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Abstract

The primary objective of this investigation was to determine the relationship between family supportand perceived quality of life of patients with retinoblastoma after having being diagnosed and treatedfor retinoblastoma. It is intended to find out whether family support varies in terms of certain client and

family-related characteristics such as his/her age, gender, civil status, work status, educationalattainment, personal and combined family income, type of family and stage of retinoblastoma. Thisstudy also determined the clients perception of the adequacy of different types of family support theyreceived and their extent of satisfaction with their quality of life. The study further determined therelationship between the adequacy of family support received by retinoblastoma patients and theirextent of satisfaction with their quality of life.

The investigation revealed that the retinoblastoma clients were on the average 7.7 years old; mostlyfemale; married; had gone to college, and were not gainfully working at the time of the study.Moreover, most of them belonged to the lower income level; and were still living with their nuclearfamily. Most of them were diagnosed with Stage 2 retinoblastoma. Their primary caregivers were mostlycollege-educated and the combined incomes of their family were relatively low.

Introduction:

Retinoblastoma poses a number of real threats, first of all the fear of death, or prolonged suffering, andbody mutilation. Despite efforts to stress hope and emphasize successful treatment results, manypeople still regard the diagnosis of retinoblastoma as a death sentence. Associated with this fear, is thefear of disfigurement or loss of control of bodily functions. The diagnosis of retinoblastoma, whether the

first time or for recurrence, threatens every patients sense of well being. The priority of retinoblastoma treatment is to preserve the life of the child, then to preserve vision, andthen to minimize complications or side effects of treatment. The exact course of treatment will dependon the individual case and will be decided by the ophthalmologist in discussion with the pediatriconcologist. Children with involvement of both eyes at diagnosis usually require multimodality therapy(chemotherapy, local therapies). Since the retinoblastoma gene is found in all cell types, studying themolecular mechanism of tumor suppression by retinoblastoma will give insight into the progression ofmany types of cancer, not just retinoblastoma.

Family ties tend to be used for life-threatening emergencies and distressing situations such as when a

member is diagnosed with retinoblastoma. One reason for this is the cultural understanding of theobligations of family relations they are supposed to help. Another reason is the dense ties among familyand kins make it easy for them to mobilize and coordinate their efforts.

Support groups are formed to help meet these needs. Some support groups are designed just for thefamily members of people with retinoblastoma. The supportive network may also provide secure andsafe environment for the disabled person to consider.

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Objectives of the study:

This study was conducted to determine the relationship between family support received by clients withretinoblastoma and the quality of their remaining life in the different communities of Iloilo.

Specifically, this study attempted to:

1) Describe certain characteristics of the retinoblastoma client in terms of his/her age, gender, civilstatus, work status, income, educational attainment and the stage of retinoblastoma;

2) Describe certain characteristics of the clients family in terms of the family income, family type,and educational attainment of the primary family caregiver;

3) Determine the types and degree of adequacy of family support received by the retinoblastomaclients.

4) Determine the extent of satisfaction with the perceived quality of life of retinoblastoma clients

in terms of their functional status, social functioning and psychological well-being;5) Determine whether the types of family support received by the retinoblastoma clients vary in

terms of their family income, family type and educational attainment of the caregiver;6) Determine whether the types of family support received by the retinoblastoma clients vary in

terms of their age, gender, civil status, work status, income, educational attainment and stage ofretinoblastoma;

7) Determine the relationship between the degree of adequacy of the types of family supportreceived by the retinoblastoma clients and their perceived quality of life in terms of theirfunctional status, social functioning and psychological well-being.

Theoretical and Conceptual Framework

The Adaptation Model of Nursing is an approach that centers on person who is having difficulty copingwith changes in their lives. This model of nursing, developed by Sister Callista Roy was used as thetheoretical foundation of this study. Roy describes adaptation as a process involving holistic functioningto affect health positively and that according to her, man is a holistic adaptive system who is in constantinteraction with the changing environment. As such, he is continually exposed to stressors with which hemust cope with in order to maintain his own integrity. Adaptation level is a constantly changing pointwh ich represents the persons ability to cope with the changing environment in a positive manner, as it

sets up a zone or range within which stimulation will lead to adaptive responses.

Applying the theoretical assertions of Roy in this study, the researcher will describe how the client withretinoblastoma goes through the process of adaptation to the diagnosis of retinoblastoma while being inthe midst of a supportive family system.

A retinoblastoma client as an adaptive system interacts with their immediate environment, which istheir family who can provide them with adequate family support. When they continuously have a

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