Examining the evidence – psychosocial and support needs of the main caregivers for adolescents and young adults undergoing treatment for cancer

Pettitt, Nicola Jayne (2023). Examining the evidence – psychosocial and support needs of the main caregivers for adolescents and young adults undergoing treatment for cancer. University of Birmingham. M.Res.

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Abstract

Background: Adolescents and young adults with cancer (AYAC) are identified as a population with unique needs requiring age-appropriate, specialist care. The concept of age-appropriate care recognises individuality and takes into consideration the wider context of young people’s psychosocial and developmental circumstances. Family relationships and social networks are known to be critically important, impacting on the young person’s experience and wellbeing throughout the cancer trajectory. Caregivers play a prominent and critical role both practically and psychologically, however this can create significant emotional, psychological, physical, and practical burdens. Given the developmental life stage of AYAC a cancer diagnosis impacts on evolving independence and developing identity. This can present additional challenges and conflict for caregivers of this age group. Together they and the AYAC must renegotiate relationships and carefully navigate the unfolding situation, against a backdrop of changing autonomy. Health care professionals have a supportive and educational role to play for AYAC and caregivers.

Objectives: To examine the evidence relating to the psychosocial and support needs of the main caregivers for AYAC.

Structure and methods: This thesis is presented in three parts: a scoping review (Part 1), a secondary data analysis of the only multicentre, specific AYAC carer unmet needs questionnaire undertaken in England (Part 2,) and a reflective report on the period and process of MRes study (Part 3). The National Institute for Health and Care Excellence (2014) quality standards for AYAC psychological and social needs assessment were used as a framework to define caregiver needs. A reflexive approach to thematic analysis was taken to synthesise the data. A thematic matrix was developed to identify themes and report the findings (Part 1). For the secondary data analysis, descriptive statistics and correlations were used (Part 2). Finally, the Peshkin Approach provided a reflective model. Through the identification of my ‘Subjective I’s’, understanding and approaches to learning were examined, broadened and deepened.

Findings: The scoping review (Part 1) identified six themes relating to the psychosocial and social needs of the main caregivers of AYA undergoing treatment for cancer; carer type, practical and information needs, place of care, emotional impact, assessment of caregiver needs, and shared experience. Considerable heterogeneity of needs experienced was demonstrated. Examination of the themes found caregiver needs relating specifically to this cohort of cancer patients. These included the impact of developmental life stage on parents and partners, conflicts relating to information provision, the effect of place of care on caregivers, the need to consider a dyadic approach to care, and lack of assessment tools to capture the specific needs of AYAC caregivers.

In Part 2, the secondary data analysis found that over half the respondents (n=516) had been given information about their needs as a caregiver, with the majority finding this very or fairly helpful. Of those that had not received the information, 80% would have liked it. Responses showed caregivers reported high levels of negative emotional and psychological wellbeing, with 91% experiencing self-diagnosed symptoms of feeling depressed or anxious, always or often since the young person’s diagnosis (41%). Creation of a ‘total distress’ construct demonstrated significant results for parents, females, those unemployed or earning a below average wage and younger caregivers

The examination of my ‘Subjective I’s’ in Part 3 provided powerful personal realisations and enhanced learning experienced through the period of my Masters study. Recognition of the impact of COVID-19 across my Expert, Novice, Caregiving, Imposter, Empathetic and Encouraging I’s brought self-awareness and acceptance with a new found confidence in my research. This has generated future aspirations for study to benefit young people with cancer and their loved ones.

Conclusions: Diagnosis of cancer in a young person negatively impacts the emotional and psychological wellbeing of their main caregivers. The developmental life stage of AYAC presents unique challenges for their caregivers and the health care professionals providing support through treatment. The psychosocial and support needs of caregivers are broad and multidimensional. Who and where the caregivers are appears to impact needs. Some characteristics may present a higher propensity to distress, partners are often overlooked, information needs can generate conflict and place of care may influence the support experienced. When specific information relating to caregiver needs is provided it is generally well received and can have a positive impact.

Findings offer health care professionals increased awareness around AYAC caregiver needs, highlighting individual characteristics that may require more attention. Tailoring service provision to meet needs will necessitate the incorporation of a wide range of offers as one size will not fit all and preferences will vary. Bespoke assessment of caregiver needs is a significant area for future development, especially those of partners. Findings will inform future research into more directed areas of caregiver information design and provision, signposting and support. Caregivers need help to fulfil their role, thus become better equipped to contribute to AYAC experiences positively.

Type of Work:

Thesis (Masters by Research > M.Res.)

Award Type:

Masters by Research > M.Res.

Supervisor(s):