Carer experience of supporting an individual with HNC
Research type
Research Study
Full title
Exploring the unmet needs of adult carers supporting a family member or friend with Head and Neck Cancer (HNC), who are 75 years and above.
IRAS ID
336021
Contact name
Gemma Cherry
Contact email
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
Summary of Research
Head and neck cancer (HNC) is the 8th most common cancer in the United Kingdom (UK); around 12,400 patients being diagnosed every year, with incidence rates increasing by a sixth (16%) in the UK over the last decade. More than 22% of all new HNC diagnoses are in individuals who are 75 years old and above, but limited information exists on carers who support these age groups. Patients aged over 75 experience diverse and often unique challenges; this patient group have been historically excluded from clinical trials and are more likely to live with comorbid health conditions that may pose barriers to treatment, management and recovery that would otherwise not be present in those who are diagnosed younger. However, little is known about the needs and experiences of those who support them. This study aims to explore the unmet needs of carers who are 18 years and above and support a family member or a friend who is 75 years and above, with a current diagnosis of HNC.Carers, who are 18 years and above and supporting a family member or friend who is 75 and above, with a current diagnosis of HNC, and living in the United Kingdom will be eligible for the study. Participants will be recruited from hospitals and online, with possible recruitment sources including, but not limited to, Aintree Hospital, Clatterbridge Cancer Centre and the Swallows HNC Charity.
A qualitative approach using semi-structured interviews will be utilized to understand participant experiences. Participants will be interviewed via telephone, Zoom or Microsoft Teams. Interviews will last approximately 45-60 minutes. Data will be analysed using thematic analysis.
Summary of Results
Despite 22% of all new Head and Neck Cancer (HNC) diagnoses affecting those aged 75 and above, to our knowledge, this is the first study of its kind exclusively exploring the role of carers supporting Older Adults (OAs) aged 75 and over with HNC. The thematic approach provides an authentic portrayal of these carers’ experiences. Three overarching themes and six sub-themes were identified: (i) relief of a diagnosis (losing trust in the system, navigating challenges and uncertainty); (ii) “we are not forgotten; but we are an afterthought” (rising demands, feeling unheard in communication); and (iii) The only safe haven: “I am the only person she feels safe with” (reversed roles, uncertain tomorrows). OAs’ carers noted that variety and lack of severity in initial symptoms, along with possible comorbidities due to age, led to delayed diagnosis, and mistrust in the system. Psychological needs were pertinent for both carers and OAs with HNC. Research closely adhered to the structure outlined by Pearlin’s framework, looking at background, stressors (primary and secondary), mediators and outcomes.To summarise, carers noted that due to the high care demands for OAs with HNC, accessing support to address their own needs could not be prioritised, constituting a significant stressor. Carers noted that, due to OAs’ beliefs/stigma around mental health, they did not always engage with support services, and for those willing to engage, services tailored to OAs with HNC was lacking. Carers also noted that their own needs and limitations were overlooked by services, leaving them feeling pressured into caring roles. For example, carers looking after parents sometimes moved back home, while older and elderly carers were often assuming day-to-day clinical responsibility due to lack of tailored support. Carers also noted that HCPs often made assumptions regarding the cognitive abilities of OAs with HNC. Some noted an overestimation of OAs’ ability to manage HNC treatment, failing to simplify or tailor communication, while others noted some OAs’ need for independent and private communication being overlooked. Similar assumptions were made about OA carers. In either case, being the people with greatest insight into the particular challenges facing their loved one with HNC, carers were vital advocates. Furthermore, the detrimental impact of HNC on OAs often results in a loss of independence and greater reliance on carers, whether spouse, adult children or friend. For carers, fear of cancer reoccurrence or a new diagnosis in their loved one was heightened due to the OA’s age and the likelihood of comorbidity. Carers often reported that their capacity to offer support was dependent upon how well their own needs were met.
REC name
North West - Preston Research Ethics Committee
REC reference
24/NW/0012
Date of REC Opinion
7 Feb 2024
REC opinion
Further Information Favourable Opinion