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

School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
Child Care Health and Development (Impact Factor: 1.83). 03/2011; 37(4):512-23. DOI: 10.1111/j.1365-2214.2011.01219.x
Source: PubMed

ABSTRACT 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.

Download full-text


Available from: Veronica Swallow, Feb 05, 2015
  • [Show abstract] [Hide abstract]
    ABSTRACT: Fathers' contributions to the management of long-term childhood medical conditions are under-represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered. To review studies of fathers' actual contributions in a wide range of conditions, the potential to optimize their contribution through additional interventions by health professionals and a direction for future research. Narrative review of the literature. CINAHL, Medline, PsychInfo and ERIC databases were searched electronically between the years 1995-2008. The terms adherence, adjustment, child, chronic, compliance, concordance, condition, coping, disease, father, illness, information, long-term, management/intervention, mother, role, self-care and treatment were searched for separately and in combination. English language papers reporting primary research were selected and supplemented by hand-searching reference lists. Thirty-five papers (arising from 29 studies) met criteria and were selected for narrative review. Five themes were identified: (i) the impact of long-term conditions on fathers' ability to promote their child's well-being, (ii) factors influencing fathers' involvement in health care, (iii) personal growth/beneficial effects for fathers, (iv) the impact of father's involvement on family functioning and (v) strategies that increase fathers' participation in their child's health care and in research investigating fathers' participation. The review suggests that fathers' involvement in children's health care can positively impact on fathers', mothers' and children's well-being and family functioning. A range of strategies are identified to inform the promotion of fathers' contributions and future research investigating their input.
    Health expectations: an international journal of public participation in health care and health policy 05/2011; 15(2):157-75. DOI:10.1111/j.1369-7625.2011.00674.x · 2.85 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: This article is a report of a protocol for studying the development and evaluation of an online parent information and support package for home-based care of children with chronic kidney disease stages 3-5. The study is funded by a National Institute of Health Research, Research for Patient Benefit Grant awarded (December 2010). Approval to undetake the study was obtained from the Department of Health National Research Ethics Service (June 2011). Children with chronic kidney disease require skilled, home-based care by parents, supported by professionals. Parents have identified a need for continuously available online resources to supplement professional support, and structured resources tailored to parents' needs are highlighted by policy makers as key to optimizing care; yet, online resource provision is patchy with little evidence base. Using mixed methods, we will (i) conduct parent/child/young person/professional/patient and parent volunteer focus groups to explore views on existing resources, (ii) collaboratively define gaps in provision, identify desirable components, develop/test resources and conduct a feasibility randomized controlled trial, and (iii) of usual professional support versus usual support supplemented by the package. Eighty parents of children with chronic kidney disease will be randomized. Primary outcomes will assess parents' self-efficacy and views of resources, using standardized measures at entry and 24 weeks, and semi-structured interviews at 24 weeks. We will finalize trial components for a later definitive trial. By working collaboratively, we will derive a detailed insight into parents' information and support needs and experiences of using the package, and should see improved parental self-efficacy.
    Journal of Advanced Nursing 01/2012; 68(9):2095-102. DOI:10.1111/j.1365-2648.2011.05908.x · 1.69 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Care of children and young people (children) with long-term kidney conditions is usually managed by multidisciplinary teams. Published guidance recommends that whenever possible children with long-term conditions remain at home, meaning parents may be responsible for performing the majority of clinical care-giving. Multidisciplinary team members, therefore, spend considerable time promoting parents' learning about care-delivery and monitoring care-giving. However, this parent-educative aspect of clinicians' role is rarely articulated in the literature so little evidence exists to inform professionals' parent-teaching interventions. This ongoing study addresses this issue using a combination of quantitative and qualitative methods involving the twelve children's kidney units in England, Scotland and Wales. Phase I involves a survey of multidisciplinary team members' parent-teaching interventions using:i) A telephone-administered questionnaire to determine: the numbers of professionals from different disciplines in each team, the information/skills individual professionals relay to parents and the teaching strategies/interventions they use. Data will be managed using SPSS to produce descriptive statisticsii) Digitally-recorded, qualitative group or individual interviews with multidisciplinary team members to explore their accounts of the parent-teaching component of their role. Interviews will be transcribed anonymously and analysed using Framework Technique. Sampling criteria will be derived from analysis to identify one/two unit(s) for subsequent in-depth studyPhase II involves six prospective, ethnographic case-studies of professional-parent interactions during parent-teaching encounters. Parents of six children with a long-term kidney condition will be purposively sampled according to their child's age, diagnosis, ethnicity and the clinical care-giving required; snowball sampling will identify the professionals involved in each case-study. Participants will provide signed consent; data gathering will involve a combination of: minimally-obtrusive observations in the clinical setting and families' homes; de-briefing interviews with participants to obtain views on selected interactions; focussed 'verbatim' field-notes, and case-note reviews. Data gathering will focus on communication between parents and professionals as parents learn care-giving skills and knowledge. Interviews will be digitally recorded and transcribed anonymously. This study involves an iterative-inductive approach and will provide a unique, detailed insight into the social context in which professionals teach and parents learn; it will inform professionals' parent-educative roles, educational curricula, and health care policy.
    BMC Health Services Research 02/2012; 12:33. DOI:10.1186/1472-6963-12-33 · 1.66 Impact Factor