EACME ANNUAL CONFERENCE2-4 OCTOBER, 2014

LILLE, FRANCE“FRAILTY, VULNERABILITY AND SOCIAL PARTICIPATION”

ETHICAL, SOCIAL AND POLITICAL CHALLENGES FOR AN INCLUSIVE SOCIETY

THE VULNERABILITY

EXPERIENCED BY PERSONS WITH

MULTIPLE SCLEROSIS. PRELIM I NARY FINDI NG S O F A

M ULTIM ETH O D Q UALITATIVE STUDY.

MANARA D.F., GASTALDO F., VOLONTÈ D., CAO E., GANDOSSI C., CARDAMONE R., FALAUTANO M.

University Vita-Salute San Raffaele, School of Nursing, Milan

AIM OF THE STUDY:

I D E N T I F Y T H E P R E S E N C E O F P O S S I B L E FA C T O R S R E L AT E D T O T H E P E R C E P T I O N O F V U L N E R A B I L I T Y

P O I N T O U T H O W N U R S E S C A N G E T A D E E P E R U N D E R S TA N D I N G O F T H E E X P E R I E N C E O F V U L N E R A B I L I T Y A N D P R O M O T E PAT I E N T S ’ R E S I L I E N C E A N D C O P I N G R E A C T I O N S T H R O U G H T H E I R A C T I O N S

TO I NVESTIG ATE TH E EXPERI ENCE O F VULNERABILI TY IN PERSO NS WITH

M ULTIPLE SCLERO SI S IN O RDER TO :

BACKGROUND 1 /3TH E CO NCEPT O F VULNERABILITY

VULNERABILITY EXPRESSES:

Frailty and finitude of human existence and the possibility that

people’s autonomy, dignity and integrity are threatened

(THE BARCELONA DECLARATION POLICY, 1998)

Susceptibility to either a higher than normal exposure to risk or

a reduced capacity to protect themselves (SELLMAN, 2005)

“Vulnerability expresses the condition of all life as able to be

hurt, wounded and killed”(KITTAY, 1999; NUSSBAUM, 2004)

BACKGROUND 2 /3VULNERABILI TY IN NURSI NG LITERATURE

The DISEASE is a situation of endless vulnerability (DANIEL,

1998)

The HEALTH CARE SETTING causes patients’

vulnerability, stress and coping strategies (BENNER, & WRUBEL, 1989)

NURSING is a response to human vulnerability as it gives

autonomy, dignity and self-esteem back to patients (EDWARDS, 2001;

LAVANCO, & NOVARA, 2002)

BACKGROUND 3 /3VULNERABILI TY AND M ULTIPLE SCLERO SIS

M U LT I P L E S C L E R O S I S :

has deep physical and psycho-social consequences (PARKENHAM, 1997)

makes plannig the future very difficult (DANIEL, 1998)

has a strong impact on the family (PARKENHAM, 1997)

exposes patients to the possibility of feeling vulnerable (FALAUTANO,2012)

PAT I E N T S W I T H M U LT I P L E S C L E R O S I S E X P E R I E N C E

V U L N E R A B I L I T Y I N H E A LT H C A R E S E T T I N G S I N R E L AT I O N T O :

diagnosis (BURGESS, 2010)

communication problems with health care professionals (MALCOMSON,2008)

lack of understanding (MALCOMSON,2008)

lack of emotional and cognitive support (COURTS, 2004)

METHODS 1/2

RESEARCH DESIG N : Qualitative, exploratory multi-method study (MORSE, 1991; DENZIN & LINCOLN, 1998; WATSON, MCKENNA, COWMAN, & KEADY, 2008)

SAM PLE : Snowballing sampling from patients recruited through databases and interviews with neurologists of the Neurology Department of Institute of Scientific Research and Cure, San Raffaele Hospital in Milan. Some subjects were recruited during the hospitalization in Functional and Neurological Recovery and Rehabilitation Unit, San Raffaele Hospital in Milan.

SETTING : Neurology Department of the Scientific Institute of Research and Cure, San Raffaele Hospital, Milan.

METHODS 2/2

DATA COLLECTION METHODS: QUANTITATIVE APPROACH: Patients were asked to fill in

questionnaires in order to discover useful and predictive factors in their perceptions of vulnerability and well-being.

QUALITATIVE APPROACH: Three semi-structured interviews and four Focus Groups (with four or five patients with Multiple Sclerosis each) were conducted.

DATA ANALYSIS METHOD:PHENOMENOLOGICAL-HERMENEUTICAL METHOD:

identification of meaning units, categories and macro-categories/ themes starting from the verbatim transcript of the interviews (SMITH, 2004).

PRELIMINARY FINDINGS 1/4MAIN TOPICS

THREE MAJOR THEMES WERE IDENTIFIED:

A. Coping strategies adopted by patients to face the disease;

B. The relationships between patients with MS and their families;

C. The helping relationships between patients and health care professionals.

PRELIMINARY FINDINGS 2/4C O P I N G S T R AT E G I E S

“I didn’t feel sorry for myself, I became aware of the situation and I faced this perception of vulnerability wondering which were the real values in my life, what was really important to me. And I found the answers in God. [003.C;37]

“It may sound a paradox but the disease hasn’t made me more vulnerable. Now I have a physical disability but I have more time to think about what other people tell me and about how to cope with the situation, I am more thoughtful (…). Before the diagnosis I used to throw myself into any situation and I often hurt myself”. [002.C;38]

“With time I accepted the label, I realized that I couldn’t hide my disability but it was hard work. I had always tried to hide it because that made me feel less vulnerable,but then you realize that you can’t hide it forever because everybody sees it. It was probably then that I felt a bit better”. [003.C;13]

“I think that the concept of vulnerability related to the disease changes and has ups and downs.The disease changes you, believe me, because at first we think we are vulnerable then, by the time that we lose our autonomy, our self-esteem increases and we start to love ourselves and feel stronger and live better”. [004.A;9]

FA M I LY S U P P O RT

“My husband, for example, observes me but never replaces me. He never does anything if I don’t ask him for help because he doesn’t want me to give up. But when he realizes I have some difficulties, he helps me. It’s the same with my neighbours. It’s no use hiding your problem, this is the reality of my situation”. [001.D;11]

“Giving help without making you feel a burden is something that can help relieve the feeling of vulnerability(….). One should never say:”No,you are not able to do this thing anymore, I must do it for you!!”. [B;13]

After diagnosis I felt really bad and I said to myself: “I am 33, I don’t have a job, I don’t have a girlfriend and I don’t have health anymore”. I didn’t have anything to live for. That was the moment in which I wavered, but fortunately my family was always there for me”. [003.D;33]

“My relatives don’t understand my situation.They think I can manage and keep telling me: “Do this! Do that!”. And I say:”I can’t!”. I feel helpless because I can’t communicate my weakness,I can’t make them understand my difficulty”. [001.B;32]

“As to the relationship with my husband,I was really disappointed.You think your spouse can offer you a shoulder to cry on and you realize that it’s just a figment of your imagination,nothing more!”. [002.C;36]

PRELIMINARY FINDINGS 3/4

HEALTH CARE PROFESSIONALS AND CARING ACTION

“It’s their behaviour that sometimes makes things more difficult. There is a French expression:”C’est le ton qui fait la musique”(…) . If the tone is harsh, the music is bad. If the tone is sweet and gentle the music is beautiful”. [C;14]

“One of the situations that makes me feel more vulnerable in hospital is when I go to the toilet and health care professionals come in without asking for permission.(…).We are human beings despite our disability!”. [002.C;48]

“It is something that makes you feel alive,when nurses are human as they come in your room to say hello.I am not an object(…..) They don’t make a big thing of the fact that they are doing their job”. [001.A;13]

“Treating patients with humanity means treating them as persons, because they’re not numbers! I mean… maybe they treat you like a number and you would like to be treated as a person. A smile and a gentle approach are always appreciated by patients”.[004;C]

PRELIMINARY FINDINGS 4/4

D I S C U S S I O N 1 / 3M S A N D C O P I N G S T R AT E G I E S

R E S E A R C H L I T E R AT U R E

Express clearly one’s needs in order to be understood.

Invisible symptoms lead to express one’s disability in order to be helped (GRYTTEN & MASEIDE, 2006).

Physical limitations oblige patients to give up many aspects of life (job), in favour of other priorities.

Patients keep their job despite their physical disabilities (OLSSON, 2008).

Faith as a way to cope with the disease. Hope in religion and faith to cope with the disease (MILLER, 1997).

Patients improve their reflective attitude and relationships.

Patients improve their relationships and other aspects of their lives (MOHR, 1999).

STRATEGIES: playing down; doing voluntary work; avoidance; concealing disability.

STRATEGIES: denial (COURTS, 2004);

avoidance (BOLAND, 2012); counselling relationship (MALCOMSON, 2008).

DISCUSSION 2/3H E L P I N G R E L AT I O N S H I P S : PAT I E N T S A N D FA M I L I E S

R E S E A R C H L I T E R AT U R E

Awareness of disability makes patients accept help despite psychological difficulty.

Physical changes lead persons with MS to look for help (MALCOMSON, 2008) .

Patients must keep their autonomy in order not to give up.

Keep one’s independence in order to face the disease (MILLER, 1997).

When patients receive too much help they fell more vulnerable.

When the family is too involved patients feel less responsible (GRYTTEN & MASEIDE, 2006).

Family is the place where patients feel more vulnerable for lack of help or lack of understanding of their difficulties.

Families and friends are unable to accept the limits of SM (CHEUNG & HOCKING, 2004).

Partners’ support and understanding are of fundamental importance in coping with the disease and feel useful.

Partners’ importance to make patients feel still useful and appreciated (BOLAND, 2012; MALCOMSON, 2008).

D I S C U S S I O N 3 / 3H E L P I N G R E L AT I O N S H I P S : PAT I E N T S A N D H E A LT H C A R E

P R O F E S S I O N A L S

R E S E A R C H L I T E R AT U R E

Lack of education, sensitivity and acceptance make patients feel more vulnerable.

Communication problems, lack of a warm welcome make patients feel more vulnerable (ISAKSSON & AHLSTRÖM, 2006).

Privacy denial make patients feel more vulnerable.

Neglected emotional needs make patients feel more vulnerable (COURTS et al., 2004).

A smile, a greeting, a word of encouragement, the understanding of patients feelings and the respect of their times and needs make patients feel less vulnerable.

Understanding and support create a feeling of confidence and consolation (OLSSON, 2008; ISAKSSON & AHLSTRÖM, 2006).

When health care professionals treat patients as persons and not as numbers they feel less vulnerable.

Patients were more disposed to accept their disease when nurses cared more about their emotional well-being (WHITE, 2007).

CONCLUSIONS

L I M I T S O F T H E S T U D Y: Interpretation of qualitative research data;Difficulties for patients to deal with the topic;Data analysis is still in progress.

I M P L I C AT I O N S : Nurses have a huge responsibility in recognizing the persons with MS as more vulnerable, in order to be able to support them in finding strategies of coping that can help them to face their disease and soothe their perception of vulnerability.

This study highlights how vulnerability is not easy to be identified by persons with

MS. The dynamics of the social relationships, family and health care support could have an impact on its

perception.