The role of music within the home‐lives of young people with profound and multiple learning disabilities: Parental perspectives

​ Music is weaved within our cultures; it ever-present daily-life and can considerably influence mood, well-being relationships. This study explores parental perceptions of the role music in home-lives children young people with profound multiple learning disabilities UK. It considers views how listening to making shape mood behaviours their child relationship. Using a mixed-method explanatory sequential design cross-sectional survey methodology, collected data from parents carers disabilities. Data were an online questionnaire (n = 48) followed by one-to-one interviews 10). Parents reported that more frequently listen than make home. They also stated used for enjoyment, support mood-regulation add structure lives finally together helps families feel connected strengthened paper outlines positive may have home families. intrinsic part human life; its presence cultures, considerable emotional effect upon all individuals (MacDonald et al., 2017). Ever-present daily lives, fulfils both individual social need (Clayton, 2009), experienced as solitary activity. connects us people, places events; evoke powerful personal responses (Hallam & MacDonald, 2013). Its informal impact on development throughout early years has been growing research interest (Young, 2008). However, although identified medium engage motivate (Ockelford, 2008), little known use home-life. Readily available (Krause 2015), technological advances mean accessibility, ease, variety are ever-increasing (Sloboda 2009). The prominence life continues increase 2015). Studies reveal psychological physiological effects be humans, earliest stages (Juslin Sloboda, 2013), regardless individual's physical or mental ability (Trevarthen, 2002). Listening, responding provide accessible vital platforms communication 2017) creating opportunities self-expression, connectedness empowerment (Murphy McFerran, Individuals empowered through music, which environment. Personal develop preference, offer empowerment. Considering these qualities, potential hold valuable place definition disabilities, provided Core Essential Service Standards (Doukas 2017), adopted this article. term describe heterogeneous group intellectual disability, often combined sensory impairments complexity needs means dependent adult take most everyday activities. As result this, disabling barriers society, likely spend majority free time at (Petry 2005). Better understanding home-life therefore essential. Identifying strategies explicit enhance participation (Axelsson 2014) strengthen relationships resilience family (Luijkx 2019). Parent–child musical interactions traditional world (Custodero Johnson-Green, 2003). These experiences (e.g. exchanges song, rhythmical movement vocal imitation) facilitate intimate parent–child interactions, without formal language (Zeedyk, innate nature observed globally there limited prevalence (Mehr, 2014). Further, shared experiences, children, remains largely unexplored (Williams 2012). Previous studies typically developing 2014; De Vries, 2009; Young, 2008) high pre-recorded Spontaneous singing occurred using instruments was less occur. Young (2008) significance attending external groups had repertoire home, suggesting “relying heavily baby toddler learn song rhyme they home” 2008, 39). Whilst capture few attempt explore quantify (Thompson Literature documents therapy sessions, delivered (Nicholson 2008; Pasiali, 2004; Williams interventions do not such spontaneous singing. Moreover, baseline encounters participants prior resulting evidence typical day-to-day experience highly motivating providing platform communicate (Corke, 2002), structured influences environments, affecting arousal levels listeners provides playful 2012) supports prolonged communications (Prevezer, 2000). offers build facilitates sharing emotions intentions 2013) fundamental effective functioning conflicting roles fulfil nurse, advocate, physiotherapist emergency response (McCann 2016) health (Whiting, Time-poor report juggling schedules, responsibilities order meet (Mactavish Schleien, 2004), strains Despite show play activities, between parent child, valued feelings unity 2004). widely acknowledged recreational provide, important element improving quality (Schalock Felce, neglected area disability relationship studies. Research into given minimal attention. Improved factors contribute 2004) well-being. focuses encounter More specifically, perspectives explored consider aims investigate understandings of: (Tashakkori Teddlie, 2010). Within interview methods collect data. Quantitative via questionnaires first, qualitative follow-up same sample. In way, questions larger sample, before expanding exploring findings detail, collecting cases (Creswell Creswell, quantitative then integrated during discussion section paper, further characteristic design. population having relatively small, forming <0.1% general UK (Emerson, A nonprobability convenience sample parents/carers aged 0–25 generated questionnaire. Potential (2017) descriptor information form help ensure child/young person met criteria study. distributed unrestricted, self-select survey, open public anyone access period five weeks (June–July 2020). link placed reach targeted media networks. Organisations work contacted, request made share number special schools authors contacted asked parents. who completed indicated contributing questionnaire, developed two authors, knowledge, none pre-existing relevant appropriate tool, aimed establish trends homes considered conducted Qualtrics platform, contained forty-two items, including close-ended questions. Five-point Likert scales frequency, likelihood attitudes (see Appendix S1 blank copy questionnaire). Questions derived existing literature and, leisure well authors’ working music-making defined as: “may include vocalising, singing, playing instruments, toys etc.”. One-to-one depth gain greater Interviews lasted 20 40 minutes, average 26 minutes S2, schedule). schedule responses, gathered participants’ home-life, importance relationship, parents’ confidence Semi-structured allowed flexibility themes believed interviewees (Brinkmann, semi-structured method particularly due diverse allowing uniqueness each family's circumstance captured. undertaken ethics approval University Birmingham. abides British Educational Association's guidelines educational (BERA, 2018). All description consent indicate whether happy participate. There no incentive any participants. sets anonymously labelled securely stored. over 70% completion; level completion felt significant (Lavrakas, 48 parental/carer responsibility analysed. Twenty-six respondents would interested being interviewed, email. Ten responded email agreed interviews. Each recorded fully transcribed. Descriptive children/young presented Tables 1 2. Pseudonyms throughout. “Similar cerebral palsy…affects everything. Her body her learning, cognition speech.” “Not compatible kind diagnosis.” “KAT6A Syndrome” “Severe hypertonia hyper flexibility… she uses wheelchair.” “PMLD it's rare genetic condition called SCN2a” “epilepsy autism, but his epilepsy” “uses wheelchair” “Blind, four limb palsy global delay.” “Completely feeding, care everything else.” “Cri-du-chat syndrome” “quite medical problems developmental issues” “like deaf…with bone-anchored hearing aids” “Disabilities complex needs” “Henry needs, ADHD, other issues “Dom's spastic quadriplegic, epilepsy Schizencephaly; about third brain's missing.” obtained visually inspected Transcribed open-ended coded abductive approach (Timmermans Tavory, 2012a,b). first author analyse predetermined categories literature, whilst remaining emergent concepts Abductive analysis emphasises that, should analysed broad knowledge theory, researcher pre-conceived concepts. After familiarisation data, reading re-reading transcripts, preliminarily Nvivo 12 (NVivo, deductively literature-driven categories: resource purpose. inductively six-step process described Braun Clarke (2006) S3, code-trees). results aligned study's aims. making-music. frequency types resources opportunity expand main themes. For example, asked; “Is what extent?”. active making. Most 44; 92%) daily, however, half 20; 42%) daily. some 4) “never” (Figure 1). interview, 9) discussed commenting: “an incredible extent, every day, several times day” (Lisa) “listening massive (Melissa). …well my brother got him guitar he's absolutely loving really…he sit hours just playing. (Melissa) way terms he do, that's because limitations, and…potentially understanding. So I guess…if able to, we [music-making] bit more. (Tracy) Other limits included “time.” 5) commented lack “exhausted” after arriving end school day. families, weekend time-poor “care demands,” “physical care,” “stress” looking Meeting impacted activities select son/daughter listened Figure 2 shows wide range styles Popular 39; 81%) Children's Song Nursery Rhyme 36; 75%). “Other” “Musicals,” “Rap” specific resources”. chose preferred thought like to. Thirty-six “strongly agreed” She does seem particular love flute penny whistle. think pitches. (Karine) And always choices knows wants it. find interesting, isn't thing…. (Lucy) He doesn't recognize it, pieces anything. (Sue Dave) It's difficult tell, don't see, you know, different play, see reaction him. Alongside considering supported Interview spoke untuned percussion tambourine, shaker ocean-drum. 8) tuned commonly ukulele 4), guitar, bass-guitar piano. certainly fantastic ideas best tapping instrument body…feeling rhythm… giving direction pointers really do. (Hannah) Once realized class something going her… definitely motivated me that. reason respondents’ Thirty-five (73%) selected enjoyable. Enjoyment primary child. Twenty-seven (56%) “they/we enjoy music”. One respondent wrote, “We sing silly fun”. join source enjoyment. together. (Helen) You remember pleasure, family, truly point. So, good morning there's washing your face, I'm brushing teeth mean, they're exactly quality… Then hoisting song… loves proper anticipates hoisted that… songs routine anyway. agreed/agreed” increased attempts 41, 85%), alertness 38, 79%) 43, 90%) displayed 3). “alertness” “they aware responsive surroundings” “playfulness” lift appear happier/more animated.” When describe, own words, influenced child's behaviour theme “calming relaxing” 31, 65%) effect. Comments “she relaxes, calms concentrates sounds.” Respondents ways alter depending type to: “engages him, excites him” “it brings out reactions.” caregiver 4. claimed playfulness, “lift mood” appearing “happier/more playfulness captured comments usually expresses pleasure,” “more noises. Attempts hand actions. Laughter, excited behaviour,” “action lead giggles laughter”. [Music] soothe if feeling distressed, thing great joy. They're quite quick the…music like, tell start dancing… (Sarah) communication, sort turn, turn thing. when [music] comes on, maybe she'll still while banging shaking… she's noisy… squealing funny will chair listen, hear making, can't speak, noises (Kevin) self harm bit, get upset various issues. said… down another regarding anxieties, calms, calming level. She'll giggly, much focused. If put things mat one buzzer toys. beeline clap vocalize… sign engagement, efforts, part. No, big [his] life… didn't wouldn't miss necessarily respond so no, guess doesn't. According enjoyed 45; 94%) making-music 41; 85%) evidently enjoyable activity 5. higher percentage music. words them said “happy” 25; 54%), “calm” “relaxed” 12; 26%) “connected” 11; 24%). describing 23 (52%) “happy”. almost survival actually me. us. don't, can't, crash. enjoyment very Speaking connection helped “feel connection” them, “strengthen relationships” members found according parents’/carers’ reports mirroring (De ease effort required Listening “calming” keeping previous (Västfjäll Findings suggest preferences communicated and/or interpreted study, remained unclear parents/caregivers. initiate, independently, similar supporting argument stage revealed resources. resources, obtain groups/classes, line (Barrett, skills transferred long outliving attendance classes. modelled especially occur (Ware, attempts, alertness, increased. documented 2012; Prevezer, sometimes restricted. limitations caring 2016), behavioural characteristics routines. highlights 2014), structure, life. Structure seen routines engaging multi-sensory stimulus (Altenmuller Schlaug, Melodies rhythmic, pitch interval indicators, alongside language; cues accompanied response, mutual important, generate Luijkx Creating togetherness, begin overcome difficulties Ouvry, self-selected regularly internet, reflect wider (Fricker, Additionally, key demographic age, gender, education level, size) focus rather generalise population. PMLD relied interpretation reporting, reflected (Nind, period, undertaken, COVID-19 pandemic, created unique circumstances respondents. accurately experiences. pandemic restrictions prevented direct involvement collection. Recommendations investigation availability provision. Further exploration sibling interaction recommended. carers. Although differ individuals, strong purpose appears lifeline whereas others communicate, past-time routine. accessible, inclusive emotive many caregivers family. unites, bonds. value Highlighting Supporting, equipping empowering fulfilling corresponding reasonable request. Please note: publisher responsible content functionality supplied authors. Any queries (other missing content) directed