Mrs Elaine Formosa (Malta)

Lived experiences of parents with children recently diagnosed with Acute Lymphoblastic Leukaemia

Outline of Presentation • Local Scenario in Malta

• The Paediatric Oncology Unit in Malta

• The Local Non – Governmental Organisation for Oncology patients

• Acute Lymphoblastic Leukaemia

• Aim of Research

• Theoretical Framework

• Research Design

• Population

• Data Analysis

• The Lived Experiences / Themes

• Recommendations

• Nursing collaboration

Local Scenario Local Oncology Centre

Cancer in Paediatric patients

• Most common: Acute Leukaemia or Lymphoma

• Others: brain tumours, sarcomas or embryonal tumours

Paediatric and Adolescent Oncology

Unit - Rainbow Ward

Classroom

Kitchen

Outdoor Play areaAdolescent room

Playroom

Multidisciplinary team of healthcare professionals

involved in the care of children and adolescents

Puttinu cares - Non-Governmental

Organisation

Cancer support group for all families of

patients with cancer.

Provides support locally and also

abroad.

Acute Lymphoblastic Leukaemia• Most common diagnosis between 2-5 years of age

• Duration of treatment 3 years in boys vs 2 years in girls

• The 3 phases Induction Phase – (Intensification

and Maintenance)

• 4 – 6 weeks of hospitalisation

• Introduction of a Central Venous Access Device

(CVAD) for chemotherapy and oral medications

• Continuity of care at home under the responsibility

of the parent / guardian of the child

1 . W H AT C A R E I S B E I N G D E L I V E R E D B Y T H E PA R E N T / C A R E G I V E R ?

2 . W H AT F O L L O W S T H E S I T U AT I O N AT H O M E ?

To explore the lived experiences of parents

following the first discharge from hospital of

their child who has been diagnosed with

Acute Lymphoblastic Leukaemia.

Aim

Theoretical FrameworkMeleis Transition theory

Nature of transition

Transition Conditions

Patterns of response

Nursing Therapeutics

Research Design • Qualitative Research Approach

• Local selection of participants through an intermediary person

• Ethical approval from institutions and consent from participants

• Data collection was conducted over a period of three months

• Semi-structured interviews with participants

• Referral to other health care professionals was considered

Population Participants Participant 1 Participant 2 Participant 3 Participant 4 Participant 5

Relation to child Mother Mother Mother Mother Mother

Child gender

M = Male

F = Female

M F M M M

Childs’s age at

diagnosis12 years 6 years 4 years 4 years 3 years

Time of interview since

diagnosis1 year 5 months 1 year 1 year 9 months 2 years 1 year

Presence of siblings Y Y Y Y N

Relationship status Married Separated Married Married Single

Occupation Housewife Employed Housewife Employed Unemployed

Interpretative Phenomenological Analysis

Understand the meaning of the lived experiences of parents

Interpret the experiences in a hermeneutic relationship

Focus on each experience as a case-study approach

Data Analysis

Theme 1- Mixed emotional cycle

Living the Unknown

“We were going through a rough

patch before the diagnosis because

we did not know what was

happening. We were very anxious. ”

Disconnected

World

This is sickness, you think of death,

you don’t know what is in store…”

Theme 2 - Relocations

Mixed emotions upon returning

home

Uncertainties

“I wasn’t happy when we had to leave.

The ward is like a comfort zone where

my mind was at ease.”

“I was constantly afraid of making a mistake, that I might forget something”

Vigilant “You end up being the nurse at home.”

Theme 3 - Daily struggles of parents caring for children with ALL

The child’s

behaviour

“In the morning he just wouldn’t wake up,

he was constantly angry, shouting and

crying, he was clearly not himself ...”

Adaptations “I look like an elf mom; I’m not good

looking any more”

Theme 4 - The Way forward

‘Normality’

Family

Responsibilities

Six months are doable, but three years! ...That’s really

hard. That’s the best you can get while trying to live a

normal life

the father … used to help a lot with house work. He

started doing the laundry, something which he had

never done before. He used to help me in other ways

Financial

Complications You have to get used to a new lifestyle with less

income. At one point, I ended up so broke

A different

life

Theme 5 - A Shifting Perspective “I have learnt how to appreciate life more.... I spend

more quality time with my daughter and her siblings….

You appreciate more the people around you. You really

learn a lot!”

Accepting

reality

Hope and

Faith

“This is a closed box. Now it’s half open. I

still don’t know however what I will find in

the bottom.”

“Yes, thank God: he is getting on with his life;

he [the child] interacts well with his peers.”

Coping

systems

Theme 6 - Supportive Encounters

“……The transition is like throwing someone

from hot water into cold water, from hospital to

home… Now you have to manage the cold

water.”

Supportive

measures

“I wish there was someone who could spend an

hour with him…I had to keep an eye on him all

the time, I couldn’t even go to the next room.”

Recommendations• Supportive structures at hospital and at home.

• Home assessment interventions to accommodate

an immunosuppressed child.

• Specialised multidisciplinary team

• Increase of educational systems

• Psychological support extended to family members especially grandparents and

siblings.

• Further research focusing on fathers of children with leukaemia in both quantitative

and qualitative longitudinal studies.

Nursing Collaboration • Sharing of clinical nursing knowledge on an international scale

• Delivery of education systems to nursing students in paediatric

oncology units by specialised nurses

• Global collaboration of research in paediatric oncology care

• Keep up to date with the latest medical advances and the introduction

of new clinical trials

• Working across international borders to benefit from the most recent

innovations.

E-mail: elaine.c.formosa@gov.mt