Fathers’ and mothers’ developing skills in managing children's long-term medical conditions: How do their qualitative accounts compare? Child: Care

School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
Child Care Health and Development (Impact Factor: 1.69). 03/2011; 37(4):512-23. DOI: 10.1111/j.1365-2214.2011.01219.x
Source: PubMed


Little is known about the respective experience of fathers and mothers within couples when managing their child's long-term medical condition. This study therefore aimed to obtain and compare fathers' and mothers' accounts of managing long-term kidney conditions.
Qualitative study involving individual then joint semi-structured interviews with 14 couples (biological fathers and mothers of 15 children whose care is managed at a specialist unit). Interviews were digitally recorded, transcribed and analysed using Framework Analysis. Transcripts within and across couples were compared.
Fathers and mothers made a significant contribution to management and a key theme identified was 'developing skills' in: information processing, sharing/negotiating caregiving, restraining children, adapting to treatment regimens and communicating. Although skill development was often a challenging and uncertain process, both fathers and mothers wanted to and did participate in caregiving; they often negotiated this with each other to accommodate caring for other children, paid employment and to provide mutual practical and emotional support. Developing skills in holding their child for procedures and treatments was a major concern, but it was fathers who assumed the 'protector' role and worried more about their child's long-term health and well-being, while mothers concerned themselves more with current clinical issues and maintaining relationships with professionals. Expressing appreciation for fathers' and mothers' skill development may promote good 'working relationships' between professionals and both parents over the many years of the trajectory.
Developing skills for home-based caregiving of long-term conditions is a challenging and uncertain process. Both parents often participate in caregiving, and the findings reported here may help professionals decide how best to support both parents in their home-based caregiving.

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Available from: Veronica Swallow, Feb 05, 2015
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    • "Face to face interviews helped to elicit greater depth of detail from parents [37]. Our purposive sampling approach meant our results specifically apply to the research cohort because parents from different ethnic and socio economic backgrounds participated, and 19 fathers (a group who are often under-represented in healthcare research) took part in the study [31,49-53]. Parent recollections were first hand experiences of care management; couple interviews enhanced discourse due to this double hermeneutic [54], as participants shared their mutual care experiences. "
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    ABSTRACT: Background Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents’ efficacy of care and Fear of the child’s health failing; and (3) Belonging/Becoming (Parents defining task and group members’ worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child’s healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions.
    Full-text · Article · Jul 2014 · BMC Health Services Research
    • "However, despite many positive accounts, some parents report conflicting feelings about holding their children. Mothers and fathers of children with long-term conditions have discussed how they argue about 'whose turn it is this time' to hold their child for procedures, with neither wishing to be the one to hold (Swallow et al. 2011). Parents who have been involved in holding their child against their child's wishes express this left them feeling as though they had 'let their child down' (Alexander et al. 2010) as this conflicts with the natural parenting instinct to protect their child (McGrath et al. 2002). "
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    ABSTRACT: This critical reflection on the ethical concerns of current practice is underpinned by a systematic synthesis of current evidence focusing on why and how children are held or restrained for clinical procedures within acute care and the experiences of those present when a child is held against their wishes. Empirical evidence from a range of clinical settings internationally demonstrates that frequently children are held for procedures to be completed; younger children and those requiring procedures perceived as urgent are more likely to be held. Parents and health professionals express how holding children for procedures can cause feelings of moral distress expressed as uncertainty, guilt and upset and that this act breaches the trusting and protective relationship established with children. Despite this, children's rights and alternatives to holding are not always respected or explored. Children's experiences and perceptions are absent from current literature. Children and young people have a moral right to have their voice and protests heard and respected and for these to inform judgements of their best interests and the actions of health professionals. Without robust evidence, debate and recognition that children are frequently held against their wishes in clinical practice for procedures which may not be urgent, children's rights will continue to be compromised.
    No preview · Article · Jul 2014 · Nursing Inquiry
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    • "However, some parents were reluctant to acknowledge comprehension difficulties in case their parenting skills were criticised by professionals [8], thus increasing their likelihood of web-searching for CKD specific information and support. Parents wanted to be empowered to safely and effectively manage clinical responsibilities at home [9], with fathers and mothers often having differing information and support needs [10]. "
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    ABSTRACT: There is a lack of evidence-based information and resources to support home-based care in childhood CKD online, 3-5. Qualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy. 32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families' health-care experiences). Developing a web-application that meets parents' information and support needs will maximise its utility, thereby augmenting parents' self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents' self-efficacy beliefs about management of their child's CKD could potentially be promoted by OPIS.
    Full-text · Article · Feb 2014 · BMC Nephrology
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