The importance of supportive relationships with general practitioners,hospitals and pharmacists for mothers who ‘give medicines’ to children with severe and profound intellectual disabilities
Restricted accessResearch articleFirst published online March, 2022
The importance of supportive relationships with general practitioners,hospitals and pharmacists for mothers who ‘give medicines’ to children with severe and profound intellectual disabilities
A purposeful sample of 15 mothers of children with severe and profound intellectual disabilities participated in this hermeneutic phenomenological study through interviews and completion of a diary. The aim of the study was to explore mothers’ lived experience of ‘giving medicines’ to children with severe and profound intellectual disabilities. Findings yielded multiple themes, one of which gave insight into the importance of supportive relationships with health professionals. The general practitioner (GP), hospital and pharmacist are key in providing supportive elements to mothers’ daily role. Having the support of a helpful GP was key in helping mothers cope on a daily basis for child related queries on illness, getting prescriptions or seeking advice. Accessibility to the hospital and avoiding the emergency department with their child was recommended. The pharmacist was central to the daily activities relating to ‘giving medicines’ and a good relationship resulted in a happier mother.
AllsoppD (2006) Improving hospital experiences for children with complex needs. Paediatric Nursing18(9): 24.
2.
BarbuiCCiprianiASaxenaS (2009) Pharmacological Treatment of Mental Disorders in Primary Health Care. Geneva: World Health Organisation.
3.
BellR (2012) ‘Does he take sugar in his tea?’: communication between people with learning disabilities, their carers and hospital staff. Tizard Learning Disability Review17(2): 57–63.
4.
BlairJ (2011) Care adjustments for people with learning disabilities in hospitals. Nursing Management18(8): 21–24.
5.
BraafSRileyRManiasE (2015) Failures in communication through documents and documentation across the perioperative pathway. Journal of Clinical Nursing24: 1874–1884.
6.
BrennerMKidstonCHilliardC, et al. (2018) Children’s complex care needs: a systematic concept analysis of multidisciplinary language. European Journal of Pediatrics177(11): 1641–1652.
7.
BuelowJMSmithMC (2004) Medication management by the person with epilepsy: perception versus reality. Epilepsy Behaviour5(3): 401–406.
8.
Contact a Family (2011) Putting Families with Disabled Children at the Heart of the NHS reforms in England. London: Contact a Family.
9.
Contact a Family (2013) GP Practice Guide: Supporting disabled Children and Young People, Information for Health Professionals. London: Contact a Family.
10.
CostelloIWongICKNunnAJ (2004) A literature review to identify interventions to improve the use of medicines in children. Child: Care, Health & Development30(6): 647–665.
11.
D’AmoreABrosterSLe FortW, et al. (2011) Two-year outcomes from very low birthweight infants in a geographically defined population across 10 years, 1993-2002: comparing 1993-1997 with 1998-2002. Archives of Disease in Childhood. Fetal and Neonatal Edition96(3): F178–F185.
12.
DaviesJCarterB (2013) A longitudinal study of families with technology-dependent children. Journal of Child Health Care17(3): 217–218.
13.
DoyleCCroninP (2017) Difficulties in ‘giving medicines’ to children with severe and profound intellectual disabilities – mothers’ experiences. Archives of Disease in Childhood102(Suppl 1): pA16.3–A17.
14.
EddyL (2013) Caring for Children with Special Healthcare Needs and Their Families. UK: Wiley Blackwell.
15.
EliasERMurphyNA and Council on Children with Disabilities (2012) Home care of children and youth with complex health care needs and technology dependencies. American Academy of Pediatrics. Available at: www.pediatrics.org/cgi/DOI/10.1542/peds.2012-0606,DOI:10.1542/peds.2012-0606(accessed 16 April 2020).
16.
EmersonEHattonCRobertsonJ, et al. (2011) People with Learning Disabilities in England. UK: Improving Health and Lives, Learning Disabilities Observatory.
17.
FiksAGMayneSLocalioAR, et al. (2012) Shared decision making and health care expenditures among children with special health care needs. Pediatrics129(1): 99–107.
18.
FlanaganPViraniABakerW, et al. (2010) Pharmacists making house calls: innovative role or overkill?Canadian Journal of Hospital Pharmacy63(6): 412–419.
19.
FloodB (2016) Medication use in residential care for older people with intellectual disabilities. Learning Disability Practice19(7): 24–29.
20.
FloodB (2017) Safety of people with intellectual disabilities in hospital. what can the hospital pharmacist do to improve quality of care?Pharmacy5(3): 44.
21.
FloodBHenmanM (2010a) An invisible profession: pharmacists and the population with intellectual disability. Irish Pharmacy Journal88: 170.
22.
FloodBHenmanM (2010b) An invisible profession: pharmacists and the population with intellectual disability. International Pharmacy Journal27(3): 41–44.
23.
FloodBHenmanM (2011) The intellectually disabled: a group in need of pharmacist’s help. International Journal of Pharmacy23(3): 41–44.
24.
FrancisSASmithFGrayN, et al. (2002) The roles of informal carers in the management of medication for older-care recipients. International Journal of Pharmacy Practice3: 1–10.
25.
FrancisSASmithFGrayN, et al. (2006) Partnerships between older people and their carers in the management of medication. International Journal of Older People Nursing1: 201–207.
26.
GatesBMafubaK (2014) Learning Disability Nursing: Modern Day Practice. London: CRC Press.
27.
GrayNJShawKLSmithFJ, et al. (2017) The role of pharmacists in caring for young people with chronic illness. Journal of Adolescent Health60: 219–225.
28.
GriffithsDMorphetJInnesK, et al. (2014) Communication between residential aged care facilities and emergency departments: a review of the literature. International Journal of Nursing Studies51: 1517–1523.
29.
Health Service Executive (2009) Report of the National Reference Group on Multidisciplinary Disability Services for Children aged 5-18. Dublin: Health Service Executive.
30.
Health Service Executive (2017) Making Every Contact Count, A Health Behaviour Change Framework and Implementation Plan for Health Professionals in the Irish Health Service. Dublin: Health Service Executive.
31.
Health Service Executive (2018) Shaping the Future of Intellectual Disability Nursing in Ireland. Dublin: Health Service Executive.
32.
HoggJ (1992) The administration of psychotropic and anticonvulsant drugs to children with profound intellectual disability and multiple impairments. Journal of Intellectual Disability Research36: 473–488.
33.
HouriganSFanaganSKellyC (2018) Annual report of the National Intellectual Disability Database Committee 2017. Dublin: Health Research Board.
34.
Irish College of General Practitioners (ICGP) (2018) Curriculum for GP Training in Ireland. Dublin: Irish College of General Practitioners.
KalyangoJNHallMKaramagiC (2012) Home medication management practices and associated factors among patients with selected chronic diseases in a community pharmacy in Uganda. Health Services Research12(323): 1–9.
37.
KaoHConantRSorianoT, et al. (2009) The past, present, and future of house calls. Clinical Geriatric Medicine25(1): 19–34.
38.
KapellDNightingaleBRodriguezA, et al. (1998) Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Mental Retardation36: 269–279.
39.
KeohaneCBaneAFeatherstoneE, et al. (2008) Quantifying nursing workflow in medication administration. Journal of Nursing Administration38: 19–26.
40.
LauDTBermanRHalpernL, et al. (2010) Exploring factors that influence informal caregiving in medication management for home hospice patients. Journal of Palliative Medicine13(9): 1085–1090.
41.
LauDTKasperJDHauserJM, et al. (2009) Family caregiver skills in medication management for hospice patients: a qualitative study to define a construct. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences64B(6): 799–807.
42.
Laura Lynn, Ireland’s Children’s Hospice (2012) Our Story (A helping guide). Dublin: Laura Lynn, Ireland’s Children’s Hospice.
43.
LeeLKMulvaney-DayNBergerAM, et al. (2016) The patient passport program: an intervention to improve patient-provider communication for hospitalized minority children and their families. Academic Pediatrics16(5): 460–467.
44.
LetiziaMCreechSNortonE, et al. (2004) Barriers to caregiver administration of pain medication in hospice care. Journal of Pain and Symptom Management27(2): 114–124.
MathersNHarndenA (2011) Delivering high-quality child health care in general practice. British Journal of General Practice61(584): 165–166.
47.
McCarronMSwinburneJBurkeE, et al. (2011) Growing Older with an Intellectual Disability in Ireland in 2011: First Results from the Intellectual Disability Supplement of the Irish Longitudinal Study on Ageing. Dublin: Trinity College.
48.
McConkeyRBarrOBaxterR (2007) Complex Needs: The Nursing Response to Children and Young People with Complex Physical Healthcare Needs. Coleraine: DHSSPSNI and University Of Ulster.
49.
McMillanSSKingMAStapletonH, et al. (2018) A pharmacy carer support service: obtaining new insight into carers in the community. International Journal of Pharmacy Practice. Available at: https://www.ncbi.nlm.nih.gov/pubmed/29732644,DOI:10.1111/ijpp.1254(accessed 16 April 2020).
50.
Mercy University Hospital (2016) My Personal Health Passport – for Paediatric Patients. Cork: Mercy University Hospital.
51.
MichaelsJ (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: The Stationary Office.
52.
MilliganDW (2010) Outcomes of children born very preterm in Europe. Archives of Disease in Childhood. Fetal and Neonatal Edition95(4): F234–F240.
53.
NakkenHVlaskampC (2007) A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities4(2): 83–87.
54.
National Health Service (NHS) Education for Scotland (2014) The Pharmaceutical Care of People with Learning Disabilities. Glasgow: National Health Service (NHS) Education for Scotland.
55.
NichollHDoyleCMoranS, et al. (2013) Identifying the types of technology that are used by children with intellectual disabilities and associated complex needs living at home in Ireland. British Journal of Learning Disabilities41: 229–236.
56.
NorthwayRReesSDaviesM, et al. (2017) Hospital passports, patient safety and person-centred care: a review of documents currently used for people with intellectual disabilities in the UK. Journal of Clinical Nursing26(23-24): 5160–5168.
57.
NoyesJHastingsRPLewisM, et al. (2013) Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of ‘my choices’. BMC Palliative Care12(5): 1–17.
58.
O’ DwyerMMestrovicAHenmanM (2015) Pharmacists’ medicines-related interventions for people with intellectual disabilities: a narrative review. International Journal of Clinical Pharmacy37: 566–578.
59.
Pharmaceutical Society of Ireland (2016) Future Pharmacy Practice in Ireland Meeting Patients’ Needs. Dublin: Pharmaceutical Society of Ireland.
60.
PhillipsAMorrisonJDavisRW (2004) General practitioners’ educational needs in intellectual disability health. Journal of Intellectual Disability Research48(2): 142–149.
61.
PolitDFBeckCT (2017) Nursing Research, Generating and Assessing Evidence for Nursing Practice, 10th edn. Philadelphia, PA: Wolters Kluwer Health.
62.
ReeveSBakerK (2005) Identifyisng and supporting Carers through the GP Surgery. What Difference does it Make?Hertford: Carers in Hertfordshire.
63.
Royal College of General Practitioners (2010) RCGP Child Health Strategy 2010–2015. London: Royal College of General Practitioners.
64.
SchumacherKLStewartBJArchboldPG, et al. (2008) Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncology Nursing Forum35: 49–56.
65.
SimkissD (2011) Community care of children with complex health needs. Paediatrics and Child Health22(5): 193–197.
66.
SmithFFrancisSAGrayN, et al. (2003) A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services. Health and Social Care in the Community11: 138–145.
67.
SohLLLowLL (2018) Attitudes, perceptions and practice patterns of primary care practitioners towards house calls. Journal of Primary Health Care10(3): 237–247.
68.
The National Autistic Society (2017) My Hospital Passport for Autistic People. London: The National Autistic Society.
69.
TravisSSBernardMAMcAuleyWJ, et al. (2003) Development of the family caregiver medication administration hassles scale. Gerontologist43: 360–368.
70.
TravisSSBetheaLSWinnP (2000) Medication administration hassles reported by family caregivers of dependent elderly persons. Journal of Gerontology: Medical Sciences55: M412–M417.
71.
TravisSSMcAuleyWJDmochowskiJ, et al. (2007) Factors associated with medication hassles experienced by family caregivers of older adults. Patient Education Counselling66(1): 51–57.
72.
University Hospital Bristol (2011) My Hospital Passport. Bristol: University Hospital Bristol.
73.
Van ManenM (1990) Researching the Lived Experience. Buffalo, NY: State University of New York.
74.
Van ManenM (2014) Phenomenology of Practice, Meaning-Giving Methods in Phenomenological Research and Writing. Walnut Creek, CA: Left Coast Press.
75.
VermeirPVandijckDDegrooteS, et al. (2015) Communication in healthcare: a narrative review of the literature and practical recommendations. International Journal of Clinical Practice69(11): 1257–1267.
76.
WoodDFinlayF (2011) Complementary and alternative medicine use in children with life-limiting conditions. Nursing Children and Young People23(4): 31–34.
77.
WoodgateRLEdwardsMRipatJD, et al. (2015) Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatrics15(197): 1–15.
78.
World Health Organization (2017) Medication without Harm: WHO Global Patient safety Challenge. Geneva: WHO.
79.
WrightDJKellyJ (2012) Medication administration in patients with dysphagia. Nursing Standard27(10): 35–40.
80.
ZijlstraHPVlaskampC (2005) The impact of medical health conditions of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities18: 151–161.
