title: Advocacy, support and survivorship in prostate cancer.
abstract: Across Australia, prostate cancer support groups (PCSG) have emerged to fill a gap in psychosocial care for men and their families. However, an understanding of the triggers and influencers of the PCSG movement is absent. We interviewed 21 SG leaders (19 PC survivors, two partners), of whom six also attended a focus group, about motivations, experiences, past and future challenges in founding and leading PCSGs. Thematic analysis identified four global themes: illness experience; enacting a supportive response; forming a national collective and challenges. Leaders described men's feelings of isolation and neglect by the health system as the impetus for PCSGs to form and give/receive mutual help. Negotiating health care systems was an early challenge. National affiliation enabled leaders to build a united voice in the health system and establish a group identity and collective voice. Affiliation was supported by a symbiotic relationship with tensions between independence, affiliation and governance. Future challenges were group sustainability and inclusiveness. Study findings describe how a grassroots PCSG movement arose consistent with an embodied health movement perspective. Health care organisations who seek to leverage these community resources need to be cognisant of SG values and purpose if they are to negotiate effective partnerships that maximise mutual benefit.
authors.affiliation: Cancer Council Queensland, Fortitude Valley, Qld, Australia.|Institute for Resilient Regions, University of Southern Queensland, Darling Heights, Qld, Australia.|Menzies Health Institute Queensland, Griffith University, Gold Coast, Qld, Australia.|School of Social Science, The University of Queensland, St Lucia, Qld, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Dunn
authors.affiliation: Prostate Cancer Foundation of Australia, St Leonards, NSW, Australia.
authors.forename: C
authors.initials: C
authors.lastname: Casey
authors.affiliation: Prostate Cancer Foundation of Australia, St Leonards, NSW, Australia.
authors.forename: D
authors.initials: D
authors.lastname: Sandoe
authors.affiliation: Cancer Council Queensland, Fortitude Valley, Qld, Australia.|Menzies Health Institute Queensland, Griffith University, Gold Coast, Qld, Australia.
authors.forename: M K
authors.initials: MK
authors.lastname: Hyde
authors.affiliation: Prostate Cancer Foundation of Australia, St Leonards, NSW, Australia.
authors.forename: M-C
authors.initials: MC
authors.lastname: Cheron-Sauer
authors.affiliation: Menzies Health Institute Queensland, Griffith University, Gold Coast, Qld, Australia.|Prostate Cancer Foundation of Australia, St Leonards, NSW, Australia.
authors.forename: A
authors.initials: A
authors.lastname: Lowe
authors.affiliation: University of British Columbia, Vancouver, BC, Canada.
authors.forename: J L
authors.initials: JL
authors.lastname: Oliffe
authors.affiliation: Cancer Council Queensland, Fortitude Valley, Qld, Australia.|Institute for Resilient Regions, University of Southern Queensland, Darling Heights, Qld, Australia.|Menzies Health Institute Queensland, Griffith University, Gold Coast, Qld, Australia.|Prostate Cancer Foundation of Australia, St Leonards, NSW, Australia.|Exercise Medicine Research Institute, Edith Cowan University, Perth, WA, Australia.
authors.forename: S K
authors.initials: SK
authors.lastname: Chambers
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D017144:Focus Groups; D006801:Humans; D008297:Male; D010344:Patient Advocacy; D011471:Prostatic Neoplasms / Q000523:psychology*; D012657:Self-Help Groups / Q000458:organization & administration*; D012944:Social Support; D017741:Survivors / Q000523:psychology; D000073859:Survivorship
keywords: health advocacy; men's health; peer support; prostate cancer survivors