Family caregivers of individuals with acquired brain injury (ABI) and other chronic disabilities typically experience long-term adjustment difficulties within the entire family system. Interventions to assist parents and spouses are rare, and for siblings and offspring even more so. Among the few existing interventions, only a very small number have been evaluated in any scientifically sound manner for effectiveness in alleviating stress and burden. A highly targeted literature search of family caregiver intervention studies identified 31 articles, only four of which were in brain injury, which met specific inclusion criteria. Randomized controlled trial studies of six types of family caregiver interventions were systematically assessed for their quality of design and evidence of effectiveness. The results revealed a body of literature lacking in methodological rigor. At present there is no strong research evidence supporting any specific intervention method for family caregivers of individuals with ABI or any of the other chronic condition groups surveyed, although an abundance of anecdotal, descriptive, and quasi-experimental support exists in the rehabilitation literature. This conclusion points to the need for launching new pilot studies and rigorous evaluations of caregiver intervention effectiveness, some of which are now emerging or in process in several locations across the United States.
"Despite the recognition that many families have significant needs, there is only a relatively small amount of theoretically motivated research evaluating family interventions (Oddy & Herbert, 2003; 2009). Concerns about the methodological rigour of the majority of existing studies and generalizability of findings have been highlighted in the literature (Boschen et al., 2007; Ramkumar & Elliott, 2010). Studies exploring interventions for families following brain injury tend to focus on a combination of education, psychological support and skill development such as problem-solving, stress management or behaviour management. "
[Show abstract][Hide abstract] ABSTRACT: It has been recognised for several decades that a moderate to severe acquired brain injury frequently causes a high level of psychological stress within the imme-diate family, who often provide long-term care and support. However, although there is an abundance of research evidence for family burden and stress follo-wing brain injury, research into the effectiveness of psychological interventions designed to support such families is relatively scarce. This paper will summarise some of the existing research literature and examine the clinical process of working with families following acquired brain injury. After a brief and selective review of the evidence for caregiver stress following brain injury, we will consider some theoretical models and concepts relevant to family work, and the existing research evidence regarding family interventions. We will then focus on our experience of working with families in clinical practice and our approach and expe-rience will be illustrated using a case study.
"19). A review of TBI rehabilitation (Gordon et al., 2006) came to the same conclusion (both generally and regarding FPE in particular), noting limited efficacy studies and the relative youth of TBI as a specialty field and calling (as does Boschen et al. (2007)) for solid foundational research. We found only one study addressing FPE outcomes regarding TBI: Rodgers et al. (2007) conducted a mixed-methods evaluation of MFG-FPE (12–18 months long) adapted for people with brain and spinal cord injuries and their families. "
[Show abstract][Hide abstract] ABSTRACT: Among potential resources for people with serious mental illnesses (SMI) and their families, professionally delivered family psychoeducation (FPE) is designed to engage, inform, and educate family members, so that they can assist the person with SMI in managing their illness. In this article, we review research regarding FPE outcomes and implementation since 2001, updating the previous review in this journal (McFarlane, Dixon, Lukens, & Lucksted, Journal of Marital and Family Therapy 2003; 29, 223). Research on a range of FPE variations continues to return mostly positive effects for adults with schizophrenia and increasingly, bipolar disorder. More recent studies include functional outcomes as well as the more common relapse and hospitalization. FPE research involving adults with other diagnoses is increasing, as is FPE research outside the United States In both cases, uneven methodologies and multiple FPE variations make drawing conclusions difficult, although the core utility of access to information, skill building, problem solving, and social support often shines though. Since the previous review, several FPE programs for parents of children or youth with mood disorders have also been developed, with limited research showing more positive than null results. Similarly, we review the developing inquiry into early intervention and FPE, short-form FPE, and cost studies involving FPE. The second half of the article updates the paradox of FPE's evidence base versus its persistently low use, via recent implementation efforts. Multiple challenges and facilitating factors across healthcare systems and financing, individual programs and providers, family members, and consumers shape this issue, and we conclude with discussion of the need for empirical evaluation of implementation strategies and models.
Journal of Marital and Family Therapy 01/2012; 38(1):101-21. DOI:10.1111/j.1752-0606.2011.00256.x · 1.01 Impact Factor
"Services should aim to improve family functioning. Little evidence supporting specific interventions for parents and siblings is available but long-term family-based therapies and programmes can enhance coping (Cloutier et al. 2002; Williams et al. 2003; Boshcen et al. 2007). Families facing acute disruption , particularly during frequent or prolonged hospitalizations, could benefit from domestic support, and we suggest that financial assistance be offered to families who require it. "
[Show abstract][Hide abstract] ABSTRACT: Children diagnosed with chronic kidney disease (CKD) depend on their parents for complex, continuous and intensive support. The study aimed to explore the experiences of parents who have children with CKD.
Parents of 20 children with CKD, recruited from two paediatric hospitals in Australia, participated in an in-depth interview, qualitative study.
Four major themes were identified: (1) absorbing the clinical environment: parents struggled to accept the diagnosis and permanence of CKD, felt traumatized watching their child undergo invasive clinical procedures, battled to meet appointments, negotiated with staff for their child's needs and felt disempowered; (2) medicalizing parenting: parents became caregivers, a role which was stressful, exhausting and overwhelming. Dialysis was unrelenting and consumed the time, thoughts and energy of parents who felt at fault if their child developed infections and other complications. Parents struggled with their child's psychological problems and episodic aggressive behaviour; (3) disrupting family norms: CKD caused spousal tension, sibling neglect and influenced family planning; (4) coping strategies and support structures: Parents depended on support from their health care providers and valued meeting and learning from other parents of CKD children. Parents also expressed information needs and suggested methods of communicating information.
Despite facing profound and pervasive difficulties, parents strived to fulfil their dual parental and health care provider responsibilities. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness.
Child Care Health and Development 07/2010; 36(4):549-57. DOI:10.1111/j.1365-2214.2010.01067.x · 1.69 Impact Factor
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