Experiences and needs of carers of Aboriginal children with a disability: a qualitative study.

BACKGROUND: Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face 'double disadvantage'. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability. METHODS: Semi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis. RESULTS: Nineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers. CONCLUSIONS: Tailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.

Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach.

BACKGROUND: Models of palliative care need to address the unmet needs of children, young people and families. OBJECTIVE: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. DATA SOURCES: Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. STUDY SELECTION: Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. DATA EXTRACTION AND SYNTHESIS: Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. RESULTS: Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support. CONCLUSIONS: Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.

Assessment and management of adult cancer pain: a systematic review and synthesis of recent qualitative studies aimed at developing insights for managing barriers and optimizing facilitators within a comprehensive framework of patient care.

CONTEXT: Cancer pain is a common, burdensome problem, which is not well managed despite evidence-based guidelines. OBJECTIVES: To develop insights for managing barriers and optimizing facilitators to adult cancer pain assessment and management within a comprehensive framework of patient care. METHODS: We undertook a systematic review and synthesis of qualitative studies. Medline, PsycINFO, Embase, AMED, CINAHL, and Sociological Abstracts were searched from May 20 to 26, 2011. To be included, the articles had to be published in a peer-reviewed journal since 2000; written in English; and report original qualitative studies on the perspectives of patients, their significant others, or health care providers. Article quality was rated using the checklist of Kitto et al. Thematic synthesis followed a three-stage approach using Evidence for Policy and Practice Information and Co-ordinating Centre-Reviewer 4 software: 1) free line-by-line coding of "Results," 2) organization into "descriptive" themes, and 3) development of "analytical" themes informative to our objective. At Stage 3, a conceptual framework was selected from the peer-reviewed literature according to prima facie "fit" for descriptive themes. RESULTS: Of 659 articles screened, 70 met the criteria, reporting 65 studies with 48 patient, 19 caregiver, and 21 health care provider samples. Authors rarely reported reflexivity or negative cases. Mead and Bower's model of patient-centered care accommodated 85% of the descriptive themes; 12% more related to the caregiver and service/system factors. Three themes could not be accommodated. CONCLUSION: Findings highlight the need to integrate patient/family education within improved communication, individualize care, use more nonpharmacological strategies, empower patients/families to self-manage pain, and reorganize multidisciplinary roles around patient-centered care and outcomes. These conclusions require validation via consensus and intervention trials.