|Year : 2020 | Volume
| Issue : 1 | Page : 27-31
Community-Based Care of HIV/AIDS-Affected Family in India Using the Behavioural System Model
Greeda Alexander1, Mary Narayan2, Vathsala Sadan1
1 Professor, College of Nursing, CMC, Vellore, Tamil Nadu, India
2 Home Health Clinical Nurse Specialist, Narayan Associates, Vienna VA; College of Health and Human Services, George Mason University, Fairfax Virginia, Virginia, USA
|Date of Submission||14-Nov-2019|
|Date of Decision||06-May-2020|
|Date of Acceptance||07-May-2020|
|Date of Web Publication||14-Sep-2020|
Prof. Greeda Alexander
Department of Community Health Nursing, College of Nursing, Christian Medical College, Vellore, Tamil Nadu
Source of Support: None, Conflict of Interest: None
HIV/AIDS infection is a major public health problem in India. Indian community health nurses assume a major role in the care of people with HIV/AIDS. This article provides a brief overview of the HIV problem in India. It illustrates how a partnership between an Indian community health nursing department in a college of nursing and the community they serve addresses the community's HIV/AIDs care needs. Using a case study of a husband and wife, both infected with AIDS, the article follows how community health nursing staff, faculty and students effectively used the Johnson's Behavioral System Model to assess the couple's needs and develop a care plan that allowed this couple to meet their mental and physical health needs over a 10-year period within the community. The four concepts of the nursing metaparadigm with relevance to the Johnson's Behavioral System Model are also discussed.
Keywords: Community-based care, community health nurse, HIV/AIDS, Johnson's Behavioural System Model
|How to cite this article:|
Alexander G, Narayan M, Sadan V. Community-Based Care of HIV/AIDS-Affected Family in India Using the Behavioural System Model. Indian J Cont Nsg Edn 2020;21:27-31
|How to cite this URL:|
Alexander G, Narayan M, Sadan V. Community-Based Care of HIV/AIDS-Affected Family in India Using the Behavioural System Model. Indian J Cont Nsg Edn [serial online] 2020 [cited 2020 Oct 23];21:27-31. Available from: https://www.ijcne.org/text.asp?2020/21/1/27/295039
| Introduction|| |
The HIV/AIDS pandemic has had a devastating effect in many countries because it was first identified in the 1980s. Globally, an estimated 37.9 million people were living with HIV in 2018. HIV is now a chronic illness because of increased access to life-saving antiretroviral therapy. Recent years has seen promising development in global efforts to address the AIDS epidemic, including prevention programs and increased access to effective treatment. New HIV infections are declining globally, with only 1.7 million new HIV infections in 2018, showing decline in the number of new infections from 3.4 million in 2001. At the same time, the number of AIDS deaths has declined with 770,000 AIDS deaths in 2018, down from 2.3 million in 2005.
| Hiv/aids in India|| |
The prevalence of HIV/AIDS varies considerably by country and by region. India hosts the second largest population of HIV-infected people in the world, after South Africa and Nigeria. It is estimated that 21.40 lakh people live with HIV in India in 2017. According to India's National Family Health Survey-III (2008), HIV prevalence is generally higher among urban than rural populations. However, in some Indian states, such as Punjab, Uttar Pradesh and Tamil Nadu (where the case study takes place), HIV prevalence among rural populations was higher than that of urban populations. In addition, HIV prevalence was higher among women whose spouses are employed in the transport industry and among unprotected commercial sex workers. According to a recent report from the government's National Aids Control Organization 2017, Mizoram had the highest adult prevalence of HIV and Tamil Nadu had the point prevalence matching the national prevalence (0.22%, 0.14–0.31). In Tamil Nadu, the HIV prevalence among adults (15–49 years) remains higher in rural when compared to urban areas according to a study reported in 2015.
Addressing the needs of people living with HIV/AIDS is a major public health concern in India. HIV/AIDS has enormous social and economic consequences, especially in high-prevalence countries like India, which extend beyond its impact on morbidity and mortality. HIV/AIDS affects family cohesion, business, trade, labour, education systems, public services and even national security. Many HIV-infected people face considerable stigma and discrimination from friends, family and society. They are often denied access to healthcare, and live in silence and shame.
| Integration of Community Health Nursing Services and Education in India|| |
Indian community health nurses (CHNs) are in a unique position to assist people living with HIV/AIDS. For instance, the College of Nursing's Community Health (CONCH) programme at Christian Medical College actively provides health services to urban and rural areas around the city of Vellore in the state of Tamil Nadu located in South India. The programme integrates nursing education and service. Nursing faculty have joint appointments, working simultaneously to meet the area's community health needs while developing nursing students' knowledge and skills through field practice and supervision in the community. Faculty takes responsibility for the nursing education and also serve as supervisors, guiding nursing services in the community. They assess health needs, provide counselling and assist people manage their problems. Thus, CONCH faculty function as teachers, supervisors, direct care providers, community organisers, counsellors, health educators and in other capacities as dictated by the community's health needs. The programme runs a rural community health programme which covers a population of 63,200 in 21 rural villages. The programme also runs regular services such as home visits, maternal and child health clinics, morbidity clinics, school health and mother programmes. The CONCH programme prepares CHN baccalaureate and masters nursing students to provide community and home-based services to antenatal and postnatal mothers, infants, children and geriatric patients. They also provide home visiting services to patients with acute and chronic illnesses such as diabetes, hypertension, cancer, cardiovascular diseases, HIV/AIDS and respiratory infections. The primary author of this article, a community health nursing faculty, cared for the couple in the case study while she was guiding master's level students in a clinical practicum of counselling people living with HIV/AIDS. The details of the family's situation and care have been camouflaged to protect their identities.
| Case Presentation|| |
The J family, consisting of Mr and Mrs J, their then 2-year-old son and Mr J's parents, lived together in a rural village in Tamil Nadu. They lived in close proximity to Mr J's three brothers and their families. Mr J, who had a 10th grade education, was 28 years old and worked as a truck driver. Mrs J had attended school until 9th grade and was 22 years old. She cared for her young child, addressed household duties and attended to the family's garden plot, which supplemented the family's food sources. Her arranged marriage occurred when she was 18 years old. She was pregnant with her second child.
During the intranatal period, routine blood work indicated that she was HIV positive, although she had no symptoms. This news left her feeling emotionally traumatised, yet she did not confide her HIV status to her husband, family or friends. On delivery, the baby was found to be HIV negative.
CONCH nurses, faculty and students provided post-natal and HIV status monitoring home visits to Mrs J. She told the CHNs that she wanted no one to know that she was HIV positive. She did not want to tell her husband and confided that their marriage was not a happy one, with frequent disagreements and disharmony between them. She reported that Mr J smoked, drank excessively, had friends who were a bad influence upon him, frequently did not come home when expected and that she suspected he frequented commercial sex workers. She said that now that they had two children, she and Mr J had mutually agreed not to have any sexual relationship to avoid having more children.
Over time, Mrs J often cautioned the CHNs not to reveal the purpose of her visits – follow-up on her HIV status – to anyone in her family. She told the CHNs that her family should believe the nursing visits were for family health assessment visits. She said her family members do not discuss issues of sex; do not want to know whether or not they are HIV positive and that everyone in the village is afraid to talk with family, friends and neighbours about their illnesses. Mrs J said that she often felt helpless as she had no one to talk to about her fears or concerns about her illness but she tried to be cheerful and happy as much as possible to give her children a happy life. The CHNs concluded that Mrs J suffered from depression and anxiety related to the isolation she felt with her diagnosis and her worries about how the disease would progress.
Meanwhile, while maintaining Mrs J's confidentiality, the CHNs encouraged Mr J, as they encouraged all sexually active villagers, to be tested for HIV. However, Mr J procrastinated doing so. One year later, Mr J reported to the CHN that he had developed a productive cough, breathlessness and oral ulcers. The CHN used this opportunity to motivate Mr J to visit the hospital clinic to determine the cause and the appropriate treatment for his condition. She provided him with a referral, which also included lab work. He was found to be HIV positive and, in addition, he was diagnosed with disseminated tuberculosis, for which he was started on Category I anti-tuberculosis treatment as per the Direct Observation Treatment Short Course regimen.
During the next couple of years, Mr J. required treatment or hospitalisation for several opportunistic infections, including pneumonia, oral candidiasis, genital warts, candida and mollescum contagiosum. About 1½ years after the initial symptoms, Mr J's CD4 count fell to 107/mm 3, and he was diagnosed with AIDS. He was started on antiretroviral therapy (ART) with zidovudine, lamivudine and nevirapine. Since then, he has been on a regular treatment protocol with only two or three mild episodes of opportunistic infections.
Mrs J was followed regularly to monitor her HIV status, and was asymptomatic for several years. Subsequently, she lost about 10 kg (22 pounds) and complained of fatigue. Her CD4 count was 333/mm 3, and she was started on ART with zidovudine, lamivudine and nevirapine. She developed drug reactions to nevirapine, and the drug regimen was changed.
Both Mr and Mrs J were anxious about their health status. Both feared rejection and abandonment by their families and stigma and discrimination by the village society. Both worried about how they would manage long-term adherence to ART treatment and were distressed by ART's side effects. They were deeply concerned about how they could meet the social and financial needs of their children and larger family. The CHNs used the Johnson's Behavioral System Model to address these issues.
| Behavioural System Model|| |
Dorothy E. Johnson (1919–1999), a nursing professor at the University of California, Los Angeles, developed her Behavioral System Model for nursing [Figure 1] from a philosophical perspective 'supported by a rich, sound, and rapidly expanding body of empirical and theoretical knowledge.' In this model, the goal of an individual is to maintain mental and physical homeostasis, that is, a level of balance with the internal (within the person's body and mind) and external environmental stimuli that can threaten homeostasis. Johnson believed that each individual has patterned, purposeful, repetitive ways of acting that comprise a behavioural system that each individual uses to maintain or achieve homeostasis. Thus, the individual's behaviours form an 'organised and integrated functional unit that determines and limits the interaction between the person and his environment and establishes the relationship of the person to the objects, events and situations in his environment.' The nurse's role is to help the individual develop the protective, nourishing and stimulating behaviours, which will help the patient achieve the balance (homeostasis) needed for mental and physical health.
In order to view and understand the activities individuals use to maintain homeostasis and achieve the optimal level of health possible for the individual, Johnson categorised patients' behavioural systems into the following seven subsystems: attachment and affiliation, dependency, ingestion, elimination, sexuality, aggression and achievement. To maintain homeostasis in each of these subsystems, the individual must perform three activities: (1) protect themselves from harmful environmental influences (such as beliefs, people, settings and substances that can damage health); (2) nurture themselves by selecting appropriate environmental inputs (such as a healthy diet and monogamous sexual relationships) and (3) stimulate growth to prevent stagnation (such as cultivating supportive relationships and meeting changing needs with new behaviours). When these functional requirements (protecting, nurturing and stimulating) are met for each of an individual's subsystems (attachment and affiliation, dependency, ingestion, elimination, sexuality, aggression and achievement), the individual achieves a self-maintaining and self-perpetuating state of health.
An imbalance in any of the behavioural subsystems results in disequilibrium, and it is therefore the health professional's role to assist the individual return to a state of equilibrium. Thus, when needed, the nurse must protect the client from harmful influences, nurture the client through appropriate input from the environment and stimulate the patient's growth and continuing development for each of the patient's seven behavioural subsystems [Figure 1]. When internal or external stimuli threaten clients' equilibrium of any of their behavioural subsystems, the healthcare professional can assist the individual regain equilibrium by helping the client cope with and adapt to these stressors and noxious stimuli in ways that promote health.
| Theory Application|| |
To facilitate the care required by this couple, the author applied the Behavioral System Model, enabling all student and staff to organise the assessment, planning, implementation and evaluation interventions provided to the couple over the 10-year period in which this case study takes place. The model was effective in helping CHNs objectively describe the clients' behaviours and in guiding nursing actions, thereby increasing client and nurse satisfaction with care. The model was especially helpful to the graduate nursing students, enabling them to identify and help address multiple stressors and maladaptive behaviours and then to use the model's protecting–nurturing–stimulating care techniques to help the couple achieve health-promoting behaviours.
The first behavioural subsystem, attachment and affiliation, is the first set of behaviours an individual develops. The optimal functioning of this subsystem allows 'social inclusion, intimacy and the formation and maintenance of a strong social bond'. Initial assessment findings for Mrs J's attachment and affiliation subsystem included marital discord and emotional estrangement. Of particular concern was the high risk of being stigmatised, ostracised and discriminated against due to her family's and villagers' fear of HIV infection.
The CHNs provided protective and nourishing interventions by encouraging Mrs J to verbalise her fears and emotions. They encouraged her to find meaning and purpose in her life by meeting her children's needs and by developing her spirituality, which stimulated adaptive affiliation and attachment behaviours. After Mr J was diagnosed with HIV and tuberculosis, he began placing more emphasis on his family responsibilities, and the relationship between husband and wife improved. Yet, both of them feared that their extended families would not be supportive if they became aware of their health status, and this perceived lack of support left them both feeling emotionally isolated. The psychological support that Mrs J sought and received from the CHNs enabled her to regain her emotional equilibrium, which in turn helped her be more supportive to her husband and their relationship.
The second behavioural subsystem, dependency,includes 'succouring behaviours that precipitate nurturing behaviours from other individuals in the environment'. These behaviours help the individual obtain approval, attention, recognition and physical assistance as needed from others and to maintain environmental resources as needed. The couple were dependent on the CHNs to protect and support their physical health, by identifying health needs, making appropriate referrals, facilitating the medical regimen to prevent opportunistic infections and control their HIV infection through ART medications. Mrs J was also dependent on the CHNs for psycho-social support and on her husband to support her and her children. In facing the sobering realities of his diagnosis, Mr J. recognised his importance to his family and his responsibilities towards them. He changed many of his maladaptive behaviours and provided more attention to his wife and children to meet their dependency needs.
The third subsystem, sexuality, reflects behaviours related to procreation, gratification, attraction and gender role expectations to care for, and to be cared for by others. During the assessment of the sexual subsystem, Mr J confided that he had unprotected exposures to commercial sex workers. Later, however, recognising the danger of such behaviour to himself and others, he stopped this behaviour. Although initially, the couple avoided sexual intercourse to prevent additional pregnancies, with counselling from the CHNs, the couple began using barrier methods, and started considering sterilisation.
The fourth subsystem, aggression, includes behaviours related to protection and self-preservation. The goal of the aggression behaviours is to protect oneself or others from threatening persons, objects or ideas through assertive and protective behaviours. Both of them felt a need to protect themselves from the stigma of HIV by hiding their HIV status from family and neighbours. They continued to protect their own health by regularly participating in the treatment protocol, while concealing the reason for visiting the hospital and rural health centre from their families. The CHNs have been careful to honour their wishes.
The fifth subsystem, ingestion, includes behaviours related to food and fluid intake, including types and patterns of food and fluid intake and the social environment in which food and fluid are ingested. It also includes behaviours related to obtaining pleasure or gratification from non-nutritive substances such as tobacco or alcohol. The goal of the ingestive subsystem behaviours is to take in needed resources from the environment to maintain the integrity of the person and to promote pleasure.
The CHNs reviewed the family's food intake, and instructed Mrs J in food choices, especially foods she could grow in her family's garden plot. Mrs J was highly motivated to prepare a nutritious diet for the family. With the health teaching and counselling that Mr J received from the CHNs, he gradually became convinced that his tobacco and alcohol intake were increasing his risk of opportunistic infections. When he started ART, he committed to abstinence from alcohol. Eventually, he also stopped smoking.
The elimination subsystem includes behaviours related to excreting wastes from the body using socially acceptable behaviours, such as the sanitary latrine that the J family maintained. The goal is to expel biological wastes so as to maintain the equilibrium of the individual's internal environment.
The seventh subsystem, achievement, uses intellectual, physical, creative, mechanical and social behaviours to control and master self and the environment. It includes behaviours that help the individual accomplish goals and achieve success. With the support of the CHNs, Mr J achieved control over his high-risk behaviours. Mrs J felt that she was meeting her goal of keeping the family together, while enabling her children to develop normally, physically and emotionally. They both are able to meet the demands of their illness, with the guidance of the CHNs, by following the medical regimen. They are also able to fulfil their roles as a couple, parents and village members. Although they continue to fear ostracism from their family and their village should their HIV status be discovered, so far they have been able to conceal their status and the CHNs have scrupulously protected their confidentiality.
| Adaptation at 10-Year Mark|| |
At 10 years of the partnership with the family, Mr and Mrs J's HIV infection was well controlled with ART medications. The partnership enabled the couple to rise above their challenges and perform their regular tasks [Figure 2]. Mr J's CD4 count was 543/mm and Mrs J's was 448/mm and, at present, they are free from opportunistic infections. They both adhere to the treatment prescribed for them and consistently attend their follow-up appointments. They practice health-promoting behaviours, such as maintaining a nutritious diet and consult with the CHNs about ways to adapt to physical and psychosocial stressors that occur in their lives. Mr J continues his work as a truck driver which provides a good income for the family, and seems to have 'turned his life around', having successfully adapted to his HIV status by avoiding high-risk behaviours and practicing health-promoting behaviours. Mrs J has developed self-esteem and an optimistic spiritual approach to life, which enables her to cope successfully with the typical challenges of family and village life. She goes about her day centred on her family's welfare and the children's education and development.
| Conclusion|| |
This case study demonstrates how CHNs can change the trajectory of HIV in clients' lives. Having a unifying model of nursing – the Behavioral System Model – promoted continuity of care and provided a framework for addressing the couple's many physical and psychosocial needs and stressors. The ongoing relationship of the CHNs, under the guidance of an experienced nurse with joint responsibilities for preparing graduate nursing students in community health, while assuming case management and supervision responsibilities within the local community health nursing department, enabled continuity of care for the patients and educational opportunities for the student nurses. Caring for people living with HIV/AIDS is indeed a challenge for CHNs. However, dedication, compassion, commitment, confidentiality and professional competence of CHNs can make a difference in the lives of people who once had lost all hope.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]