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Caregivers in Patient- and Family-Centered Care
Published in Amy J. Litterini, Christopher M. Wilson, Physical Activity and Rehabilitation in Life-threatening Illness, 2021
Amy J. Litterini, Christopher M. Wilson
In ideal circumstances, patient care extends directly from the interprofessional team to both the patient and family unit. In this framework, family members and loved ones are included as an important extension of the support structure provided during patient/family-centered care. Specific attention should be paid not only to the needs of the patient but to the needs of the entire patient/family unit in order to support the appropriate environment for patient care. An interprofessional or multidisciplinary approach to patient/family-centered care includes an emphasis on the needs of the entire family, with services provided when and as needed by the appropriate disciplines. This approach extends in a trans-disciplinary fashion from the dietitian counseling on proper nutrition and appropriate intake to the social worker providing emotional support, to the rehab therapists prescribing physical activity and working on body mechanics training and equipment needs for safety.
Dignity for children
Published in Milika Ruth Matiti, Lesley Baillie, Paula McGee, Dignity in Healthcare, 2020
The ethos of family-centred care has been promoted on children’s wards and situates the child within his/her family. Care is planned by health staff around the whole family rather than just the individual child, with the aim of minimising emotional trauma and assisting recovery. Family-centred care has intuitive appeal to health carers and yet there is a lack of evidence to demonstrate that family-centred care improves the child’s experience (Shields et al, 2007; Carter, 2008). Family-centred care assumes a cohesive family unit. However, at times of stress such as when a child becomes ill, even the closest families can become discordant. Adolescents may naturally be in conflict with parents, and agreeing an approach to care can become very difficult. Coyne (2006) showed that parents were not always able to take part in family-centred care due to other commitments and some resented doing what they considered to be the work of the nurses.
Situating Decisions
Published in Michael van Manen, The Birth of Ethics, 2020
Decision making for someone else cannot help but be complicated in the case of a variety of opinions in the context of a plurality of societal values, just as decision making may also be fraught with uncertainty and unpredictability (Lantos, 2001; Mesman, 2008). As families are recognized and supported in decision making, for some, patient-centered care has become synonymous with family-centered care (Committee on Hospital Care, 2003; Haward et al., 2017). Conflating these notions, however, is fundamentally problematic. Family-centered care points to treating a child within the context of his or her family; patient-centered care means placing the child’s interests upfront. Divergence, disagreement, or impasses are always possible in matters of decision making.
Ethical Issues in Using Behavior Contracts to Manage the “Difficult” Patient and Family
Published in The American Journal of Bioethics, 2023
The rejoinder to this objection is that families matter because patients matter. Beverley H. Johnson, a pioneer in the family-centered care movement and the President of the Institute for Patient- and Family-Centered Care, argued in an early paper that one of the central tenets of family-centered care is the truism that “the family is the constant in the lives of patients of all ages” (Johnson 2000, 153). Because our families are central to our lives as human persons, there is no true caring for the patient without caring about the patient’s family. In fact, family-centered care demands that “care is planned around the whole family, not just the individual child/person, and in which all the family members are recognized as care recipients” (Shields et al. 2006, 1318). This caring for the family, in addition to the patient, not only acknowledges the interconnectedness of patients and their loved ones, but outcomes data also shows that family-centered care improves patient care (Goldfarb et al. 2017; Milner, Marmo, and Goncalves 2021; Nassar Junior et al. 2018; Park et al. 2018; Shulkin et al. 2014). Family-centered care produces a long list of benefits including: “improvements in ICU costs, family satisfaction, patient experience, medical goal achievement, and patient and family mental health outcomes were also observed with intervention” (Goldfarb et al. 2017, 1751). Behavior contracts for family members treat the families of patients as if they are unessential or superfluous to healing, and the data show this is not the case.
Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions
Published in Neuropsychological Rehabilitation, 2022
Edith N. Botchway, Sarah Knight, Frank Muscara, Mardee Greenham, Kate D’Cruz, Bruce Bonyhady, Vicki Anderson, Adam Scheinberg
A number of challenges were raised with regard to delivering family-centred care. The main challenges involved managing family dynamics, preferences, and expectations; supporting priority populations; and issues around family readiness for hard conversations: “Our clinicians in particular always think that they’re acting in the child’s best interest, not necessarily the family’s best interest. And so that’s where the conflict comes up” (#MR2). Other listed challenges included insufficient funding for services, unfamiliarity with the home-based care model, and reducing family cohesion: “in order to come, and live here, and have their residential rehabilitation, we are dividing the family so just by the very nature of what you’re doing, you’re disrupting the family structure” (#MR7). Supplemental Table 1 presents a detailed account of all the topics/issues mentioned under each of these subthemes.
Maximising allied health accessibility for Aboriginal and Torres Strait Islander children: exploring experiences and perceptions of a family-centred consultation model
Published in Speech, Language and Hearing, 2022
Helen Sargison, Yolanda Fernandez, Bonny Marsh, Josephine Ferguson, Wendy Foley, Deborah Askew, Claudette Tyson, Tanya Rose, Nerina Scarinci, Jodie Copley
Within health services, there has been a shift from ‘traditional’ medical models towards holistic biopsychosocial and ecological approaches that are person- and family-centred, collaborative, and responsive to each family's unique needs and context (Bamm & Rosenbaum, 2008; Moore & Larkin, 2005). Family-centred care is a philosophy of care where service providers and caregivers work in collaborative partnerships to support informed decision making that reflects family context, values and priorities, while also promoting family strengths and capability (Arango, 2011; Dunst, Boyd, Trivette, & Hamby, 2002; Espe-Sherwindt, 2008; Kuo et al., 2012). The effectiveness of family-centred care is increasingly being recognised (Park et al., 2018). Family-centred care has been associated with improvements in access to care, efficient use of services, satisfaction with care (Kuhlthau et al., 2011; McCalman et al., 2017; Park et al., 2018) communication, and family functioning (Kuhlthau et al., 2011).