Background

Community Involvement: A coping strategy that

contributes to the quality of life of people living with HIV

outside the metropolitan area

Jorge Flores-Aranda (1), Joanne Otis (2), Jacques Gélinas (1), Gaston Godin (3), Michel Alary (4),

Mario Fréchette (5).

(1) Coalition des organismes communautaires québécois de lutte contre le sida(COCQ-sida);

(2) Canada Research Chair in Health Education, Université du Québec à Montréal (UQAM);

(3) Canada Research Chair on Behaviour and Health, Université Laval;

(4) Population Health Research Unit, Hôpital du Saint-Sacrement du CHA(5) MIELS-Québec

Background

A province-wide study funded by the Fonds Québécois pour la Recherche sur la Société et la Culture (FQRSC):

The interrelationship between health behaviour and aspects of the social environment on the reported state of health and the quality of life of people living with HIV (PLWHIV).

Objectives To describe how people living with HIV

(PLWHIV) define what quality of life means to them.

To describe how community involvement, as a coping strategy, contributes to the quality of life (QoL) of people living with HIV (PLWHIV) outside the Montreal area.

Methodology 8 focus groups in 8 different cities throughout Quebec,

with the exception of Montreal: Rimouski, Quebec, Hull, Laval, Chicoutimi, Drummondville,

Sherbrooke, Longueuil

Recruitment through regional AIDS community organizations

Strategic sampling through the use of many variables in order to ensure the diversity of the sample

Thematic content analysis (Bardin, 1977) with the use of ATLAS-TI software

Sample Description

74 participants 17 women and 57 men Mean age: 43 years (Range: 22-63 years) Sexual orientation:

29 heterosexual 36 homosexual 7 bisexual 2 unknown

10 participants expressed having been infected through the sharing of needles during injection drug use

Results Definitions of quality of life

Personal functioning: to function normally in daily life, like before

To be in a state of good physical and psychological health

Social functioning: to be well surrounded, accepted and integrated

Definitions of Quality of Life: Personal Functioning: To Function Normally in Daily Life, Like Before

To function normally like before

Be up and about, still able to get up in the morning

"Yes …obviously, quality of life means still being able to stand up, literally, to stand up and be able to function" (Man, Quebec City, 0303:0306).

To function in daily life like before the diagnosis"For me, quality of life, essentially, is to be able to function as before, but with one difference: the disease is present” (Man, Drummondville, 0302:0304).

Definitions of Quality of Life: Personal Functioning: to Function Normally in Daily Life, Like Before

To be autonomous, independent and self-sufficient

To do what we want without constraints and without having to depend on others

"For me, quality of life is being able to function normally without restrictions or with limited restrictions" (Woman, Drummondville, 0272:0274).

To be autonomous, both physically and financially

"For me, quality of life means independence, independence as far as employment is concerned, physically and financially" (Man, Quebec City, 0326:0329).

To be able to care for their basic needs in daily life: housing, food, daily expenses

"For me, quality of life is, first of all, having clean water to drink, food, a roof over my head, heat when it's cold outside. Quality of life is meeting the needs of everyday life." (Man, Quebec City, 0349:0353).

Definitions of Quality of Life: Personal Functioning: To Function Normally in Daily Life, Like before

To know how to keep busy

To have things to do

"Quality of life: having things to do, needs…I don't know.”

(Man, Hull, 0230:0231).

To be occupied instead of preoccupied

"I think it's keeping busy rather than worrying." (Man, Laval, 0354:0355).

To be able to work is good for the soul

"And for me, working is also good for the morale; I find that's a part of quality of life, but so are many other things as well."

(Woman, Quebec City, 0278:0280).

Definitions of Quality of Life To Be in a State of Good Physical and Psychological Health

Physical health: a prerequisite

"I think health is a big thing, because if you're not healthy, you can’t do much." (Man, Hull, 0247:0248).

To not experience pains and to not suffer, to experience the least amount of pains and ill-being and not to endure physical suffering

"It's about having as little pain and discomfort as possible." (Man, Rimouski, 0165:0166).

"I'll say one thing: quality of life is not suffering.”

(Man, Chicoutimi, 0269:0270).

Definitions of Quality of Life To Be in a State of Good Physical and Psychological Health

Psychological wellbeing

To feel comfortable, to be at ease with him/herself"It's feeling good in your own skin, I think." (Man, Rimouski, 0161:0161).

To be happy and to bring happiness to those around them (to make others happy)

"It's feeling good about myself and making everyone around me as happy as possible." (Man, Quebec City, 0256:0257).

Definitions of Quality of Life Social Functioning: To Be Well Surrounded, Accepted and Integrated

Be well surrounded Having people around

"Having people around you is important." (Man, Sherbrooke, 0239:0240).

Counting on family, friends or community groups"If you don't get along with your family, well, you have your friends or you have support groups, but in my case, family comes first." (Man, Hull, 0242:0244).

Loving, feeling loved and to give love "To me, it's having love; it's feeling loved and also giving love." (Man, Quebec City, 0353:0354).

Definitions of Quality of Life Social Functioning: To Be Well Surrounded, Accepted and Integrated

To be accepted by society

To not be subjected to stigmatization or to feel judged "It's being with other people and not feeling singled out because of the situation you're living with." (Man, Rimouski, 0166:0168).

To be well surrounded by people who actively deconstruct prejudices, to be respected"I think that to have a good quality of life, it's important to be surrounded by people who respect me and who'll try to break down the prejudices associated with HIV." (Man, Sherbrooke, 0291:0294).

To be a part of society, to be integrated within society

"It's about being accepted in society, not being a reject of society, really being an integral part of society, regardless of the differences." (Woman, Hull, 0258:0260).

Results Coping strategies (strategies of watchfulness)

Reflecting on one’s life as a PLWHIV Refocusing on one’s values Wanting to live and to change one’s lifestyle Turning to the community Undertaking satisfying activities Meeting other people living with HIV

Coping strategiesStrategies of watchfulness Reflecting on one’s life as a person living with HIV

Accepting the situation"On the other hand, it [HIV] has still led me into a quite intense period of reflection over the last two and a half years of my life, and at times, I'm beginning to see the fruits of that." (Man, Quebec City, 0993:0996).

"By now, I've adapted quite well to living with it [HIV]." (Woman, Rimouski, 0695:0695)

Reorganizing one’s life"I try to reason with myself and say: Hey, hold on a second,

you have a life to live even if you're sick, so try to live it the best way you can." (Man, Quebec City, 0908:0912).

Coping strategies Strategies of watchfulness

Refocusing on one’s values

Turning towards spirituality"HIV has brought me back to my basic values of love, generosity and open-mindedness." (Man, Quebec City, 0390:0393).

"I tell myself it's because of following a personal and spiritual path that I'm still here today; without that, I wouldn't be here." (Woman, Laval, 1926:1928).

Return to religious beliefs"I don't go to church or anything like that, but I talk to him [God] directly, and if I feel like telling him: 'Look, things aren't going well: wake up!,' I'll say it to him." (Man, Hull, 2545:2547).


Wanting to live and to change one’s lifestyle The will to live

"I've always done something to live; I've always done a lot of things so as not to get to that point. I've never thought of dying." (Woman, Laval, 0810:0812).

"I told myself, It's not this disease that's going to get me." (Man, Rimouski, 0916:0917).

Trying to live better"Since becoming HIV positive, I eat healthier food, I'm more careful in my life, I don't buy useless things, and I sleep and eat better. This has had a positive effect." (Man, Quebec City, 2404:2408).

"I don't drink anymore, I don't use drugs anymore; I'm clean, clean. I'm taking control of my life." (Man, Hull, 0793:07995).


Turning to the community

Getting help "I look at the group and I think: you're strong. I'm beginning to get into it like you, to understand that I'm not garbage, that I'm a human being, and that I have a right to my likes and dislikes too, and to get ahead, all because of you."(Woman, Drummondville, 1952:1958).

“Now, I've learned to live with HIV and I went to find the resources.”(Man, Rimouski, 0786:0787).

Getting involved “I decided to get involved, to do volunteer work. It keeps me going; I don't even think about my problems.” (Man, Sherbrooke, 1139:1142).


Undertaking satisfying activities

Helping others and helping oneself“It's by helping others that you get out of your own shit.” (Man, Quebec City, 3251:3251).

Being active

“Well, my morale is good. I do prevention work as a street worker. Things are going very well.” (Man, Longueuil, 0852:0854).

Refocusing oneself professionally

“Knowing that I'll become less physically strong, I went back to school. I've found less strenuous work.” (Man, Laval, 0867:08700).


Meeting other people living with HIV

Breaking the isolation

"I think it’s fantastic to be able to get together and talk. I realize that I don't feel alone." (Man, Chicoutimi, 0593:0595).

Helping one another

"The people who've helped me the most, and the people I've helped the most, are HIV positive like me. We sense each other, we vibrate together on the same wave length; we can hear and understand each other without even talking." (Man, Sherbrooke, 0946:0950).

The Link Between Coping strategies and Quality of Life

Definitions of Quality of Life

Coping Strategies related to community organizations and their actions.

Psychological well-being Reflecting on one’s life as a person living with HIV: accepting the situation; refocusing on one’s values; turning to the community.

Physical well-being Wanting to live and to change one’s lifestyle. Undertaking satisfying activities: helping others and helping oneself; being active.

Be part of society, integrated in society.To be autonomous, independent and self-sufficient.

Meeting other people living with HIV; helping each other; refocusing professionally.

Discussion Feeling comfortable with oneself, gaining inner peace

and being accepted by society are some of the definitions of quality of life given by the participants; a certain acceptance of HIV status is needed to achieve these desirable outcomes.

The acceptance of HIV-positive status appears to be closely related to the coping strategies used by PLWHIV.

For PLWHIV, a process of soul searching and reflection may begin when they receive the HIV-positive diagnosis.

Within this context, some PLWHIV seek help from community groups to find resources or help.

The nature of community action not only offers the opportunity to meet other PLWHIV, but also for social commitment.

Discussion Recourse to community organisations and the

opportunity to interact with peers appear to compromise a strategy that is closely linked to the quality of life.

Community organisations should attempt to reduce the barriers preventing access to their services and strengthen or diversify opportunities for community involvement and empowerment for people living with HIV.

Within a regional context, meeting with peers and the creation of a social network is essential, given the isolation that many PLWHIV experience.

Acknowledgements A special thanks to the people living with HIV who generously

shared their stories and life experiences. A special thanks to the community based co-investigators, Jacques

Gélinas and Mario Fréchette. A special thanks to the COCQ-Sida and all the participating

community organizations that participated in the study. BLITS BRAS-Outaouais Centre des ROSÉS ÉMISS-ERE IRIS-Estrie MAINS-Bas-St-Laurent MIELS-Québec MIENS RPVVIH SIDACTION Trois-Rivières SIDA-VIE Laval

Documents

Background