Transcript Carers’ Voices: Caring for Head and Neck Cancer Patients

Ms Geraldine McNicholas, Royal Victoria Eye and Ear Hospital, Dublin
Ms Kathleen Neenan, School of Nursing and Midwifery, TCD
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Cancers of the Head & Neck include:
◦ Cancers of the mouth, Salivary glands, Pharynx, Larynx, Nasal
Cavity, Sinuses and Thyroid gland
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o
Aetiological Factors:
Tobacco Use, Excessive alcohol consumption, poor nutritional
status, poor dental hygiene, Viruses such as Epstein-Barr and
P16 (human papilloma virus)
(NCRI 2011)
Surgery
Radiotherapy
Chemotherapy
Combination
or
of all of the above
◦Limited research on caregiving of head & neck cancer patients
◦Healthcare professionals’ recognition of work of family
members
(DOHC 2001, 2006, WHO 2004)
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Aim/Objective:
◦To determine the experiences of primary caregivers of
head & neck cancer patients at the acute survivorship stage
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Research Design:
◦Qualitative Descriptive

Sampling: Purposive

Sample size: 7 primary caregivers

Negotiation of access: Ethical approval gained from Faculty of
Health Sciences, TCD & Clinical Site

Data Collection: Semi-structured interviews

Data Analysis: Content Analysis (Newell & Burnard 2011)
Caregiver Role
14%
Spouse
Sibling
86%
Occupation
3
3
1
Employed
Self-Employed
Homemaker
Dependents
1
2
4
Children
Grandchildren
Parents

Caregiving demands

Navigating the healthcare system

Impact on caregivers
Tracheostomy
Care
Negative
psychological
impact
Impact
on Carers
Maintaining
spousal
relationships
Lifestyle
Restriction
‘I was afraid of the tracheostomy. I thought something could happen to him. I
was afraid to suction him. You are always a bit nervous that something goes
wrong’
(Participant 1)
‘On one occasion he coughed his tracheostomy out. I had been shown how to
put it in and had a spare one, so I had to act quickly and put it in. It was
only afterwards that I realised ...phew that was lucky’
(Participant 2)
‘It changes your life. It’s all consuming. It was really difficult for us
because when we go out, we go out to eat and drink and he couldn’t do
either’.
(Participant 2)
‘ It did affect us socially. People did not know how to treat x. People
got embarassed when they realised that she couldn’t speak’.
(Participant 5)
‘I suppose our relationship was strained for a while as this sickness
took over everything in the house. He did nothing for 2 years. I did
everything. I suppose I found it hard to relinquish that’.
(Participant 2)
‘I think it brought us closer together. We are happy once we are at
home together’.
(Participant 5)

Experiences similar to carers of patients in other medical
contexts.

Head and neck cancer patients have complex needs (Verdonckde Leeuw 2007, Ross et al. 2010)

Primary Caregivers need to acquire specialist knowledge to
provide safe care at home, ie Tracheostomy Care, Gastrostomy
tube care.

Paucity of research on management of tracheostomy tubes at
home.

Functional impairment lead to greater hours caregiving
(Verdonck-de Leeuw 2007, Chen et al. 2009)

Lifestyle modifications (Watt-Watson and Graydon 1995, Roing
et al. 2008)

Females experienced greater difficulties with spousal
relationships (Hagedoorn et al. 2001, Ussher et al. 2010)

Negative impact on psychological well-being (Zabora et al. 2001)

Healthcare Professionals need to recognise the impact of
caring on primary caregivers of head and neck cancer
patients.

Support them in their role

Multi-disciplinary approach

Pivotal role of Clinical Nurse Specialist
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Head and neck cancer patients
Participants
Director of Nursing at the clinical site
ENT consultants
Gatekeeper
Research supervisor
Colleagues
Family
Chen S C., Tsai M C., Liu C L., Yu W P., Liao C T., Chang J T. (2009) Support needs
of patients with oral cancer and burden to their family caregivers. Cancer Nursing
32(6), 473-481.
Department of Health and Children (DOHC) (2001) Report of the National Advisory
Committee on Palliative Care. DOHC, Dublin.
Department of Health and Children (DOHC) (2001) National Cancer Forum: A strategy
for cancer control in Ireland. DOHC, Dublin.
Hagedoorn M., Sanderman R., Ranchor A., Brilman E I., Kempen G I J M., Ormel J.
(2001) Chronic disease in elderly couples: Are women more responsive to their
spouse’s health conditions than men. Journal of Psychsomatic Research 51(5), 693-696.
National Cancer Registry (NCRI) (2011) Cancer Trends: Cancer of the head and neck.
Retrieved from http://www.ncri.ie/pubs/pubs.shtml. On 6 February 2012.
Newell R., Burnard P. (2011) Research for Evidence-Based Practice in Healthcare. 2nd
Ed. Blackwell, UK.
Roing M., Hirsch J M., Holmstrom I. (2008) Living in a state of suspension – a phenomenological
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Ussher J M., Tim Wong W K., Janette P. (2010) A qualitative analysis of changes in relationship
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238-241.
Watt-Watson J., Graydon J. (1995) Impact of surgery on head and neck cancer patients and their
caregivers. Nursing Clinics of North America 30(4), 659-671.
World Health Organisation (2004) Palliative Care: The Solid Facts. World HealtthOrganisation Regional
Office for Europe, Copenhagen.
Zabora J., Brintzenhofeszoc K., Curbow B., Hooker C., Piantadosi S. (2001) The prevalence of
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