Rebekah Laidsaar-Powell1, Phyllis Butow2, Stella Bu2, Alana Fisher2, Ilona Juraskova2. 1. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Level 6, Chris O'Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia. rebekah.laidsaar-powell@sydney.edu.au. 2. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Level 6, Chris O'Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia.
Abstract
PURPOSE: Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients' and FMs' perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement. METHODS: Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods. RESULTS: Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs' provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of 'messenger' between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs). CONCLUSIONS: FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.
PURPOSE: Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients' and FMs' perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancerpatients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement. METHODS: Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancerpatient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods. RESULTS: Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs' provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of 'messenger' between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs). CONCLUSIONS: FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.
Entities:
Keywords:
Cancer; Communication; Consultations; Family carers; Qualitative; Triadic
Authors: Halina Sklenarova; Arne Krümpelmann; Markus W Haun; Hans-Christoph Friederich; Johannes Huber; Michael Thomas; Eva C Winkler; Wolfgang Herzog; Mechthild Hartmann Journal: Cancer Date: 2015-02-11 Impact factor: 6.860
Authors: Katherine Treiman; Elissa C Kranzler; Rebecca Moultrie; Laura Arena; Nicole Mack; Erica Fortune; Reese Garcia; Richard L Street Journal: J Patient Exp Date: 2022-04-21
Authors: Markus Horneber; Gerd van Ackeren; Felix Fischer; Herbert Kappauf; Josef Birkmann Journal: Integr Cancer Ther Date: 2018-10-23 Impact factor: 3.279