature. Understanding this phenomenon will enable occupational therapists to recognize and provide support to mothers with developmentaldisabilities.

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Parenting entails providing basic needs, health, education and emotional needs of children. Demands are further increased when one has a child with developmental disability. Developmental disabilities (DD) represent an array of disorders that range in severity. These are characterized by physical and/or psychosocial limitations manifesting in at least three areas of living such as selfcare, mobility, self-directed learning, receptive and expressive language, and capacity for living independently and economic sufficiency (McDonnell, Wilcox, & Hardman, 1991; Yamamoto, 1993). For a disability to be considered developmental in nature, it must already be apparent before an individual turns 22 (Yamamoto). It includes diagnoses like autism, mental retardation, cerebral palsy, learning disabilities, attention deficit disorder, deaf-blind and other communication disorders (Reyes, 1990). Many if not all, will require life-long support and care. Given this classical picture, parents have to deal not only 'With providing basic needs but also with extra care giving specific to the disability. Hospitalization, medicines and therapy programs are just a few things that the family should be able to provide for the child. As lifelong care giving needs have to be fulfilled, family roles, routines, and PQorities undergo ch.an?~s. Families of children with DD often change their pnontles from work and/or socialization to attending to the child's needs. In addition, family dynamics and social relationships are affected with the presence of a child with disabilities in the family (pimm, 1996). The interpretation of disability evolved with the course of history reflecting the cultural and societal beliefs prevalent during a p~rticular time. At the time when there was still limited medical knowledge about DDs, having a child with disability was considered a stigma. Parents report experiencing a multiple range of emotions such as disbelief, shock, guilt, denial, loss, fear, anger, frustration and mourning (Cameron, Snowdon, & Orr, 1992; Fraley, 1986; Kearney & Griffin, 2001). Howev~r, nowadays, a shift towards incorporating ~dapt~tlon and acceptance as part of living with disability IS eVIdent (Ferguson, 2002). Despite the shift in orientation, experiencing the spectra of sadness continues to be a dominating theme among parents of children with DDs. One such phenomenon discussed in literature is known as chronic sorrow (CS). Originally described amonK parents of children with mental retardation, Olshansky (as cited in Eakes, Burke, & Hainsworth, 1998), defined chronic sorrow as a "pervasive and recurrent sadness" (p. 179) that was viewed as a typical response to the loss of something ideal. The loss of something ideal pertains to the loss of having a normal child, along with the hopes and dreams parents have initially set. It differs from grief which is characterized as having an eventual end when resolved and being adjusted to the trigger event or situation (Wittman, Hobbs, & Lee 2001). '

CS was further described to occur in various intensities and duration. It has been widely described in literature to also exist among individuals with chronic conditions, bereaved persons (Burke, Eakes, & Hainsworth, 1999), family caregivers such as those caring for children with sickle cell disease (Northington, 2000) and children born prematurely (Fraley, 1986). Moreover, the chronic sorrow experience between mothers and fathers of children with DD was compared (Mallow & Bechtel, 1999). Initially, mothers blame themselves for their child's condition while fathers fear what the future will be like for the child with DD. This attests to the notion that chronic sorrow transcends populations and situations. Melnyk, Feinstein, Moldenhouer, and Small (2001), described events or stressors that trigger the experience of chronic sorrow. Triggers include initial diagnosis, developmental transitions, on-going health care needs, exacerbations, and hospitalizations. The inability to achieve developmental norms and social expectations was also reported to be a powerful trigger. Northington (2000) classified these triggers as either internal or external. An internal trigger is said to be the incursion of thoughts that has the possibility of occurring such as the child dying. External triggers, on the other hand, include the overall impact of the disease, such as sad news, financial burden, school and public education regarding the disease or disability. Conversely, Kearney and Griffin (2001), reported that although sorrow is prevalent among parents of these children, there is still a positive side to the phenomenon. The experience of CS increased their sense of purpose as evidenced by redirecting their attention to the positive attributes of having a child with DD rather than dwelling on the negative aspects. This included increased family cohesiveness and social networks (Stainton & Besser, 1998). For families with financial and medical resources, stress was more tolerated and the ability to derive positive insight from the experience was strengthened (CaseSmith, 2004; Kearney & Griffin). Children with disabilities were generally viewed as a gift by helping parents become more accepting of their situation. Parents also described how they coped with chronic sorrow. Eakes et al. (1998) described these coping strategies as internal or external. Those that were utilized by the person experiencing CS was considered internal and these included engaging in leisure, seeking information, having support systems, adapting a positive outlook and relying on spiritual beliefs. External management refers to those that are provided by professionals. These include seeking guidance and emotional support from health care professionals. Health professionals who demonstrated caring for the child and showed empathy with caregivers were reported to help persons with CS cope. Furthermore, they described four types of coping strategies: (1) action, such as engaging in

actJvItJes, (2) interpersonal, demonstrated by sharing feelings with others, (3) emotional, which involved working on one's beliefs or reflecting on one's feelings, and (4) cognitive, which involved learning more about their child's condition (Eakes, Burke & Hainsworth, 1994 as cited in Wittman, Hobbs & Lee, 2001). There is very little information on chronic sorrow and how it impacts occupational therapy practice, despite the fact that working with families of children with DD is a major practice area globally and locally. Two articles were found in the occupational therapy literature describing CS (Lee, Strauss, Wittman, Jackson, & Carstens 2001; Wittman et al., 2001). Literature about this phenomenon has been written mostly by Western authors, a good number of which are found in the nursing profession. Moreover, there is very limited information as to whether the experience of chronic sorrow transcends cultures. There is no known study about chronic sOrrow among Filipino families. Placing the child and the family as active participants in the intervention process will advance the occupational therapy thrust to promote client-centered practice (Sumsion, 2006). Considering that occupational therapists work with children with developmental disabilities and their families, the proponents of this study aimed to explore the phenomenon of chronic sorrow among Filipino mothers of children with DD. Understanding chronic sorrow as a recurring experience will help occupational therapists practice the precepts of client centered approach which are respect, shared power, and negotiation (Falardeau & Durand, 2002). Method Design

To examine CS as experienced by Filipino mothers of children with DD, a qualitative design using the phenomenological approach was used (Moustakas, 1994). The phenomenological approach was chosen as this would allow understanding CS from the stories of six mothers. We sought to explore significant descriptions of how Filipino mothers' lived with their past and current experiences of chronic sorrow as a consequence or part of having a child with disability. Participants

Mothers of children diagnosed with DD who regularly received therapy services at a campus-based clinic of a higher education institution in Manila were invited as informants for this stUdy through an announcement posted in the clinic. They were also personally approached by the investigators and given letters of invitation. The letter contained the purpose and significance of the study. It also described the interview process. Six mothers agreed to be interviewed. They were

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requested to sign consent forms. Questions about the study were answered by the investigators. To protect their identities, pseudonyms were used for the mothers and their children (see Table 1). The mothers' . occupation and the children's diagnosis are provided to place their accounts into context and facilitate understanding of CS experiences.

Table 1: Participants' profile Pilar - mother of Miguel. Married, with four children. Miguel- a 7-year old boy with autism and probable mental retardation. He is the youngest child of four and was described to be very hyperactive. Rosa - mother of Raphael. She works as a vendor and laundrywoman. Married and has two children. Raphael - 11 year old boy with cerebral palsy. He is the younger of two children. Rina - mother of Roy. She works as a part-time tutor. Roy - a 15 year old boy with autism. He was diagnosed with autism at three years old. He is currently in grade four SPED class on a private school. Verbal, interactive and jolly. Estrella - mother of Marco. Married and was previously a school teacher, until she decided to become a full-time mother in order to take care of Marco. Marco - a 12-year old boy with Down Syndrome. Diagnosed when he was 3 months old. Aurora - mother of Ilona. She left her work to attend to Ilona's needs. Ilona - a 15 year old girl with cerebral palsy. She receives physical therapy services and attends a money management occupational therapy class in a clinic.

questionnaire were changed to "therapists" and "mothers", respectively. Another form was developed to obtain the demographic proftle of participants. The principal investigator trained the research team on the use of the questionnaire and interview protocol, as well as the recording of interview proceedings, writing of analytic memos, transcribing of interview proceedings, and analyzing of data. Data Collection

The standardized open-ended interview Was used to collect the data (patton, 1990). Using the Filipino caregiver version of the Burke/NCRCS Chronic Sorrow Questionnaire, participants were asked the same set of questions in a specific sequence. Probing questions were asked, when necessary. The principal investigator interviewed the first 2 mothers. Two team members were present during the int~rview to assist in the recording and note-taking. Each interview lasted an average of an hour. The interviews took place privately in a room within the institution. All interviews were done in Filipino as this was the preferred language of the mothers. Interview proceedings were _audio-taped and transcribed. The first 2 mothers were asked to review the transcript of their interviews. They agreed with the content of their transcripts. Two other members of the team conducted two interviews -eR{;h, while the remaining members assisted WIth the r~cording and note-taking. Each team member was assigned to transcribe an individual interview proceeding which was re-checked by the whole team to .ensure consistency and reliability. Member checks were not done with the transcripts of the 4 mothers because the team had already double-checked and deemed them adequate. Data AnalYsis

Instrument

A method of analysis of phenomenological data described by Creswell (2007) and Moustakas (1994) was used. To enhance. rigor, the research team did the analysis individually and as a team. Each member of the team read a transcript at least twice, wrote notes, and formed initial codes that reflected the chronic sorrow experience (horizonalization). The researchers then went on to the second step which was to develop, label, and group statements and test if it contained a "moment of

The primary tool for this study was the Burke/NCRCS Chronic Sorrow Questionnaire Caregiver version. Permission for the use of this tool was granted by the Nursing Consortium for Research on Chronic Sorrow through Burke in August 20, 2004. The questionnaire contains 16 open-ended questions that centers on the CS experience. The English questionnaire was translated to Filipino using the 3 stage translation process r:w odd Health Organization [WHO), 2010). The Filipino version was pilot tested with 2 family caregivers. For this study, the words "nurses" and "caregiver" from the original

experience" (Moustakas, p. 121). Vague and overlapping statements were eliminated. The third step was to identify clusters and themes. From each informant, a textural description (what happened) and structural description (how CS was experienced) were drawn. Meanings and essences of the experiences were then drawn from these descriptions. All transcripts used for data analysis were in the Filipino language. All the members of the research team were well-versed in both languages. The team regularly met to discuss themes, meanings, and essences after the

Carmen - a single parent to Emman who sells fashion accessories for a living. Emman - a 5 year old boy with ADHD and repaired cleft lip and palate. Attends a day care center during weekdays.

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Table 2: Themes Framework Pain Guilt Fear Denial Blaming/confronting Sadness from fathers Physical enriching exhaustion

God HODe, comforted Relatives negative doubtful, reactions; fearful derogatory -able labeling Anger Disappointment Pity Blaming Worrying Frustration Resentment Feelings Releases Thankful, optimism Anxiety Sadness: of God feelings being where appreciative, for being disappointment from not reminded toof siblings ignored being get disappointment, funds happiness by due ofthe the for to to undergo to child's wife medical lack fear, limitations attention medical procedures frustration, ofofother Wittman, Pimm (1996) Hobbs, Lee I)and Day to strength, day care of the Kearney and (2004) Undergoing Normal Husband-wife Siblings events medical relationship where procedures inchild they are reminded having athe Mallow and Bechtel (1999) Eakes, Cronin Burke (2004) and Hainsworth (1998) Fraley (1986) Helitzer, Cunningham-Sabo, Jocano (1998) Griffin (200 Case-Smith (2004) I)(200 Pimm Lee, Vanleit, Strauss, (1996) Crowe Wittman, (2000) Jackson Carstens TriJ!J!erEvents /ofStrateeies and emotions felt I.nitial diagnosis Blacher (as cited inLiterature Burke, Eakes & Orr (1992) Cameron, Snowdon, Hainsworth, Cohen (as cited 1999) inand Melnyk et Gorospe (1988) Uncertainty Wittman et al. (200 I)al.,2001) Case-Smith (2004) Cameron, and Orr Kearney and Northington (2001) (2000) Eakes, Case-Smith et al;. Cameron (2004) (1998) etSnowdon al. (2001) (1992) Ferguson (2002) Alejo (2004) Development ofapathy the child Crying asdue emotional release from physical fatigue and (1992)and Suooortine Themes Pimm tension Mallow and 1999) DeGrace (2004) I) professionals (2001) Wittman, Hobbs and (1998) Leeof(200 Northington (2000) people, Helitzer Stainton(996) lack et and al.Bechtel( of Besser (2000) concern health Family dynamics

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Seeking God by praying Other-people

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initial individual analysis. Field notes were reviewed and this provided a look into the team's views and perceptions of the mothers. The team openly articulated how the personal views of one another influenced data analysis. This process helped resolve disagreements or opposing views. The team agreed on the themes 80 to 90 percent of the time. The significant statements that captured the experience of chronic sorrow were translated into English. Translations were done based on the closest meaning of the statement rather than word for word translation. The team also discussed the English translations to ascertain if the genuine experience of the mothers were accurately captured. Results How Chronic Sorrow was Experienced Despite having unique experiences of chronic sorrow, there was a shared consciousness among the participants. There were specific triggers that made chronic sorrow intensely felt. The mothers felt mixed emotions connected with the experience: sadness, disappointment, anger, frustration, guilt, pain, pity, fear, anxiety, anger, depression and hopelessness. From these emotions, themes were drawn out to describe the chronic sorrow experience, illustrating events that trigger the recurrence of sorrow as well as the coping strategies used (see Table 2).

Initial Reactions Initial diagnosis was the trigger that commenced the journey of living with a child with disability. Upon learning about their child's diagnosis, the mothers experienced a variety of emotions that included sadness, disappointment, pain, and pity. The emotions were associated with the loss of having a normal child. Estrella clearly expressed this in her words:

~~twas veLypainful. All my dreams vanished. It's like the world has faDen upon me. It's like I lost everything. " Guilt was also common. The mothers blamed themselves for what happened to their child. Guilt feelings were evoked when they described past events that somehow made them feel they neglected their child with disability. Pilar vividly recalled feelings of guilt:

~Perhaps it is my fault that you became like that. It was like I was blaming myseJ£ .. I guess I was reaDy not able to take good care of you weU during my pregnancy. But I also thought ... I know I did my best when I was pregnant. All the vitamins were complete. The only problem I had that time was I was over fatigued with work and did not get enough sleep." Also common among the mothers was the belief that a Higher Being was responsible for their situation. As Philippine Journal of Occupational Therapy 2010. Volume 4, Number 1

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a former schoolteacher, Estrella believed her previous actions and attitudes in her line of work affected the development of her son. She also went on to say that this was God's way of getting back at her misdeeds.

~~t first, I was veLy ilJ-tempered ... I then thought that this may have happened because I failed a lot [of students] ... This is my karma from . God." With that, the mothers cannot help but question why God has put them in such a depressing situation. Aurora clearly stated:

~~blamed God. Why did He give me a son like this? I did not do anything bad. I have been a good daughter to Him. I questioned if He is reaDya God, why did He do this to me? It is like a burden I have to carLyas long as I live. " Recurring nature

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The development of the child is also seen as an essential theme to the experience. As the family learns how to go about with the normal flow of life, chronic sorrow. still resurfaces, especially at times when they are reminded of having a child with DD. Such trigger events include undergoing medical procedures, dealing with family members and encountering situations that remind that their child is not like other typically-developing children. Fear and anxiety are heightened by the anticipation and uncertainty of the child's condition. Specific situations highlighting such emotions include undergoing different medical tests which they believe are strong indicators of the child's condition. Pilar described her emotions every time she had to wait for a medical result or when her son had to undergo another medical procedure:

"I feel veryr,veLy depressed [down], like, my God, here we are again. It makes me feel down. It makes'me want to throw a fit on the [Door}just to... make it aU end just like that. I kept wondering about what the best way is to prevent the result. I say, my God, where else did I lack at... " One mother also expressed her frustration over the regression of her son. Such unexpected events bring tremendous exhaustion. Other mothers reported experiencing physical fatigue from the day-to-day care of their child. In Pilar's words:

~~ am already tired from preparing eveLything and after they (other children) (leave)for school I would notice that they left a pile of mess and then [Raphael] would add more by putting down and scattering different things inside the house. It angers me and makes me feel like I want to hurt my son." Coupled with experiencing fear and anxiety is the additional burden of having to worry about where to obtain funds. Expensive medical procedures such as computerized tomography (CT) scans and magnetic

resonance imagery (MRI) add physical and emotional strain. They reported feelings of frustration when medical procedures were difficult to accomplish because of financial constraints. This was voiced out by both Rosa and Carmen:

uThe problem is money; we are not able to do the things that he needs. That is why up to now we have not had the MRI and CT scan done. " (Rosa) uOf course there are questions like, why did this happen to me? Of aDpeople ..., I am not rich, I don't have a job. And then the doctor said that it was going to be a long process. "(Carmen) The chronic sorrow exp~rience also affected the dynamics of the family. Three familial relations were emphasized: husband-wife, siblings and relatives. The mothers felt that having a child with disability have strengthened their relationship with their spouses. As Rosa poignantly shared:

"He's our living doll... He keeps us (couple) intact that if we fight with each other, once he (the son) cries, we forgive each other." Despite feeling the aforementioned positivity, there is also a downside to the experience. The mothers appear to be more resilient in facing the situation than the fathers. They saw their husbands experience denial, as well as retreat to different activities like drinking as a means to cope with their distressing situation. Rina and Aurora related their experiences with their husbands in the following comments:

l'In my husband's point of view, he reaDy has feelings of denial ... At first, he felt like, IThat's not in our genes.' It took time before he accepted it. "(Rina) UHe is always drunk. He drinks because it hurts him when he sees his child like that, crawling, unlike other children who can walk. "(Aurora) Estrella also voiced out how attention to her child with disability has caused her husband to feel ignored and led her to perceive herself as being unable to fulfill her duties as a wife.

UHeis affected because I don't give time for him anymore. My focus is on my child. I'm not able to do my duty as a wife... " Apart from the husbands, their other children also expressed feelings of resentmeat toward the extra attention given to their sibling with a developmental disability. Pilar and Rosa described their complaints and behavior as follows:

UHis older brother [even asked}, tWhy did you ever give birth to him? It has been reaDy diBicult for us' ... " (pilar) lIMy second [adolescent} son leamed to run away from home because of jealousy ... It was like he lacked the needed attention because I was so focused on my other child [with disability]. .. " (Rosa)

Experiences with relatives also affected a mother's perspective of chronic sorrow. The mothers acknowledged the help of other people in various means, (financial or emotional support), but they were not enough as the cost of care for their children was just too much.

uThere came a time when I felt resentment towards my mom because when my son was hospitalized, I had no money and I asked her to look for someone whom we can borrow money from. She was able to borrow fast but when she gave it to me, she said I must return the money immediately ... It hurt my feelings because I thought, this is her grandson ... I came to the point wherein I sulked but later on I came to understand her because she also experienced hardships with us and we can't even help her ... " (Rosa) The mothers also attributed other people's attitude towards disability to their lack of education about the condition. They felt that if only these people could understand the situation, it would be easier for them to cope with the daily challenges. Instead, they would hear absurd ideas and rude comments from their relatives. This was highlighted in Pilar and Aurora's statements.

lIMy brother-in-law who is from the province suggested, 'iust release him [son} there, that's ok, he's like that'. I said, that cannot be done ... (Neither) my parents (n)or my siblings (can) understand our situation. I don't know. I'm puzzled They are educated but why, I said, why don't they know?" (pilar) uThe situation became harder for me because we live with my husband's relatives. If they could only understand [the situation), it would be easier ... I've accepted it, the diBiculties I experience with Ilona are easier but the fact that they cannot accept it is even harder because I sti11hear a lot of rude things ... " (Aurora) Feelings of disappointment were also felt when they perceive other people to be apathetic to their situation. The other people include neighbors and public workers whom they encounter on a daily basis. Again, it is the lack of knowledge with the condition that makes them react that way, as stated by Pilar and Estrella.

UThey don't understand when I tell them my child has autism. I was hurt because they [neighbor} are insulting us. They even said we're labnonnal'. They don't know what autism is. " (pilar) uThe people around us... His uncles, aunts ... they know that he is like that [with autism} ... the other people in the environment ... you cannot please everybody ... I don't mind te11ing other people that my son has a disability ... but the way they look at him, it's like he's the only one different ... some even take a second look. "(Estrella)

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In addition, the mothers discussed their relationship with health professionals. Chronic sorrow was experienced as disappointment recurs every time they perceived a lack of concern from health professionals. Rosa somehow finds this from student therapists, especially those who really aren't passionate about the profession. She spoke of frustration regarding the way student therapists handle her child:

"Here in the therapy clinic, the new [student therapists] of course there are some who have their own [choice of profession], though sometimes they apply for college courses that is against their will, so they're not very [concerned] with their patients." Sadness recurs when the mothers are reminded of their child's limitations. The feeling of losing the longed-for normal child is again felt. They expressed feelings of pain and envy at times when they see their other children develop and grow. Estrella explained:

"Wben I see other children, I feel pain. My child is supposed to be in grade 5, but right now he is only in the kindergarten level. " It was during these events that they cannot help but confront God again. Rosa was emotional when she said:

"If only God had just made him walk. It is not like I can carry him every time. What if I cannot anymore? It is not like he is my only son too. At one point I wondered what if, for example, I tell God to just get him from me if there really is no hope. " They continue to question God about why they were given a child with disability. Pilar related:

~'I'm blinded by anger. I was shaking because I was blaming God. I say my God! Wbat is this that you have given me?" This statement depicts the strong influence of God in the lives of these mothers.

Coping Strategies Despite the experience, the mothers were able to discover different ways of dealing with chronic sorrow. These coping strategies included crying, doing anything possible, preparing self for the long process of therapy, thinking positively, keeping self busy and asking strength and guidance from God. For them, crying brought about emotional release from the physical fatigue and tension derived from pooled emotions that included disappointment, fear, frustration, pain, guilt, pity and hopelessness. Pilar highlighted this:

~'Ijust cry a lot. Wben I'm aU alone, I cry. After the crying, I would ask myself ~why wi11I lose hope?'" Keeping busy was another strategy that helped them cope. Rosa reported immersing in her work as a laundrywoman. This diverted her attention from issues related to caring for her child.

~'Attimes I just concentrate on my work. " Philippine Journal of Occupational Therapy 2010. Volume 4, Number 1

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The mothers also described coping by getting as mach information about her child's condition. Being part of a group that supports their child's condition helped them deal with the disability. Attending seminars and therapy sessions were reported to be helpful. In addition, giving support to other parents of children with disability also helped. Pilar related:

('I am always prepared... If the doctor said there wi11be a scheduled meeting on this day or if there is a seminar on this topic...I'll go. AU of it... I even attend therapy in XXX (another hospital where child receives therapy) ... " The support of other people such as therapists and doctors and non-government agencies were also perceived as helpful in the coping process. They found strength in people who demonstrated simple acts of kindness like spending time explaining their children's condition, giving schedules and appointments and finding benefactors for medical procedures. Rosa expressed her appreciation by saying:

"One of the things I feel thankful for is that they gave us a convenient once-a-week schedule wherein all [the services] are received [in just one day]." Pilar's experIence also depicts appreciation towards other people. She welcomes any positive and sympathetic reactions toward her child as evident in her statements:

~~en I see other sympathetic towards you, even happy. I would tell that to my happy when they care for me. times like that. "

people who are for just a bit, I feel neighbors. I am so I would even cry at

Despite situations in which they cannot help but question why God placed them in such a state, it was found out that they also sought strength from Him. Praying to Him served as a form of release. They felt comforted when they are able to pour their emotions to a Higher Being. For them, praying somehow helped them regain strength and restore hope in their life. As Pilar expressed the value of praying:

"My feelings somehow get uplifted. It's like I am teUing God that whatever my son is going through right now is up to Him. My feelings get really uplifted when I leave everything to God." Looking towards the future For these mothers the future of their child remains uncertain. It has been described to be full of fears and doubts. They have resigned themselves to the fact that living with a child with disability is going to be a life-long process; that there will come a time when they cannot take care of their child any longer. These mothers voiced their concerns regarding this scenario. They do not have the answer as to what the future may bring; only

questions conveying fears, doubts and hopes for the child, as Pilar stated:

UIt's not like I can take care of him all the time. W'hatif I can't take care of him anymore?" Despite the sorrow experienced, these mothers viewed living with a child with DD positively. They find the experience inspiring. One mother (Rina) even pointed out that good support systems help her find more clarity with her son's future. She explained that the sorrow is not as intense as it used to be because she feels optimistic about her son's future:

UItgradually lessens because right now I see a veL)'"bright future for Roy. He is veL)'"welcome here in the school where he attends, and if that is the case, that you reel the [treatment} for your son is [good} you are uplifted, you are inspired to help him too. " Eventually, they become adjusted to the fact that chronic sorrow is something that they have to live with on a daily basis. It may take a while for them to fully understand their situation but the fact that they are in on the journey, thriving and learning from the experience makes it all worthwhile. Estrella and Pilar summed this up in their words:

&&]"t's a repetitive process, like a recorder; you have to go over it again and again before you get to understand. It might take years to achieve. "(Estrella) say, Wy God, I can get by with it eveL)'" day'... Tomorrow is going to be a new challenge again. But in the moming, I always pray that his condition gets better, things like that... Then I muse, Lord, I hope at night he falls asleep well."(pilar) &&]"

In summary, these mothers experienced different emotions depicting chronic sorrow in the context of various triggers encountered daily. The sorrow commenced at initial diagnosis and continues with the day-to-day care for the child. They placed a strong emphasis on their values and belief systems. They noted that family dynamics, faith in a Higher Being, encounters with health professionals and other persons playa role in their experience of chronic sorrow. Moreover, the experience of chronic sorrow defined their relationship with God and their own spirituality. A Higher Being was depicted as the sounding board for their problems; as someone they could blame for their situation, or question during times of heightened sorrow and sought solace from during times of need. As they journeyed through the experience, they have been able to utilize various coping strategies, thus making their lives bearable and make their journey more meaningful. The chronic process was seen to recur at various points in their life. Ultimately, they have learned how to adjust and let the sorrow come and go. They are still able to view their children as gifts. Their stories communicate that having a child with disability has enriched and

deepened their understanding of disabilities, of people, their faith in God, and life in general.

Discussion The study examined the chronic sorrow experience of six Filipino mothers of children with a developmental disability. They described the emotions and events associated with the recurring phenomenon as well as how they coped with chronic sorrow. They found common grounds as well as unique points of view on the different aspects of the experience. Although their socioeconomic status showed small variations (low- to middle-income range) and have come from diverse backgrounds in terms of their child's diagnosis, the consistency of their responses generated meaningful themes that shaped the chronic sorrow experience. These themes shared similarities and differences with·the experiences of mothers in the studies of Cameron et al., (1992), Wittman et al., (2001) and Melnyk et aI., (2001). The triggers that elicit chronic sorrow such as initial diagnosis and daily care for the child described in this study were consistent with the findings of Melnyk et al. (2001). Moreover, the description of internal (emotions felt) and external events (situations related to the experience such as initial diagnosis, medical procedures and day-to-day care for the child) provided by Northington (2000) were very evident in the mothers' experience. The mothers described feelings of pity, fear, disappointment, depression and hopelessness brought about by the day-to-day care for the child. During the child's development, the mothers reported that sorrow is continuously felt. This recurring nature of chronic sorrow was also described in studies by Eakes et al., (1998) and Cameron et al. (1992). Upon initial diagnosis, the perceived loss of a normal child brings an array of emotions from shock, disappointment, depression, fear, pity and guilt. The emotional experience of chronic sorrow for these mothers supports the findings of Lee et al., (2001), Kearney and Griffin (2001), Cohen (as cited in Melnyk et al., 2001) and Blacher (as cited in Burke et aI., 1999). Guilt was evident as they blamed themselves for the child's condition. The act of reflecting back and thinking about events prior to birth which may have caused the disability was consistent with the studies of Mallow and Bechtel (1999), Pimm (1996) and Fraley (1986). In those studies, the mothers expressed that they should have showed more concern for their child and their selves during the course of pregnancy. Mothers' chronic sorrow was also triggered when they were' anticipating results of medical tests. They sensed fear and anxiety every tim~ they are awaiting the results of medical tests. In addition, exacerbation of their child's condition added to their ongoing train of Philippine Journal of Occupational Therapy 2010. Volume 4, Number 1 ED

emotions. Frustration and depression were also felt and this supports the studies of Fraley (1986) and Helitzer, Cunningham-Sabo, VanLeit, and Crowe (2002) in which such an event resulted in similar emotions. Fraley also described another emotion unique to her own findings which is helplessness. This helplessness was experienced when the child was sick, about to go a medical procedure or when another medical problem was encountered. Although helplessness was not a finding of this study, the trigger events were similar to the aforementioned events. Physical fatigue brought by the day-to-day care of the child with disability also evokes feelings of frustration and anger directed towards the child. Pimm (1~6) and Cronin (2004) supported this finding of physical exhaustion as a trigger. The rigorous care-giving process also affects health and well-being. For Filipino caregivers of children with cerebral palsy, the sogaJ. and psychological domains were reported to be the most affected as measured through the WHOQOL-Bref (Rotor, 2006). Another noteworthy finding that emerged from this study was the impact of financial difficulties on the chronic sorrow experience. This is consistent with the works of Mallow and Bechtel (1999), Northington (2000), Case-Smith (2004) and K.earney and Griffin (2001). Such a situation often leads to feelings of frustration. The mothers' desire to provide for the needs of their children is frustrated when they realize they lack the necessary funds. Most often, the result is being unable to carry out a medical procedure that will help the child. This situation reflects the state of the Philippine health care system where the majority of services require out-of-pocket expenses. There are government hospitals that may have programs for indigent patients but most tests will still require payment of fees. In contrast, the mothers in Cronin's (2004) study felt more supported in their ordeal despite financial constraints as they received medical benefits as part of the government health care system. Family dynamics was also found to be a strong influence on the chronic sorrow experience among mothers. DeGrace (2004) reported that the lives of families living with a member with autism revolved around the disability. Moreover, the relationship between husband and wife were -seen to be affected. There were differences in the way both parents dealt with the disability. Most of the time, it was the mothers who were proactive, who tried to keep everything together, whereas the fathers tended to silently pour out their sadness in ways like drinking alcohol. Wittman et al. (2001) also reported drinking as an outlet or way of coping for the fathers. Attitudes and behaviors of other siblings were also found to contribute to the recurrence of chronic sorrow. The mothers were aware of the neglect of their other children because of the extra attention given to the sibling with disability. Their other children expressed

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resentment over the excessive attention given to the sibling with disability. This resentment towards the sibling with disability, especially those in adolescence, add to the mother's experience of chronic sorrow. Josselson, Greenberger, and McConochie (as cited in Steinberg, Belsky & Meyer, 1991) attributed siblings' negative behaviors and tendency to rebel to their level of maturity This was also documented by Ferguson (2002) and Pimm (1996). However, Jocano (1998) argued that in the Filipino culture, siblings tend to look out for each other in times of need. It appears that the presence of a disability in a family affects sibling relationship. The age of siblings may be a factor suggesting the need to further explore how the presence of disability affects sibling relationship. Filipinos place great value on kinship. The extended family is expected to help during tough times. They are expected to show care and concern and addition provide financial aid.4When these expectations were not met, distress often occurred Gocano, 1998). The relatives of the mothers in this study failed to meet these expectations. The mothers perceived lack of concern and support from their relatives and this made the experience of chronic sorrow more intense. This situation was also observed in the studies of Cameron et al. (1992) and Pimm (1996) in which other family members or relatives were found to be not supportive at all. There was the stigma of having a relative with disability. The mothers also pointed out that the lack of education about the condition contributes to this unsupportive attitude. This supports Ferguson's (2002) assertion that the cultural and societal upbringing of a person affects how hel she interprets disability. Such statement also holds true for people in the community. The mothers related that other people's negative comments and derogatory labeling caused feelings of anger. Cameron et al. (1992) found that labeling triggered anger among mothers. Pimm (1986) echoed this as he reported that the manner of acceptance within a society is through physical means and to be incapacitated is considered a stigma. Unique to the present study and of importance to occupational therapy clinicians, is the fact that the mothers pointed out that even therapists are not helpful at times. They felt these therapists' lack of passion towards the profession contributed to a lack of genuine concern for their child. This implies how emotionally vulnerable these mothers are and strongly suggests a need to emphasize among health professionals the need to pay extra attention to their interactions and communication with patients and their families. In addition, comparing children with disability with typically developing children triggered feelings of frustration and disappointment and is consistent with the findings of Cronin (2004), Eakes et al. (1998), Wittman et al. (2001) and Cameron et al. (1992). Comparing the child

with disability makes the mothers feel that they have missed important milestones in the child's life. Aside from triggers, ways of coping were also seen as a significant theme in the experience of chronic sorrow. Coping strategies which were voiced out by the mothers in the study are similar to the studies done by Wittman et al. (2001), Northington (2000), Helitzer et al. (2000), Eakes et al. (1998) and Case-Smith (2004). Coping strategies are either action-based or emotional. Actionbased strategies include pouring their attention to their jobs, educating themselves about the condition and attending therapy sessions. For these mothers, even the simple act of participating in therapy sessions brought relief because it made them feel that they were doing what was best for their child. On the other hand, emotional coping strategies, which included crying, seeking support from others and praying, brought emotional release and enabled them to feel better. All these coping strategies suggest that these mothers were able to perform their roles and daily occupations. Despite the aforementioned finding in which most of the mothers described how they were not able to rely on their husbands during sorrowful times, one mother (Rosa) talked about how a strong husband-wife relationship helped in coping with chronic sorrow. This finding is consistent with Stainton and Besser's (1998) assertion that a child's disability can contribute to increased family cohesiveness and social networks. One hallmark of this study is the strong influence of a Higher Being. Although Wittman, et al. (2001) and Stainton and Besser (1998) stated that there is increased spiri~ality among parents of children with DD, the Filipino experience presented two facets. Religion comprises a major part of the Filipino culture. The people tend to attribute major events in their life, good or bad, to the workings of God. Unique to this study was the aspect of blaming God for misfortunes such as having a child with DD. The mothers expressed that at some point, they felt that God was to blame for their child's condition. Yet, it is also from God that they ask for guidance and strength in times of need. Religious orientation played a role in coping (Bennett & DeLuca, 1996; Wittman, et al., 2001). Similarly, prayer was reported to be a way of coping with CS for the mothers. This may be related to the aforementioned religious upbringing of Filipinos. This is true of the Filipino philosophy that amidst the hardships in life, all hope relies on their religious orientations (Gorospe, 1988). For the mothers, the uncertainty of the future highlights the experience of sorrow. They recalled feelings of fear of not being able to support their child's needs and thoughts that their children will not acquire the skills necessary for everyday living. Similar findings were reported by Wittman et al. (2001) and Kearney and Griffin (2001). In those studies, parents experienced fear for their children's future specifically of their apparent

incapability to live independently. Despite this, they maintained realistic attitudes with fewer expectations from their children and are able to view their children as gifts from God (Bennett & DeLuca, 1996). The essence of these mothers' experience of chronic sorrow is a discovery of their humanness and renewed strength and energy to continue living. Similarly, Bennett and DeLuca (1996), Kearney and Griffin (2001), Northington (2000), Case-Smith (2004) and Cameron et al. (1992) showed how the mothers are strengthened by the experience. Chronic sorrow, in part, brings about weakness but at the same time, it generates some form of renewed energy. Alejo (2004) explained this through his discourse on popular spirituality as cultural energy. He argued that it is cultural energy that enables people "to endure pain to sustain existence" (p. 51). He further asserted that this energy allows ordinary persons to use inner resources to affirm themselves. He called this "power to wil¥' (p.51). This may account mothers' astounding courage to go on.

for these

Implications for Occupational Therapy Practice, Education, and Research This study provides occupational therapists important knowledge of Filipino mothers' experience of chronic sorrow. It appears that occupational therapists playa vital role in the mothers' experience. Occupational therapists, especially those who work with families of children with developmental disabilities, will benefit from a better understanding of the recurring nature of the emotions related to chronic sorrow. Therapists can be instrumental in helping them cope with their CS experience by simple acts of acknowledging their feelings, providing emotional support, giving information, showing respect, taking into consideration their needs and resources. These are essential components of a client-centered practice. Occupational therapists need to be aware that they could also potentially contribute to the chronic sorrow experience of these mothers in the way they deal and relate with their children. Occupational therapists are known to use their "selves" as a therapeutic tool. The manner of approaching, relating and dealing with clients strongly impacts therapy outcomes (Falardeau & Durand, 2002). Filipino patients and their families value therapists who show care through respect, listening, and who spend time explaining the therapy process to them (Chiang & De Leon, 1997). Findings of this study strongly support the need to strengthen interpersonal, communication and clientcentered approaches in occupational therapy educational programs. The phenomenon of chronic sorrow among mothers of children with disability, especially its recurring nature, needs to be emphasized. Students may need to be taught how to recognize chronic sorrow and respond appropriately.

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Future research can include more mothers and fathers from different educational and socioeconomic backgrounds using a survey design. The need to explore the spiritual aspect of chronic sorrow is also put forth by the study. In addition, the impact of chronic sorrow on occupational performance of parents may also be studied. Limitations

The extent to which this study can be generalized is limited considering that we only had 6 motherparticipants, and did not include the perspective of fathers and other significant family members (siblings and relatives). The Filipino language was used for all interviews. Significant statements were translated into the English language. There are many Filipino words that do not have corresponding English words. In addition, the mothers' emotions that were strongly expressed in the Filipino language did not appear as vivid when translated into English. Furthermore, the investigators' feelings and values may have influenced in the interpretation of the meaning of the mothers' experiences. There were some instances when the investigators felt the need to offer support to the mothers especially during emotional outbursts. Also, some assurance was given that the mothers' complaints related to the services of the clinic will be communicated to the appropriate authorities. Conclusion The chronic sorrow experience of the six Filipino mothers is described as an array of recurring emotions initially encountered upon being told of their children's diagnosis, and triggered by events and other persons. Another important aspect of the experience was their ability to cope that allowed these mothers to look towards the future and have renewed strength and energy to live their life with optimism. An essential aspect of the Filipino mothers' chronic sorrow experience is their belief in a Higher Being as source of their ability to live their lives. Many of their experiences are similar to what is described in the literature. Although chronic sorrow is central to the daily lives of these mothers, their children provide the strength that drives them to be more accepting of disabilities and of life.

Acknowledgment We are deeply grateful to Mr. R. Lyle Duque who gave constructive comments and suggestions to improve our research proposal and to the mothers who willingly shared their experiences which made our exploration of chronic sorrow very meaningful.

References: Alejo, A.E. (2004). Popular spirituality as cultural energy.

In Lecture Series 3 on spirituality: Context and expressions of Filipino spirituality (pp. 32 - 52). Quezon City, Philippines: Center for Spirituality-Manila. Bennett, T. & DeLuca, D.A (1996). Families of children with disabilities: Positive adaptation across the life cycle. Social Work in Education, 18, 31 - 44. Burke, M.L., Eakes, G.G., & Hainsworth, M.A. (1999). Milestones of chronic sorrow: Perspective of chronically ill and bereaved persons and family caregivers. Journal ofFami!J Nursing, 5, 374-387. Cameron, S.J., Snowdon, A, & Orr, R.R. (1992). Emotions experienced by mothers of children with developmental disabilities. Children's Health Care, 21, 96-102. Case- Smith, J. (2004). Parenting a child with a chronic medical condition. American Journal of Occupational Therapy, 58, 551-560. Chiang, N.S., & De Leon, e.G. (1997). Qualities of a caring occupational therapist

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Unpublished undergraduate thesis, University of the Philippines Manila. Creswell, J.W. (2007). Qualitative inquiry and researchdesign: Choosing among 5 approaches. Thousand Oaks, CA: SAGE Publications. Cronin, AF. (2004). Mothering a child with hidden impairments. American Journal of Occupational Therapy, 58,83-91. DeGrace, B.W. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, 543-550. Eakes, G.G., Burke, M.L., & Hainsworth, M.A (1998). Middle-Range theory of chronic sorrow. Journal of Nursing Scholarship, 30, 179-184.

Falardeau, M. & Durand, M.J. (2002). Negotiationcentred versus client-centred: Which approach should be used? Canadian Journal of Occupational Therapy, 69, 135 -142. Ferguson, P. M. (2002). A place in the family: A historical interpretation of research on parental reactions to having a child with disability. Journal of Special Education, 36, 124-131. Fraley, AM. (1986). Chronic sorrow in parents of premature children. Children's Health Care, 15, 114118. Gorospe, V.R. (1988). Filipino values revisited. Quezon City, Philippines: Kalayaan Press. Helitzer, D.L., Cunningham-Sabo, L.D., VanLeit, B. & Crowe, T.K. (2002). Perceived changes in self-image and coping strategies of mothers of children with disabilities. Occupational Therapy Journal of Research. 22, 25-33. jocano, F.L. (1998). Filipino social organization. Quezon City, Philippines: Punlad Research House ..

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Kearney. P. M., & Gdffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal of Advanced Nursing, 34, 582-592. Lee, A. 1., Strauss, L., Wittman, P., Jackson, B., & Carstens, A. (2001). The effects of chronic illness on roles and emotions of caregivers. Occupational Therapy in Health Care, 14,47-61. McDonnell, J., Wilcox, B., & Hardman, M. (1991). Secondary programs for students with disabilities. Boston: Allyn and Bacon.

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Mallow, G.E., & Bechtel, G.A. (1999). Chronic sorrow: The experience of parents with children w~o ate developmentally disabled. Journal of P!)IchologictJl Nursing & Mental Health Services, 37, 31-35. . Melnyk, B. M., Feinstein, N. F., Moldenhouer, Z., & Small, L. (2001). Coping in parents of children who are chronically ill: Strategies for assessment and intervention. Pediatn'cNursing, 27,547-557. Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage Publications. Northington, L. (2000). Chronic sorrow in caregivers of school age children with sickle cell disease: A grounded theory approach. Issues in Comprehensive Pediatric Nursing, 23, 141- 154. Patton, M.Q. (1990). Qualitative evaluation and research Park, CA: Sage methods (2nd ed.). Newbury Publications. Pimm, P.L. (1996). Some of the implications of caring for a child or adult with cerebral palsy. Bn·tish Journal of Occupational Therapy, 59, 335-340. Reyes, A.L. (1990). Developmental disorders: A practical approach. Journal of Pediatrics, Obstetrics and Gynecology, (Supplement), 15-19. Rotor, E.R. (2006). Quality of life of caregivers with cerebral palsy. Philippine Journal of Occupational Therapy, 2,26 - 35. Stainton, T., &_Besser, H. (199S). The positive impact of children with an intellectual disability on the family. Journal of Intellectual & Developmental Disability, 23, 5670. Steinberg, L., Belsky, J., & Meyer, R. B. (1991). Social and emotional development in adolescence. Infanry, childhood & adolescence.NY: McGraw- Hill, Inc. Sumsion, T. (2006). Client-centered pradice in occupational therapy:A guide to implementation (2nd edition). Toronto: Elsevier Yamamoto, M.S. (1993). Developmental disabilities. In R.A. Hansen & B. Atchison (Eds.). Conditions in occupational therapy: Effict on occupationalpeiformance (pp.

53-81). Baltimore: Williams & Wilkins. Wittman, P., Hobbs, A. c., & Lee, A. L. (2001). Helping parents cope with chronic sorrow. Occupational Therapy Practice, 6, 12-14.

MA.CONCEPCION

C. CABATAN,MHPEd, OTRP

Dean and Professor of Occupational Therapy College of AlliedMedical Professions University of the Philippines Manila P. Faura St., Ermita, Manila Philippines 10PO [email protected]

JENNIFER ANNE J. DANAR,OTRP* Staff Occupational Therapist Therabilities, Inc. Unit 2006 Tycoon Centre, Pearl Drive, Ortigas Center Pasig City, Philippines

JENNY LYN S.-MITRA,OTRP* Staff Occupational Therapist The Able Center 9055 Banuyo Street, San Antonio Village Makati City, Philippines

MARIA ANDREA G. ADRIANO,OTRP* Staff Occupational Therapist Therabilities, Inc.Unit 2006 Tycoon Centre, Pearl Drive, Ortigas Center Pasig City, Philippines

CRIZEL YVETTE P. MARTINEZ,OTRP* Staff Occupational Therapist Therabilities, Inc. Unit 2006 Tycoon Centre, Pearl Drive, Ortigas Center Pasig City, Philippines *Their initial participation in the researchproject was inpartial fulfillment of their requirementsfor the Bachelor of Sciencein Occupational Therapy degree. Thereqfter, thry continuedto take part in the data analYsis and writing of the manuscript.

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