This study aimed to explore relatives’ experiences of sharing information related to cancer within the family and to identify relatives’ information and support needs in relation to their relative’s cancer. It also aimed to identify written materials to support conversations about cancerand to establish relatives’ views regarding the value of written materials to support conversations about cancer. It makes recommendations about the provision of resources to support families in talking about cancer and for further studies to support partners and families in sharing information about cancer.
The provision of information for patients and others affected by cancer has been highlighted in the Cancer Reform Strategy as an area for improvement in national cancer services (Department of Health, 2007). The Advanced Care Planning Guide (2007) has similarly highlighted the importance of effective communication and information sharing for patients and their relatives. However, patients have raised concerns about a lack of support for their partners and relatives (Corner et al., 2007) and how they should talk to family members about their cancer (Manning & Dickens, 2007; Corner et al., 2007).
A User Reference Group and Steering Group informed the study design, procedure and data interpretation. The Chair of the User Reference Group, a relative affected by cancer, facilitated the discussion group. Twenty-two relatives of cancer patients (those with common and rarer cancers) participated in in-depth qualitative interviews on one occasion only to explore their experiences and support needs to address aims 1 and 2. Seven relatives also participated in discussions about available resources designed for relatives of cancer patients to address aims 3 and 4. Relatives were recruited from the local community through media advertisements, advertisements through council and fire service intranet and posters/flyers distributed in the community. The interviews and discussions were audio-recorded, transcribed and analysed using a thematic approach.
BRIEF SUMMARY OF FINDINGS
Relatives indicated that a lack of information made them feel unable to offer best care and support to their relative with cancer. They also indicated that they felt isolated at times and did not feel entitled to information and support as the patient was the priority. However, rather than being left to find things out for themselves they would have liked some guidance. Supporting families is likely to enhance the support available to people living with and beyond cancer.
Internal: Dr Claire Foster, Issy Scott, Dr Lucy Brindle, Dr Phil Cotterell, Dr Jane Hopkinson, Prof Julia Addington Hall
External: Prof Sheila Payne (Lancaster), S Payne, Mary Sayers, Judith Robison (Research Partners)
Macmillan Cancer Support
Relatives and partners
Talking about cancer
Information and support needs