Stress In Women Caring For Dependent Relatives: Multiple Case Studies

 M.Sc. Haydee Otero Martínez

ABSTRACT: The present study aims at describing stress in women who care for dependent relatives. A qualitative research methodology was used in multiple case studies. An informal approach was employed and the individuals gave their informed consent. Data was obtained from interviews, over three in-depth, and from non-participant observation. Triangulation and Content Analysis were the two strategies used to analyze the data. Fifteen women were studied. Three of them were caring for their very mentally retarded children, 7 cared for sick relatives, while the other 5 were looking after aged family members. Results of the study include a description of the women in general and of the subgroups of those who take care of old, sick and disabled relatives. Explanations are given regarding the causes of stress in the care taker women which can be used for direct intervention and as hypotheses for further studies.

Keywords: WOMEN, GENDER, STRESS, CARE, RELATIVES

LITERATURE REVIEW AND PROBLEM POSING:

Only two men were found as caretakers of 26 patients with terminal chronic renal insufficiency in a study about stress in primary care for relatives, Otero H . (1) Lack of recognition for women caretakers was part of their stress. Men received more recognition and more instrumental social support. Navarro y Beyebach, (2) argue that patient care is undertaken by wives, daughters, daughters-in-law, or sisters, and the lowest percentage of women involved is approximately 70%.

Thus, the present paper poses the following problem: What kinds of stress do women caring for a dependent relative suffer?

OBJECTIVE:

To describe stress in women who take care of a dependent relative.

METHODOLOGY:

Multiple Case Study

A qualitative research methodology was applied. It was designed as a multiple case study, in which several unique cases are used at the same time.

Case Study

“ It is a profound, intense and rich descriptive analysis of an instance, phenomenon or simple social unit. It is based on inductive reasoning. Generalizations, concepts or hypothesis arise from thorough data examination.” Rodríguez, G (3).

Case selection criteria included studying women caring for dependent relatives. They were not paid for their care and their only interest was protecting those they took care of. Another selection criteria was field access feasibility.

Field Access

Access was informal. The interviewer knew the interviewees or was introduced by someone they knew. Informed consent was given and all of the women involved were visited in their own homes.

The study lasted two months. The interviews were repeated every two weeks and observations were made by trained and guided psychology students.

Data Collection and Entry Strategies

The main technique used was over three in-depth interviews without a previous guideline of the topics to be dealt with. The interviews evolved from the interviewees themselves and were further developed in successive sessions. Non-participant observation complemented the interviews. The narrative system was used to conduct a natural exploring of events (in the environment) related to our theoretical framework of stress. In this kind of observation, the events are noted without a structure, coming out of the theoretical framework, the objectives and the problem posed. All field notes were recorded.

Data Analysis Strategy

A Content Analysis of the in-depth interviews and the observations was carried out. Another strategy employed was Triangulation: a qualitative method which is used to contrast techniques, data, sources, methods, moments and subjects to obtain different interpretations which are confronted to complement, support or confirm information.

Field Abandonment

The interviews were not ended abruptly. The interviewees appreciated the opportunity to talk about these topics.

Cases Studied

Fifteen women were studied. Each of them became the object of a unique case study. Here is a brief description of them.

a - Women in charge of family members with serious mental retardation:

Two mothers take care of their respective children suffering from Down's Syndrome: a 16-year-old girl and a 17-year-old boy. The third mother takes care of a son of 38 who suffered brain damage during birth.

b - Women in charge of aged relatives:

Five women aged from 40 to 62 take care of older relatives from 82 to 92. Two of the older relatives suffer from the Alzheimer Syndrome, and one of these two is crippled as a result of an accident. The 92 year old woman is not demented but her physical and mental capacity has greatly diminished . One of the interviewees in the study takes care of two 88-year-old women, one of which suffers from Senile Dementia.

c - Women in charge of sick relatives:

There are 7 women taking care of sick relatives, all between 42 and 59 years of age. Their relatives suffer from the following problems: A 77-year-old woman crippled in an accident is looked after by her daughter. A 53-year-old husband has a brain trauma which caused physical and mental disability. A 26-year-old son is schizophrenic since childhood. A 14-year-old son suffers from a brain tumor and congenital suprarenal hypoplasia, with physical and mental damage. A 52-year-old husband has terminal pancreas cancer. A 48-year-old husband has lung cancer. A 68-year-old diabetic mother has had complete amputation of one leg and partial amputation of the other.

Occupation: Ten housewives, 1 working medium-level technician, 1 who is retired, and 3 university graduates: 1 engineer, 1 journalist, and 1 professor.

Operational Definitions and Theoretical Model Used

Dependent individuals are those who need other people’s care to be able to maintain their vital functions.

Dionisio Zaldivar’s (4) definition of stress is used in this paper:

“Stress is a sustained unpleasant living state which is accompanied by greater or lesser psycho-physiological disorders, which arise in an individual as a result of the change of his relationship with the environment. The subject feels objectively or subjectively threatened by requests or demands over which he has, or believes he has, little or no control.”

Lazarus’ (5) classification of Styles to Confront stress is also used, in reference to emotion-centered and problem-centered confrontations.

DATA ANALYSIS:

Analysis Of The Interviews And Observations Of The Caretakers In The Mental Retardation Sub-Group

The categories and frequencies resulting from the interviews are the following:

• Doubts about having more children after the retarded one was born: 3
• Pride over their child’s progress: 2
• Shame for their child’s limitations: 1
• Presence of family cooperation: 1
• Under psychiatric treatment, nervous disorder: 2
• Sleep disorders, few hours of sleep, sudden awakening with fear: 3
• Having a job out of the home makes her feel fulfilled: 1
• She does not allow other relatives to care for the child, because no one can do it better than she can: 2
• She likes to be informed about her child’s disease: 2
• Tiredness, fatigue: 3

One of the mothers in this subgroup attends a group of parents with children with Down's Syndrome. She works as a middle-level technician and allows her husband and her other son to take responsibility for several duties at home, thus she has some free time for herself. Far from being ashamed of her daughter, she is happy to see her progress and has fostered her independence. She has gone to psychologists and other specialists in search of information. Her daughter attends psycho-ballet lessons, takes part is some games and performs very simple activities. This mother enjoys going out, her family and personal life.

Another woman who takes care of her 17-year-old son with Down's Syndrome explains that: “In fact, the few times I went out with my son and only when it was necessary, I realized other people did not accept him. I think that has made me isolate myself…Everything my son does upsets me, and mistreating each other has become a habit…I have a hard time accepting reality. My other children sometimes say I am bitter.” She and her husband barely communicate with each other.

Analysis Of The Interviews And Observations Of The Caretakers In The Old Relatives Sub-Group

Among the categories that resulted from the interviews are:

• She has no idea how much longer the situation will go on for: 4
• She feels guilty to be thinking about the aged relative’s death: 4
• She keeps on demanding more responsible behavior from the aged relative, showing lack of knowledge of Alzheimer and Senile Dementia: 4
• Not enough hours of sleep: 5
• The foolishness of the old relative is unbearable, and he/she has bad behavior and whims: 4
• She loses her temper easily, and is irritable. She has a tendency to get upset and argue: 4
• She feels pity for the person under her care: 4
• She has had to stop working: 1
• She cannot dedicate enough time to her job: 3
• She has no time for her spouse and other family members: 3
• Her spouse complains of her lack of care for him: 3

Women who take care of old relatives feel sad. Exhaustion is predominant. Some of them suffer because of the change in the cognitive capability of their old relatives.

One of the caretakers told us: “She’s my mother and I love her very much, but she is foolish sometimes. I think it’s arteriosclerosis... she wants me to sit down and write letters with poems that she dictates to me and send them to a radio station. She fusses. How can I not lose my temper?”

The woman in charge of the two 88-year-old women told us: “My mother suffers from Senile Dementia, and the two of them are fully dependent on my care. This sometimes takes hours of sleep from me. This situation makes me suffer. On one hand, I don’t have the heart to leave them or ignore this situation. But on the other, I have only one life and I am almost 50. I have many professional and personal projects that call for an amount of time I don’t have now.” Fernández Castillo et al. (6) argue that the time devoted to taking care of relatives with Senile Dementia ranges between 10 and 12 hours a day. During an observation, we heard the caretaker’s mother offending the aunt. She then hit the other elderly women with something she had in her hands.

Another caretaker wishes that “my life could go back to the way it was, after all this is over.”

These caretakers are irritable. They suffer from chronic exhaustion and feel that they never have enough time. They are woken up very late at night by their elderly relatives who call for their attention or who are just wandering about the house.

Analysis Of The Interviews And Observations Of The Caretakers In The Sick Relatives Sub-Group

The following categories resulted from the interviews and observations:

• Resentment against a family member who doesn’t help: 3
• Reluctance to accept the disease, “I don’t agree,” etc.: 2
• Exhaustion: 6
• Hiding diagnosis and prognosis, pretending, keeping silence: 3
• Not enough sleep: 7
• Uneasiness, fear that her relative might die: 5
• I feel nobody else can take better care of him/her: 5
• She has given up her personal aspirations: 3
• The caretaker suffers from a nervous breakdown: 1
• Not enough time: 5
• Lack of recreation: 2
• Depression and frequent crying: 3
• Lack of self care and care of own health: 4

These women’s sleep is characterized by sudden fearful awakenings. They are afraid of the possibility that the sick person might die. This becomes a source of stress.

Overall description of stress:

There are a number of common traits in all of these women:

• Great irritability
• Feeling that they are becoming stupid, they are becoming less intelligent, and are less informed.
• Sleep disorders and not enough hours of sleep.
• Uncertainty at the face of death, risks, or future prospects of the relative under their care.
• There are no breaks or truces.
• This is their place and duty. Nobody else can do it like they can.
• Giving up their personal projects, aspirations and motivations.
• Careless about their physical appearance.
• Careless about their own health.
• Decrease in their self-esteem.
• Chronic tiredness.
• Inability to relax.
• Lack or considerable decrease of recreational or pleasurable activities, including sex.
• The conviction that other close relatives like children and husbands do not think about her.

Some of the elements identified in this paper have been named as the Caretaker’s Syndrome: Lara, L (7), no author (8), (9).

In those women who showed more satisfaction:

Better control of stress was related to:

• Not taking up all the work and control of the situation at home by herself. Decentralizing responsibility.
• Confronting the situation by focusing on how to solve the problem rather than avoiding it.
• Keeping a paid job they felt happy with, improved personal fulfillment.
• Seeking information about the health problem of their family member.
• Finding help.
• Accepting their situation and role, as well as their relative’s limitations. This increased their satisfaction much more than by rejecting, denying or trying to antagonize.
• Keeping functional family relationships at home.
• Being part of large families, as compared with women who live only with their handicapped relative or very small families.
• Allowing time and recreation for themselves, and not feeling guilty for it

These factors could explain the intensity or moderation of their stress, and can be taken advantage of for future studies and to help these women.

There is a positive side in taking care of others:

Except for one caretaker who said her life was meaningless, all of the others found themselves useful and were able to evaluate their own capabilities and personal growth.

López Martínez, (10) highlights the caretaker’s benefits: personal growth, purpose in life, autonomy, control over the environment, positive relationships with others, and self-acceptance.

All of these favorable elements for the caretaker’s personal growth could be reinforced through orientation and psychotherapy.

A female stress:

Despite the fact that the cases for this research were chosen on the basis of the kind of dependent person, there was always a woman in the role of caretaker. In several countries, the highest percentage of caretakers are women. Otero, (1); Navaro, J. and M. Beyebach (2) .

Society gives more recognition to male caretakers, in addition to instrumental social support. This is the reason why they may be under less stress. Otero (1). On the other hand, men appear to ask for assistance more than women. Pino Roca (11) argues that men seek outside help much more easily.

The women in our study are generally not aware that they exclude their husbands and other family members. They do not share the responsibility, and though they claim help from the family, they do not give up their leading role as caretakers. Most of them believe they are the only ones who do the job well. Only the mother of the teenage girl with Down's Syndrome would allow autonomous participation from her husband. Of all the cases, she showed the highest degree of satisfaction.

CONCLUSIONS:

• There are a number of common features that describe caretakers’ stress.
• There are some differences in the characteristics of stress in relation with the kind of dependence of the person under care.
• It is possible to find cause-effect relationships between caretakers’ stress and the characteristics of those who show higher satisfaction.
• Caring for others is not just stressing, its also has positive aspects.
• Most caretakers undertake responsibility and do not give up their leadership.  

RECOMMENDATIONS:

• Establish community action so the primary health care system and social workers can meet the need for information these women may have about caring for their relatives. This should also include assistance given by specialists, information about community resources and material support for these women.
• Foster participation in self-help groups.
• Use elements in psychotherapy that favor satisfaction of the caretakers, as well as the data resulting from this study, to intervene in case work.

REFERENCES:

1. Otero Martínez, Haydée. “El Estrés del Cuidador Primario Familiar de Pacientes conInsuficiencia Renal Crónica Terminal”. Tesis de Maestría en Psicología Clínica. Facultad de Psicología, Universidad de la Habana, 2000.
2. Navarro Góngora, J. y M. Beyebach. Avances en Terapia Familiar Sistémica. “Terapiacon Enfermos Físicos Crónicos”. Ediciones Paidós, Barcelona, 1995.
3. Rodríguez Gómez Gregorio, Javier Gil Flores, Eduardo García Jiménez. Metodología de laInvestigación Cualitativa. Editorial Aljibe, S.L.España,1999.
4. Zaldívar Pérez, Dionisio. Conocimiento y Dominio del Estrés. Editorial Científico-Técnica. Ciudad de la Habana, Cuba, 1996.
5. Lazarus, Richard y S. Folkman, “Estrés y Procesos Cognitivos”. Editorial Martínez Roca. Barcelona, España, 1986.
6. Fernández-Castillo, Rafael, Amate F, de la Rosa, M. Necesidades Asistenciales de losF amiliares de Pacientes con Demencia Senil. http: personal.telefónica.terra.es/web/enfermería avanzada/home/htm
7. Lara Pérez, Leydis, M. Díaz, E. Herrera y P. Silvera. Síndrome del Cuidador en unaPoblación Atendida por Equipo Multidisciplinario en Atención Geriátrica. Revista Cubana de Enfermería. 2001:17 (2):107.11.
8. Cuidar al que Cuida . Síndrome del Cuidador. http: andarrat.frec.índice.htm
9. El síndrome del cuidador . www.consumer.es/web/es/actualidad/salud-y-seguridad/38919jsp.74k
10. López Martínez, Javier. Universidad Complutense de Madrid, Facultad de Psicología. Efectos Positivos de un Estresor Crónico: El Cuidado de Enfermos con Demencia. Sitio www.psiquiatría.es.com/congreso
11. Pino Roca, M. La Sobrecarga del Cuidador. www.medicaterragona.es/aula/neuropsicología/la-sobrecarga-del- cuidador.htm

The Author

Haydee Otero Martínez is a Psychology Professor at the Medical University of Havana and the School of Psychology of the University of Havana; otade@infomed.sld.cu